**Please do NOT send Ryoo stickers as she has a phobia of stickers (Pittakionaphobia). This includes stickers on envelopes. If possible could the writing be larger and clear to enable Ryoo to be able to read it herself. Please also don’t send food or drink.

Story written 2017

Ryoo was like all other seven year old children, then everything changed …

In January 2012 Ryoo was taken by ambulance from our local A&E to the Freeman Hospital. Ryoo was diagnosed with end stage heart failure. No one knew why.

No one can imagine what it’s like to watch your child’s life slipping away. Every day her body was pumped with more and more medicines, she became thinner and thinner. But she never stopped smiling, she never gave in. She would play with the play specialist, the clown doctors and make bracelets.

I wanted to scream and shout “this isn’t fair, why my child?”, but when I saw Ryoo determined to keep going I decided to fight with her.

Sadly Ryoo’s body wasn’t responding to the medication and less than a month after diagnosis all that was left was to place Ryoo on the organ donor register and hope that a heart would be come available in time. Ryoo took this in her stride like she does with everything else.

Ryoo was becoming weaker and weaker and eight days after being listed, it was decided that Ryoo’s body needed a rest and she was to be placed into an induced sleep (life support).

When we told Ryoo what was going to happen she just smiled, the smile that had kept us all going.  I looked into my daughter’s blue eyes and wondered if I would ever see them again. The next time I saw Ryoo  she was in PICU and ventilated. I held her hand and read story after story to her. On 10th  February I was sitting reading to Ryoo when the call came that Ryoo was going to receive her gift of a new heart. I couldn’t believe it. She had fought and fought so hard. Here was her gift, a new heart. A chance to continue to live her life.

I saw Ryoo the next day, she was covered in wires but she was awake and I could see those blue eyes. Ryoo made excellent progress and within three to four days she was out of PICU and back on the ward. She continued to get stronger and stronger and was home after three weeks.

Life was not to be the same for Ryoo, life has changed but Ryoo embraced these changes.

Ryoo lives with a life limiting condition. A life that at anytime could be taken away due to infection or rejection. Ryoo will take immunosuppressants for the rest of her life. But this doesn’t stop or hold her back.

Ryoo’s health has been a constant battle.

With many diagnoses –

2012 – Heart transplant.

2013 – Raynaud’s Phenomenon, a condition that restricts the blood flow to the hands and feet making them cold and white and painful.

2013 – Hypermobility syndrome with bilateral flat foot, causing constant pains to her knees legs and feet. When the pain is unbearable she uses a wheelchair.

2013 – Low immunity to infection requiring a weekly subcut infusion of a blood product immunoglobulin into her legs.

2014 – Stomach and head migraines lasting days to weeks.

2014 – Autism spectrum.

2016 – 14 weeks of diarrhoea causing weight loss and fatigue.

2016 – Blocked femoral artery causing pain to her leg and three months of daily injections.

2017 – Followed by a diagnosis of Chronic Fatigue Syndrome – ME.

On top of this Rachel has to attend eight-weekly transplant clinic, blood, ECG, echo etc. Appointments with all the different consultants she sees. Tests after tests. Numerous hospital admissions and appointments.

Update 12th April 2026

Ryoo has been in hospital for a while now due to a big clot sitting near her heart. She’s requiring extra dialysis sessions and she is struggling.

Update 29th October 2025

Ryoo has spent more time in hospital than at home.

Ryoo has dialysis three times a week every week. At this point, Ryoo is not suitable for a kidney transplant.

Luckily, Ryoo’s service dog Loki goes with her everywhere and helps massively with her mental health.

Ryoo has been having issues with her tunnel line and after weeks and weeks of trying to save the line, she had to be admitted to hospital for an emergency tunnel line to be placed and a new jej tube. Ryoo is waiting for a fistula to be created so they can access dialysis this way. Ryoo also needs an angiogram on her head done. Ryoo has a blood clot that the haematology team are trying to dissolve with high daily doses of blood thinners. She’s back on insulin as her blood sugars are all over the place. Ryoo gets very tired and lives with constant chronic pain.

Ryoo and Loki have been enjoying their monthly stay at St Oswald’s Hospice.

Ryoo, as always, tries to remain positive and the Post Pal post always helps her do this.

Update 30th June 2024

Ryoo been back in hospital for nearly 3 weeks now and she’s very down. Sadly she’s been in hospital more this year than at home.  Her kidney function keeps dropping despite different plans. She now has a portacath, PEG and PEGJ and is on 24-hour TPN. Her mood is very low. Her service dog Loki is able to be in hospital with her.

Update 18th March 2024

Since Ryoos last update her health has been not the best and she has spent more time in hospital than at home, including a long stay in Critical Care on life support.
Ryoo is now TPN fed for 22 hours a day with only a two hour break and all her medication goes through her PEGJ.  Ryoo is only allowed to drink 300mls a day which as you can imagine is very difficult.
All of this is along side all the medical conditions she already has. Life is hard and very challenging. All the teams involved are trying to keep Ryoo as well as they can.
Ryoo has a number of procedures planned over the next few months as long as she remains stable.

What has really helped Ryoo deal with all the hard/challenging times is receiving, cards, letters and gift from all the PostPals. This has made Ryoo feel special and distract her from what is happening to her.
Thank you to everyone that has taken to the to write and send gifts. You are all amazing.
Ryoo loved all the games, Lego, switch games, Jellycats and Japanese stationary.

Thank you for thinking of Ryoo and making her feel special. Xxx

Update 27th June 2022

The last three month we spent in three different hospitals with Rachel have shown me how amazing my daughter is. The fight to live.

On the 20th March Rachel suffered a cardiac arrest at home and was unresponsive for 8 minutes.
Luckily the paramedics where at the scene when it happened and they managed to ventilate and sedate Rachel and blue light her to Critical Care.

Over the next three months Rachel spent 90% of her admission in ICU at the RVI and Freeman Hospital.
Rachel started to have issues with her kidneys, lungs and heart.

Rachel had five mayor episodes during her admission where her kidneys, lungs and heart couldn’t cope and she required CPAC and constant dialysis. Rachels lungs suddenly would fill up with fluid as if she was drowning inside. No one understands how or why this happened as all of her blood results were perfect. During two of these episodes Rachel was that poorly she was due to be ventilated and sedated but luckly she kept fighting back and managed to remain on CPAC.

After 10 weeks in ICU Rachel eventually managed to move to the ward and stay there (the other times Rachel had been to the ward she had bounced straight back to ICU). During the weeks in ICU Rachel had over 8 blood transfusion, 10 weeks of dialysis, loads of IVs, CTs, MRI, lines fitted and four Vascath fitted and then a more permanent tunnelled Vascath as Rachel has no vein access.

It was a further three and a half weeks on the ward before it was felt Rachel was stable enough to go home. HOME a word we didn’t know we would ever hear.

Being home is strange and at first hard as we had lost the security of the doctors and nurses being around and ICU just upstairs. But we’ve soon adapted into a new normal routine. Rachel is now on a fluid restriction and calorie restriction. She has to be weighed every day, have her temperature and stats taken at least four times a day. We have to be constantly on the look out for any fluid build up and breathlessness.

No one knows if Rachel will have any further episodes but all we can do is live for the now and follow the strict guidelines from the teams involved.

Rachel attends clinic weekly to have her bloods taken and her Vascath flushed and dressing changed.

Life feels different and strange now, but hopefully with time everything will settle down.

Thank you soooo much to everyone that has sent post to Rachel. She has loved me reading them all to her.  She especially loved all the Jellycats as she collects them.

You’re all amazing people making time for others. I can’t thank you enough. During our darkest time you gave us normality.

Update 30th October 2021

The last few months  have not been kind to Rachel.  The impact all her medical conditions are having on her body and mental health is sad to see.  Shes very down and struggling to see the point which is heartbreaking. 

Thank you for all the post that has been sent to Rachel. As aways it greatly received.  Sorry that I haven’t thanked everyone individually. 

Update 14th June 2021

Since Rachel last update the complexity of Rachels medical needs has increased. 

A MRI to her stomach showed Atrophic Pancreas (diseased) which is likely to be due to her Rare Genetic Disease. 

A MRI to her head showed a buildup of pressures which needs investigating. 

A CT to the stomach showed a blood clot between her heart and stomach. She has been put on a daily injections and is due to see the Hematology Team. 

Rachel had been referred to the epilepsy team as it appears she’s having some type of seizures. 

Rachels pain relief has been increased and she is now on Morphine Sulfate alongs side the other pain medication. 

Her vision continues to get worse and shes been registered Visually Impaired. 

An appointment with Addenbrooks confirmed the diagnosis FamilialPartial Lipodystrophy Type 2, Dunnigan Variety due to Rachels Rare Genetic Disease. 

Rachels living with constant widespread chronic pain and constant Nausea. She has days when she can’t bring herself to eat and on the other days she is eating to due to being hungry rather than enjoyment. (Shes even stopped eating her chocolate buttons which she loves)

Rachel has had a number of admissions to hospital through A&E due to the impact everthing is having on her body. 

We are waiting to see the impact all the new issues and diagnoses have a Rachels body and mental heath. 

A MDT meeting is being arranged to look at how to manage Rachels complex medical needs and give her the best quality of life. The Palliative Care Team and Chips are to be involved. 

It has been a hard, stressful and emotional filled month with worry and lots of tears. 

To not be able to wave a magic wand and make it all better is so hard as a parent. To see your child progressively get worse. 

Rachel had tried to remain positive but its been to much for her and shes had some very dark days. 

Thank you to everyone that has thought of Rachel and sent letters and cards as always it means so much. Xx

Update 26th March 2021

We’ve had a terrible week.

The eye consultant on monday registered Rachel as Visually impaired. She need a Head MRI done asap and then a MDT meeting to look at how best to support her.

Then the gastro team called to say they want a stomach MRI and a endoscopy top and botttom. As she had nausea for over three months constantly.

The diabetic team increased her insulin and said her kidneys are releasing protein into her unrin so she needs to see the kidney team sooner rather than later.

The pain team are waiting a joint meeting to discuss Rachels pains and how to support her better.

And to top it off we went for Rachels 6 weekly bloods and she won’t bleed at all and was so upset. It couldn’t have come at a worse time as loads of her consultants had asked for extra bloods to be done.

My heads all over more and more teams involved and I forget who knows what and what everyone is doing. My heart breaks for Rachel as it does seem unfair to have as many medical conditions and life limiting conditions.

Tomorrow is another day so lets look forward to that.

Update 30th March 2022

Rachel is still in ICU very unwell.

Update 21st March 2022

Rachel was on weekend leave from hospital when she became unwell at home. Paramedics were called and whilst they were with her she went into full cardiac arrest. It took 8 minutes of CPR for them to revive Rachel, they intubated her and transferred her to ITU.

Update 6th February 2021

Rachel had a quiet birthday and it took her a week to open all her cards and gifts (with help) Thank you to everyone that sent cards and gifts Rachel loved them all. Rachels health isn’t good and she waiting for a MRI on her Head, a MRI on her Stomach and a Endoscopy.  She has been Registered as Visually Impaired and needs a MDT meeting to discuss how best to support her. 

Her Insulin has been increased again as she becomes more more insulin resistant. Rachels had a Constant headache for 3 months and nausea for 4 months alongside the widespread chronic pain is getting her down. The Pain team and gastro are looking into this. Shielding continues. 

Thank you for thinking of Rachel

it means a great deal. 

Update 6th February 2021

The complexity of Rachels medical conditions has become increasingly harder for her to handle physically and mentally. The constant widespread chronic pain, fatigue, bed bound and generally feeling yuk all the time is depressing and hard for her to deal with. 

Having to deal with the impact of so many medical conditions and the impact each one has on her body. 

She is waiting for a referral to Addenbrooks for her Lipodystrophy. There are only 500 people world wide with Rachels type of rare disease and sadly there isn’t much information around to suport her, all the teams involved are learning as they go along. We are blessed to have so many dedicated doctors, consultants and nursers etc looking after her, who call regularly and check to see how we all are. 

A referal has also been made to the Kidney Team due to Swelling and concerns from teams involved that the fat within Rachels body can cause problems for her organs. 

On a positive note we are greatful for another year with Rachel as we celebrate in February her 9th heart transplant day and her 17th birthday.  

Thank you for all the post and gift

Rachel has received over the last few months. We really appreciated the smiles the post gives to Rachel. Especially the chocolate as she will occasionally share yummy. 

Sorry that we’ve not had an opportunity to thank everyone personally. 

Update 20th August 2020

Life is a massive struggle for Rachel, as she continues to be bed-bound. Suffering constantly with chronic wide spread pain, fatigue, headaches and nausea. 

The complexity and uncertainty of Rachel’s medical needs are impacting her life daily and leaving her physically exhausted and in a low mood. 

Rachel has just been diagnosed with Partial Lipodystrophy which is due to the mutation in her LMNA gene. This has come as a complete shock and sadly another medical condition to add to the already long list. 

The worrying impact this condition will have on Rachel physically and on her mental health. Sadly there is no cure. 

The Partial Lipodystrophy is what has made Rachel diabetic and resistant to insulin. More injections and more medication. 

We are still waiting for further tests to be carried out from the Allergy and Immunology team. Due to the ongoing issues with her gut, swollen face and lips, distended stomach and issues regulating her blood temperature. The teams are also looking into her genetics Laminopathy. 

Rachel’s CFS/ME and constant widespread pain has left her feeling constantly fatigued and no amount of sleep is refreshing her. Her concentration is none existent.

Rachel has had a lot of hospital admission over the last few months. Due to COVID-19 and Rachel being extremely vulnerable all of her normal hospital appointments wherever possible have been over the telephone. 

Covid-19 has impacted the whole family due to Rachel being extremely vulnerable.  As advised by her consultants we continue to shield Rachel and try and keep her safe. 

Rachel is  very down and feeling overwhelmed by all of her medical and health needs and the impact they have on her. 

Update 7th June 2020

The last few months haven’t been good to Rachel.  Rachel is bed-bound and in constant chronic wide spread pain and an increase in pain medication hasn’t made any difference.  The complexity of Rachel’s medical needs is impacting her life daily. 

Rachel is due to have further test and bloods carried out by the allergy and immunology team due to ongoing issues with her gut, swollen face and lips, distended stomach and issues regulating her blood temperature. They are also looking into her genetics, DNA and her Laminopathy. 

The diabetic team are constantly increasing the amount of insulin Rachel takes as her blood glucose levels are constantly high. (Rachel now takes more insulin than any adult or child the team see) Rachel is having to inject insulin every two hours, which isn’t nice. If Rachel’s blood glucose levels don’t improve by the end of July she will be admitted to hospital to be monitor and tests carried out.  Rachel’s CFS/ME has left her feeling fatigued, her concentration none existent. No amount of sleep is refreshing her. 

Covid-19 has impacted the whole family due to Rachel being extremely vulnerable. It has left Rachel feeling even more isolated then she already did.  Rachel is very down and feeling overwhelmed by all of her medical and health needs and the impact they have on her.  Rachel would have been finishing her last year at high school but due to her multiple medical and health needs Rachel hasn’t attended school for nearly 4 years.  No GCSEs and no prom. 

We have made the decision to pause Rachel’s schooling at 16 years old and focus on her health needs and enjoy the moments. We would like to thank everyone at PostPals that has sent Rachel post and the two wonderful Mini Mouses she has received. 

You have all brought smiles to Rachel’s face which is priceless. 

Update 27th November 2019

Life continues to be a struggle for Rachel, having to deal with the challenges that so many medical conditions brings and with that uncertainties for her future.

She has spent most of November feeling yuk: fatigued and in bed, resting, sleeping and lying down. Trying constantly to distract herself from the widespread pains. She’s sick of being diabetic now and hates having to inject the insulin and have her blood glucose checked so often.  Too many hospital appointments and meeting.

Loki her puppy continues to bring her love, happiness and a much needed companion.

Rachel continue to love receiving post from PostPals. It brings her happiness and makes her aware of the world and how thoughtful people are.

Thank you from the bottom of my heart for sending post to Rachel and making her feel special.

Update 1st September 2019

Rachel’s had a rubbish summer backwards and forward to the hospital. 

Rachel has been diagnosed as insulin dependent Diabetic. At the moment she has to administer insulin subcutaneous at least four times a day and do her bloods eight or more times a day. More medication to add to the collection. Rachel is at the hospital every week till her glucose levels stabilise. She also has the diabetic nurse and dietitian coming out regularly to check on her. 

This diagnosis has come as a shock and as a family we are still trying to get our heads around it. 

Her CFS/ME hasn’t been the best and Rachel’s still having days when she can’t walk or move parts of her body. She’s tired all time, feels rotten and looks very pale with  headaches most days. 

Rachel is very down at the moment as it will be another school year that she doesn’t attend, and this would be her GCSE school year with Prom.  It’s over three years since she last went to school. 

On a positive note Rachel’s puppy Loki has settled in and Rachel adores him. They spend as much time together as possible, snuggling on Rachel’s bed. 

Rachel has loved all the post and gifts she has received from the Post Pals. It makes her feel part of the outside world. It makes her feel valued and that people care about her. 

Thank you from the bottom of our heart to everyone that has sent Rachel cards, letters, postcards and gifts. You have all made her smile and that is priceless. Thank you xx

Update 20th June 2019

Life has been a struggle for Rachel since her last Post Pal update. Her complex medical needs have continued to impact her daily life and cause problems with her health. Rachel has had days when she physically can’t walk, stand or move her arms. Alongside this she’s has constant chronic widespread pain. She’s had a constant headache for over 30 days and to top this off her blood sugar levels have been all over the place. (This is now being investigated.) The teams involved feel these added health issues are part of her ME/CFS. 

Since Rachel’s last update she’s been diagnosed as being moderately visually impaired as she has constant double, blurred vision with black silhouettes. Rachel continues to have issues with breathlessness due to her lung function being between 35/50%. This causes Rachel stress as she panics when she becomes breathless. We have reached three years since Rachel last went to school. Since January she’s only managed a few hours of school home tutoring. It’s hard this time of year as children are getting their school reports and next year’s teachers. Rachel would have been going into her last year of high school and taking her GCSEs and having prom. Sadly none of which is going to be possible.

Far too many hospital appointments and hospital admissions, planned and unplanned, to manage the complexity of Rachel’s health and medical conditions. 

On a positive note we got Rachel a little puppy dog called Loki. Rachel adores him and he gives her purpose. 

We can’t thank you all for the lovely letters and cards Rachel has received.  You are all wonderful, caring people. Thank you for the smiles you have given to Rachel which are priceless. 

Update 1st March 2019

2019 has been a busy year so far for Rachel. It started with a three day admission to check Rachel’s heart and stents under GA in the cath lab. Rachel’s heart is looking fabulous, but her stents needed to be ballooned back up. Lots of test carried out. Transplant clinic continues to be every 8 weeks.
Rachel’s has had a MRI on her legs for her Muscular Dystrophy and a MRI on her head due to blurred vision, headaches and sight issues. No results back yet, but all very stressful for Rachel.  Lots of hospital appointments, MDT meeting and involvement from CNDS team.  Life is driven at the moment by Rachel’s chronic widespread pains, Muscular Dystrophy, ME and generally feeling yuk. This is all causing massive sleep issues.

We are very proud of Rachel as she has managed 30 minutes of home tutoring so far this year.

On the 10th February we celebrate Rachel’s 7th heart transplant day which is always very emotional. Happy that Rachel has made it this far and we are able to celebrate another milestone, but sad that another family has another year without their loved one.  We also celebrate Rachel’s 15th birthday. We can’t thank everyone enough for all the cards that Rachel received for her birthday. When your child doesn’t attend school they don’t tend to get many, so you all made her birthday very special.

Thank you to everyone that has sent post to Rachel. Sorry that I am unable to thank you all personally but you’re all amazing.
Seeing Rachel smile and laugh as she opens her post is priceless. Thank you

Update 2nd November 2018

Rachel’s health is still plagued by chronic diffused Pain. The Chronic Fatigue Syndrome has not been good and Rachel has been bed bound for days and days. Sleeping and resting more as she tries to take her mind off the pain.

Rachel is struggling to handle all of her complex medical needs and as a family we are trying to deal with this together.

Due to the weather change and added stress and anxiety Rachel is enduring at the moment her Raynaud’s Phenomenon is flaring up more and more.

The results from the endoscopy showed that Rachel has Centrally Mediated Abdominal Pain Syndrome, which means she is now living with a constant chronic pain to her abdomen. Rachel is seeing the Pain Team about this.

Rachel has lots of hospital appointments over the next two months up to Christmas. Hopefully some answers to why her face and stomach swells up everyday, a plan to help with the constant pains and an opportunity to catch up with the Muscular Dystrophy and transplant team.

All the consultants and specialist involved in her care are trying to support her the best they can and give her the best possible future.

On a positive note Rachel has had an assessment for a Power chair which hopefully will help give her a little independence and help ease the pains to her legs and feet.

I would like to say the biggest thank you for all the post Rachel has received since her last update. She’s been overwhelmed by it all and you’ve made her so happy, she’s loves opening it all. We read all the cards and letter together.

Thank you to everyone that sends post to Pals and spreads so much happiness around.

Update 9th September 2018

We have now hit the two year mark since Rachel last attended school and there’s no sign of her returning due to her many complex needs. Rachel is very low at the moment as her sister had left to go to uni and everyone is talking about going back to school. Too many hospital appointments to keep up with and more medication changes and more medication to be added.  Life is tough and at Rachel’s age she is more and more aware of how her body is letting her down and that there are many things she can’t do any more due to her LGMD1B. Living with a constant abdominal pain and joint and muscle pains is very tiring and causing her to feel fatigued even more. Rachel rests a lot during the day and uses her wheelchairs whenever we are out. She has two admissions due this month, at least 5 teeth out, and an endoscopy.

On a positive note, we are due to start renovating the garage into a downstairs bedroom and wet room for Rachel to give her more independence. This will hopefully help her feel more part of the family. As she can’t manage stairs very well and at the moment is isolated upstairs.

Rachel has loved all the post she has received and it’s the one part of her life that has remained normal and FUN. The gifts and cards she has received have been personal and very touching. Thank you everyone. I don’t get on Facebook very often to say thank you but we really appreciate everything you all do.

Update 20th July 2018

Life isn’t the best for Rachel, with her complex medical needs giving her ongoing health issues. At the moment she has to endure 1-3 hospital appointments most weeks, weekly physio and weekly subcut infusion. She’s also waiting for three admissions for procedures to be carried out. Rachel had her first appointment with the Genetics team after being diagnosed with a rare progressive muscular and skeleton disease – Muscular Dystrophy LGMD1B.

This appointments was extremely stressful for Rachel and a eye opener for us all. Rachel’s lung function is only 50-60% and this would explain why she gets breathless and tired. Her wrists and fingers have developed contractors and she needs supports to help ease the pain. Rachel has pains in most of her joints, but the pain is worse in her ankles, knees, shoulders, back and wrists. The muscles are weakening in her arms and legs. Rachel has been referred for hydrotherapy to help ease the pains and relax her muscles, and pain management to help control the pain she is in.

As this is a rare genetic mutation, no one can say yet how progressive it will be. They can only monitor Rachel and support her. Rachel is struggling to come to terms with the diagnosis of LGMD1B. She finds it hard to see a positive future when so many things she use to be able to do she can’t any more and she’s aware that the diagnosis is progressive.

Rachel’s chronic abdominal pain is causing her lots of distress and this really doesn’t help her Chronic Fatigue Syndrome and she can be bed bound for days. She’s due to have an endoscopy very soon so they can make a diagnosis. Rachel can have days and days when she can’t sleep due to the pain. It’s hard as the pain in her stomach never goes away.

Cardio transplant clinic continues to be every 8 weeks and Rachel is due there next month. Lots of tests to be carried out.  Alongside this, she continue to see the respiratory and immunology team. Chronic Fatigue – ME – continues to be a struggle. Rachel feels tired and fatigued but is unable to sleep due to the pain. Constantly feeling tired.  Rachel’s having weekly physio which, sadly, is a reminder to her of what she can’t physically do any more. But hopefully it will help in the long run.

It’s been two years since Rachel last attended school and at the moment there’s no plans for her to be able to return. This causes isolation and can make Rachel feel very lonely. This time of year is especially hard on her as everyone is getting a school report, going on school trips and having leavers parties. Through all the hospital appointments and ongoing health issues, with the support of Post Pals we try hard to make life as happy and fun as possible.

We managed to attend the Post Pal trip to Chessington, which was truly amazing and we made many, many happy memories.

Thank you so much for the invite.

Thank you for the ongoing support Post Pals has given to Rachel. The happiness the post gives Rachel is priceless.

We really appreciate you all and can’t thank you enough.

Thank you xxx

Update 10th March 2018

I’ve struggled with this update as it makes it all seem even more real.
I am such a positive person but life is rubbish at the moment as we are all trying to get our head around Rachel’s rare genetic diagnosis and what this means for Rachel. A recent appointment with the Genetics Professor left us with even more questions and a very upset Rachel. Lots of leaflets on Muscular Dystrophy and more appointments. Trying to remain positive. She is still living with the chronic abdominal pain.

Update 4th November 2017

Rachel has recently been diagnosed with a Rare Genetic Muscle disease: Lamin A.C gene – Laminopathy  De Novo Lamin Mutation LMNA c.868G>A (p.GLU390Lys) Skeletal muscle disease. Muscle weakness and contractures. There’s no cure for this condition. Rachel will need to have long term physio and hydrotherapy to help reduce the muscle and joint pains. We are waiting to see how this will effect Rachel short term and long term.

This would explain why Rachel can’t do certain physical tasks she used to and how her wrists and fingers have formed and can’t be moved as much. She struggles to write. She’s been having terrible trouble with her wrists, legs and back. Genetics want to keep a close eye on her breathing as this is also one of the problems related to this genetic mutation. Rachel’s had the OT out and they are applying for a stair lift and to change our main bathroom to make life better for Rachel.

Rachel’s also having a terrible time with stomach pains which aren’t relived with any pain relief. She’s endured a few trips to A&E and 5 days admission into hospital.  No answers yet, had CT scan of her stomach and lots of bloods taken. This is all getting Rachel down. We are desperately waiting for a plan and a way forward. Rachel’s been referred to pain management.

ME – Chronic Fatigue continues to be a struggle, with Rachel feeling tired and fatigued but unable to sleep due to the pain. She’s spending all her time lying around in her bed staring at cartoons and constantly feeling tired. Rachel had an overnight admission to hospital for her Cardio transplant. Rachel is waiting for CT of heart and blood results. Rachel continues to attend transplant clinic every 8 weeks to make sure her heart is ok.

Rachel’s list of consultants and medical conditions is getting longer: Vascular, rheumatology, Cardio, neurology, Dental, Gastro, physio, hydrotherapy and Genetics to name a few. At the moment it’s all getting too much for Rachel – she’s feeling that she’s never going to get back to school and be pain free. She’s struggling, as she has that many consultants and specialist involved in her care that at times it can be overwhelming and hard to manage especially as she’s autistic.

Thank you to everyone that supports Post Pals and sends Happy Post. The post Rachel receives gives her an opportunity to forget about her complex medical needs and feel very special. Rachel loves opening the post and gets me to read them to her (Rachel’s concentration isn’t the best). Thank you from the bottom of my heart, for all the smiles you have given to Rachel. Rachel now hasn’t been to school for over 16 months due to complex medical needs and she can feel very isolated as she has little contact outside the house. Please keep spreading the smiles around, you guys do an amazing job.

Rachel sends a huge hug. X

Update 1st October 2017

Rachel’s health continues to be an issue with a number of hospital admissions arranged. At the moment the biggest problem is gastro with Rachel having a constant distended stomach and pains which are causing her to have no sleep and feel generally rotten. More changes to medication and more medication added to try and resolve this ongoing problem.

Rachel’s chronic fatigue (ME) is causing lots of pains in her joints and leaving her feeling very isolated and lonely as she hasn’t attended school for 14 months now. Rachel spends most of her time in bed watching DVDs. This gets her down a lot.

Rachel’s had a few bad stomach and head migraines recently so her neurologist is looking at her medication to see if anything needs changed.  Rachel’s heart transplant means she attends clinic every six to eight weeks.  Rachel’s yearly admission is due next month. We are waiting for further cardio genetics tests to be done and a referral to a muscular genetics consultant.

Rachel has lots of hospital appointments due and her dad thinks we should get a PA to make sure we don’t miss any (lol). Having so many different medical conditions can be very hard on Rachel, at times as she feels like she never gets a break from it all. Even her consultants refer to her as the complex needs child.

We can’t thank everyone enough who sends Rachel post. The smile we see on her face when the post arrives is priceless. It gives her a chance to forget about her pains and have FUN opening them. You ALL make her feel so very special and wanted. Thank you. Rachel sends a BIG thank you too x

We all really appreciate everything Post Pals does. It’s hard seeing your child go through so much and not be able to make a difference but seeing Rachel so happy receiving post is wonderful to see.

Update 5th June 2017

Rachel is still off school and has been since last year, emotional upset and her concentration is very poor. She’s due to start FOBMAP diet due to her Gastro issues so she can’t have any chocolate and most sweets. (No wheat, dairy, gluten and loads of other things), Rachel is very distressed about this as she loves chocolate.

Rachel’s been getting more pains in her feet, legs and knees. Her consultant feels it’s due to Rachel not being active due to her ME-CFS and she now has daily physio to do in bed. Hopefully she’s going to get a new wheelchair this week.

Rachel’s been struggling with her weekly subcut infusion (realisation that it’s for life) and the pain it causes hopefully this will settle down otherwise it’s back to having it done in Hospital.

Rachel still attends cardio transplant clinic every 6-8 weeks for all the regular tests.

Rachel and I would like to say a BIG thank you for all the welcome cards and goodies that have been sent. You have all put a BIG smile on Rachel’s face. I’ve not seen her this happy in a long time. Sorry that Rachel’s not up to writing replies but she loves me reading them all to her and helps me reply on Facebook.

Thank you from the bottom of my heart x

Update 29th October 2025

Ryoo has spent more time in hospital than at home.

Ryoo has dialysis three times a week every week. At this point, Ryoo is not suitable for a kidney transplant.

Luckily, Ryoo’s service dog Loki goes with her everywhere and helps massively with her mental health.

Ryoo has been having issues with her tunnel line and after weeks and weeks of trying to save the line, she had to be admitted to hospital for an emergency tunnel line to be placed and a new jej tube. Ryoo is waiting for a fistula to be created so they can access dialysis this way. Ryoo also needs an angiogram on her head done. Ryoo has a blood clot that the haematology team are trying to dissolve with high daily doses of blood thinners. She’s back on insulin as her blood sugars are all over the place. Ryoo gets very tired and lives with constant chronic pain.

Ryoo and Loki have been enjoying their monthly stay at St Oswald’s Hospice.

Ryoo, as always, tries to remain positive and the Post Pal post always helps her do this.

Update 21st August 2017

Rachel continues to struggle with her ME and she has days when she physically can’t get out of bed and relies on her daily painkillers to enable her to move. Rachel is seeing more and more specialists to help with her ME, Hyper Mobility Syndrome and joint pains.
Rachels is also having more Genetics tests done due to her heart transplant and finding a problem with one of her genetic genes. Gastro issues continue with daily bloating of the stomach and more referrals and tests to find out why. Loads and loads of hospital appointments.

Thank you to everyone that supports Post Pals. You ALL really do spread smiles around. Your post gives Rachel a chance to forget about her complex medical needs and have FUN opening them and she loves waiting for the post to arrive. (I read them as Rachels concentration isn’t the best.) You ALL make her feels very special and wanted. Which when your child hasn’t been to school for over a year and doesn’t have any friends is so important. You have ALL given her so many smiles. 😊 Thank you from the bottom of my heart xx
Rachel sends a BIG thank you too xx

Story written 2016

Since he was born, Aidan has been in and out of hospital with regular chest infections and viruses which really knock him for six. He now has a portacath and goes into hospital for two weeks every three months for IV antibiotics to be put through his portacath to try and keep him well. He is also fed through a gastrostomy after it was found he had an unsafe swallow.

As yet, we do not have a full diagnosis which explains Aidan condition. It is believed he has an undiagnosed genetic condition. We do know he has Ehlers-Danlos Syndrome which makes fine motor things such as writing quite difficult. He has to use special pens to help him write. He has recently started to enjoy Lego which has been really good at developing his fine motor skills.

Due to the number and frequency of his infections and viruses it is thought he has an issue with his immune system. He goes into hospital for a day every three weeks to have an infusion of immunoglobulin to try and boost his system.

Despite all this, Aidan is a happy chappy and nobody who meets him ever forgets him!

Update 31st May 2026

We would like to say a HUGE thank you to Sue Foster, who has been Aidan’s monthly poster, with apologies that we haven’t posted in the group.

His pain is still very up and down, and we also have some outstanding results to come back from recent tests, but he continues to take it all in his (very large!) stride! He is now 6ft 3in.

Aidan really likes Formula 1, Rugby League and theatre! We have been busy going on mini breaks to see theatre shows and, by the end of the year, we will have seen five West End shows and three touring productions, plus a Michael Ball concert! That’s not counting Aidan himself starring in Beauty and the Beast with Youth Theatre. He recently got his own chair for wheelchair rugby too.

Update 1st November 2025

Aidan finally had his “temporary” Gastrostomy removed late last summer after 12 and a half years. This actually involved 2 surgeries as Aidan doesn’t heal well and it didn’t close properly the first time. He has also had a further surgery in the spring of this year to try and help his bladder. His pain levels have increased and spread over the last 18 months. His team are hopeful this will be temporary as he has done alot of growing in that time (6ft 2 at 14 years old) but we also know what Aidan’s idea of “temporary” is!!

He is now fanatical about Formula 1 and will talk about it constantly if you would let him! Aidan has continued with his love of drama and youth theatre, recently taking part in a production of Charlie and the Chocolate Factory as Grandpa Joe! He has also taken up wheelchair rugby league!!

Update 18th June 2021

Both Aidan and Rhiannon are currently receiving some new referrals and both looking at tests being carried out in the near future. Aidan also had a few days in hospital last week, his first for a while. Rhiannon especially is having a bit of a hard time with pain being a very real problem. They both continue to appreciate the letters of support they receive from Post Pals!

Update 26th March 2021

Both kids have been having various appointments with Rhiannon especially needing more referrals and even a hospital admission. We have been shielding again so things have been generally quiet. We thank everyone who thinks of us for the post. They have brightened what has otherwise been a very tough year.

Update 1st November 2020

Both children have now returned to school, but at the same time appointments and tests that had been on hold are now coming in thick and fast. A couple of new things for both of them has also meant new referrals. But as always, they continue to take them all in their stride.

We once again thank everyone who  has sent post. This last 6 months has been hard on all of us complex families, but the post they receive always makes them smile.

Update 20th August 2020

Aidan has Ehlers Danlos Syndrome alongside other yet undiagnosed genetic conditions. He has daily pain in his joints, suffers random reactions, struggles to eat and drink due to swallowing problems, so has a feeding tube. He has had a few recent appointments and now has extra medication.

Update 1st October 2019

As things stand, we are still waiting for certain consultant reports to come through. This will hopefully give us a better plan moving forward, for both of the kids. Things have been a bit all over the place recently, but the post they both receive always brightens their day, which in turn makes us smile. It really does have a cheering affect on the whole family during the darker days. For that, all of us thank all of you

Update 1st September 2019

Aidan has been struggling recently unfortunately. This is due to an increase in his pain levels and also more fatigue. He has been having a few more falls too. As a result, we have had a few long meetings and he will have a couple of new referrals as a result. These also apply to Rhiannon as it’s best if we get them both looked at together to get the whole picture. Aidan continues to be his usual smiley self and takes most of it in his stride, however we have had a few more tears recently. The post he receives from Post Pals is always guaranteed to bring a smile. So thank you one and all.

Update 24th June 2019

Aidan is holding his own at the moment! We have had to increase one of his medications to keep things in check. We have a big meeting coming up to help us decide on the way forward for him. It is also looking likely he will need a trip to theatre in the very near future.

Update 17th November 2018

Aidan is having a bit of a mixed time at the moment. He is very stable from a chest point of view which is awesome as this was a major area of concern for everyone. However, this stability is throwing up a number of other concerns as they become obvious. A new referral to one specialist has also led to a further referral to another. His joint pain and fatigue are also on the increase which is being monitored closely. From a stomach and eating point of view there is no change. Still suffering pain but doing his best. Despite all this, he continues to be a smiley happy chap. And nothing makes that smile as big as the post he receives from you amazing people. Thank you

Sibling Rhiannon is also struggling with her joint pain increasing, but she is facing it head on and with such strength.

Update 10th September 2018

Aidan continues to really struggle with pain in his gastrostomy, as well as increasing pain in his joints. He has now been referred for more testing too, connected to problems that have re-emerged after the immunoglobulin therapy stopped. We will hopefully get these tests soon to move forward.

Update 2nd June 2018

Aidan is finding things a little bit tough at the moment. He is really struggling with pain and his energy levels are low. There has been a deterioration in his joint issues and we are waiting to see his consultant in the next couple of weeks about this. His gastrostomy was changed in the last couple of months,but it sadly hasn’t helped the issues he has been having. It’s even left us with a stoma site which is actually more “leaky”. He is also waiting for further swallow tests as a couple of his team still have concerns around his ability. Despite all this he continues to be a happy boy. The post he receives especially brightens his day. A huge thank you to everyone who sends him and sister anything.

Update 2nd January 2018

A huge thank you to each and every one of you who has sent Aidan H and Rhiannon cards and parcels during December. Between his birthday and Christmas, Aidan received so many beautiful cards. A massive thank you to everyone who sent anything during 2017. It was a huge source of comfort and smiles during a very difficult year.

It has ended with Aidan back on the surgical waiting list, waiting for his problematic gastrostomy to be changed. We are also having a number of issues with weight gain, meaning that we have had to reincrease his tube feeds. There are also re-referrals back into a couple of therapy services due to some deterioration, as well as widening gaps between him and his peers.

Update 4th October 2017

Aidan is currently having a rough time with his feeding tube. We are therefore waiting for a surgical review to try and get it moved and changed. He is also finding school much more difficult this academic year, leading to many phone calls and emails.

Rhiannon has now started high school. A few teething problems, but on the whole she is getting the much needed support to get her through. We also have an exciting month coming up so watch this space!

The post they both receive brighten their days so much.

Update 21st August 2017

Lots of appointments at the moment for both children. A few tough days for Aidan. Eating has not really progressed meaning we have had to delay dropping more of his tube feeds. His gastrostomy has been giving him one or 2 problems too meaning we suspect it may need to be changed soon. A couple of busy exciting months coming up so we are doing absolutely everything to keep him going!
Thank you as always for the lovely cards, gifts, emails answer general well wishes. They make those darker days just that bit brighter giving us a light to see through them.

Update 5th June 2017

Aidan has had another busy month of appointments but still continues to be unable to drink due to his swallow not being safe. He has also enjoyed another short course of hydrotherapy and we await a final assessment on the impact it has had and whether we can add this in as a long term treatment. June will bring another couple of big meetings to discuss a way forward/next steps. This month, we have also had Rhiannon’s birthday, so we have had parties and family time which he has thoroughly enjoyed.

Unfortunately, Mum has spent time in hospital again but is slowly on the mend now. We also have Rhiannon undergoing a minor operation on the 8th of June so hospital continues to be a factor for us as a family.

Post Pals continues to be a shining light for the children and we thank everyone who has sent cards and parcels. Sorry that we haven’t been able to thank you all personally.

Update 1st May 2017

Aidan can now eat, he has been doing relatively ok. He has restarted hydrotherapy for a month, which he absolutely loves. He has also had another swallow test to see if he can start drinking but unfortunately he failed this. As a result, he has ended the month with a chest infection. While he is feeling unwell with it, he is not allowing it to stop him and so far we have managed to keep him out of hospital. Once again, your letters and parcels have been a big highlight of another generally difficult month within the family. Each and every one received bring huge smiles to the faces of both children.

Update 2nd March 2017

Tough start to this month with Mummy in hospital. Aidan is doing quite well though. He has had a chest infection but for once we managed with just treatment at home. We have now also been able to progress from purees to some normal foods and he is loving it! We have yet to find something he doesn’t like!

Rhiannon has also found out this month that she will need her 6th ENT surgery, but we have yet to receive a date for that.

Your letters and cards continue to be a great source of joy and comfort to both children, so thank you.

Update 4th January 2017

Both children received so much Post in December! Aidan had both Christmas and his birthday to celebrate! Lots now coming up in the coming months for both of them. Lots of tests and a couple of new therapies. Thank you so much Post Pals for your continued smiles.

Update 4th November 2016

Good month overall for Aidan. Kicked off with a great weekend at Chessington!! It was great to spend time with other kids and parents who understand just how difficult it can be when your child is unwell, especially when it comes to chronic conditions. Thank you Post Pals. His infusions continue. We are still trying to persevere in getting him eating orally. This is proving to be very slow going though. Rhiannon has had extra referrals added to her list. November is going to be busy as we have lots of appointments, meetings and an admission for Aidan. We are hopeful that all this will give us a bit more direction overall in terms of treatment and care for both of the children.

Update 2nd October 2016

Nice quiet month for Aidan really. A couple of hospital reviews and back to school! The latter is wearing him out but we are monitoring this. Both Aidan and Rhiannon love receiving post and will sit together to open any that comes. It’s just about the only time they aren’t arguing! Thank you all.

Update 5th September 2016

August has been a fairly quiet month for Aidan. Still had a few appointments, but no real big ones! He has remained fairly stable health wise. One or two small blips but they have been handled without the need for admission! However, we have noticed a drop in his energy levels with fatigue kicking in much quicker than before. He does have a new wheelchair coming following a reassessment, so hopefully this will give him back some independence. Now counting down the days until the return to school.

Update 7th August 2016

While not 100% well, Aidan is currently in a reasonable spell for him, but is still having problems with moving forward in terms of eating. We do have a couple of big appointments coming up in the next month or so, which we hope will help give us some answers moving forward. Aidan is still loving receiving his post and we have to read them over and over to him!

Update 7th July 2016

Aidan started the month in hospital having IV antibiotics. While there he received his brilliant Minion balloon, which is still going strong! He has also had a difficult month with gastrostomy problems and is in pain.

Both Aidan and his sister received lots of lovely cards and letters as well as a few gifts so many, many thanks. They both love receiving post.

Update 2nd June 2016

Aidan is finishing the month back in hospital for his planned IV antibiotics. He has actually done pretty well this time, and even though he was starting to be unwell as he came in,  he wasn’t as poorly as he has been at this stage in the past. He is still loving receiving things from Post Pals so thank you all.

Sibling Rhiannon has also had a couple of appointments and will also now start to receive some of the support she needs.

Update 2nd April 2016

Aidan started the month in hospital, finishing off some IV antibiotics. He then had to go back into hospital for a gastrostomy change. We had a couple of fairly good weeks but he has ended the month with another chest infection. So far, we have avoided admission and have everything crossed, so we can manage at home. The post he has received in his first month as a Pal has been amazing and certainly put smiles on the faces of both him and Rhiannon. Thank you!

Update 3rd March 2016

February has been a very busy month for Aidan. The most exciting thing for him was being accepted as a PAL! He spent the last two weeks of the month in hospital for his antibiotics. This was a very difficult admission with lots happening. One good thing to come out of it was that he had a swallow test. As a result we can now start introducing tastes. This is the first step in a long journey to eating again. We look forward to seeing what March will bring!

Story written 2013

This is all on top of the fact that he still isn’t talking. We have been invited to a speech and language course to help us to try and develop Finley’s language and understanding. We also attend sing and sign toddler group on a Thursday to try and help him to develop or sign or just be able to communicate his needs to us.

It is all just so much more than we are used to as parents, we can deal with the tube feeding and the gastro surgery but this is a whole new and scary ball game.

Update 14th April 2016

Finley and his family are now moving on from Post Pals, we would like to wish them all the best for the future. Finley’s family said this:

A thank you for everyone who has sent post to all three children over the time that they have been a part of post pals. We are really grateful. We have also saved pretty much every card and letter that we have received over the time we have been receiving post, they are in scrapbooks so that Finley can look back over them when he is older and remember everyone who took the time to make him smile.

Update 6th February 2016

We are all just getting over a sick bug here. Awful bug made worse when you are poorly and can’t be sick.  He was wrenching and floppy. Was sent home from school even after the bug because he had fallen asleep and was too floppy to sit up and do any work. Then slowly passed it around his Dad and then Jack and Olivia.

All looking much better though now, thank God. Finley went to hospital for a pre op this month, for some reason he was referred to the local day surgery unit instead of the children’s hospital. We got there and filled the forms out for them to say no chance of being able to have surgery there. So waiting for another preop and then date to come through.

Update 8th January 2016

First we would like to say thank you to everyone who sent a Christmas card, post card or gifts to Finley, Jack and Olivia this Christmas. Huge thanks to the elfs and to our Mrs Claus for amazing reindeer post. You all made Christmas that bit more exciting.

December has been up in the air. I was back in hospital and had surgery just before Christmas. This meant that Dad had to take Finley to the hospital. Not something that he is used to. He did a grand job. I think sometimes he doesn’t get the praise he deserves but he kept a house running, kids well and medicated all by himself. He managed to take Finley for his tube change. A milestone we have never achieved before as he has usually pulled it out or the Jej tube has migrated back into his tummy before the 6 months is up but he did it. He assured me that he was a brave boy and that he needed a big treat when I was better.

He has been seen by urology just before Christmas for some minor issues and will be having some surgery in the next couple of months.
He has also got to go in on Tuesday for a MRI brain scan under anaesthetic to check on the pressure in his brain. Fingers crossed for no change will be appreciated.

We are all just trying to get back into routine after Xmas. Day to day treatment stays the same regardless of the day but the days seem to fly by quicker at Christmas and deliveries get lumped together and its all a faff. Back to reality now.

Update 1st November 2015

Daddy had to hold down the fort at the beginning of November as I discovered I had gallstones. This started with immense pain and then I turned yellow and was admitted to hospital on the spot. As a nurse I make a terrible patient. I kept taking all the old ladies to the loo and trying to make my own bed. I must say Daddy did an amazing job. He cleaned better than me and managed all tube stuff. He did ring every morning to ask what Finley took to school but I’ll let him off for that. I’m home now but still feeling poorly. On the urgent list now for taking it out. Finley had a few appointments. They have noticed that he has developed a latent squint. He has needed new glasses and he has been having some jerky movement episodes, because of this he will be having a repeat MRI scan on his brain to check that the cyst isn’t putting pressure on anything. Hopefully it’s just precaution. We are looking forward to Christmas. Thank you for the cards that we have received already.

Update 1st October 2015

Finley has settled at school now, they are actually working with me and looking after him. We had issues with high gastric output for a few days early on in the month. Think it was his body being ready for his cycle meds. These are for bacterial overgrowth. They can be harsh meds but they work for Finley. His output slowed and he didn’t bloat as much. We nearly ended up inpatient with another aspiration chest infection but managed to ride it out at home with Finley being a superstar with his inhalers and letting us increase them as needed. We also had an adventure this month. We went to chessington world of adventure to see their Halloween weekend. We met up with our friends then we went to the Harry Potter studios on our way home. Best weekend ever. We would love to go again it was that good and even Finley loved it.I was such a proud geek mum when he asked if wingardium leviosa would help us put the Christmas decorations up. He has a cloak and instead of a wand used a sonic screwdriver. It’s incredibly cute.

Update 1st September 2015

Finley started back at school this week in a new class, a big boy class. We have had a couple of teething problems due to lack of training, such as giving him thin fluids when he aspirates. Then him ending up with a bad chest for the first week back. A case of not reading the health care plan properly but we are working on that and will get there. I think it’s always the same. So far he has enjoyed the new class. His new teacher is great and the support worker used to help Olivia and so isn’t scared of tubes. They are working extra hard with him on his reading and his number recognition. We know that these are the things that can be affected by the cyst in his temporal lobe.

Update 11th August 2015

Sometimes life is a blur, although it seems to have gone by so incredibly slowly some days, this month Finley has turned 5. My incredible boy has come so far and overnight has materialised into a cheeky, giggly little monkey.

He had a great day. He chose to go and see the fish at the Sea Life Centre, in Manchester. We have Merlin passes so this is a regular trip out for us. The Legoland Discovery Centre is practically next door too, so we can do both in a day. Lots of fun was had by all.

We also had a week at the sea side and it was so hard. I think we forget that a holiday for families like ours aren’t always a relaxing escape, it’s just day to day life made complicated by being in a small space away from home.

Finley spent the first couple of days/nights with group, he wasn’t tolerating feed, wouldn’t have anything orally and was vomiting up all of his meds. He was then spiking temperatures and ended up with a chest infection. I’m not sure if he aspirated on vomit the days before. Holiday was then spent trying to get meds into him and feed and keeping his temperature down. Still, we built a sand castle and had fish and chips on the sand. Well, the rest of us did. We were very happy to get home.

Finley seems to be struggling recently with food, he is having less and less and then what he does eat is things that melt to nothing or to liquid, like melon or strawberries. Anything else is just refluxed back. He still has a cough but I’m hoping that it is going to go soon and he can catch a break.

The dietitian appointment showed that he needs his feeds increasing too, as he isn’t gaining weight like they want him too and that is this month’s challenge. Hopefully we can increase without upsetting him and making him sick all over again. Wish us luck.

Update 6th July 2015

Our admission went ahead last month. However, in true Finley style, he pulled his Jej tube out the week before we went in and ended up admitted. They couldn’t get it in for the jejunal tube replacing so we were in on iv fluids. They put in a nasal jejunal tube which is literally a tube that goes up the nose and all the way into the bowel. He was very brave and kept this in until he could get his proper tube back in. It was the Friday before they could do this and then we went to London on the Sunday for tests. We still don’t have any answers from them yet but I’m sure we will in time.

Luckily he was feeling all better in time for his school trip to the cinema. He really enjoyed it and was excited to go on a coach.

We were also healthy enough to go to the Post Pals party in Surrey. Like last year, it was absolutely amazing, and we want to say a huge thank you from all the family for the work that goes into it.

Update 31st May 2015

We are gearing up for an admission to the Royal London next week. They are finally going to look in to why Finley keeps having internal bleeding. Finley knows that he is going to London but as of yet doesn’t know that he will be going to theatre or having to have tubes in his nose again for a day or so. We will tell him closer to the time but well wishes would be great for being brave. We have had a fun day out today going to Blackpool tower circus and the sea life centre for treats before our trip down.

We are also trying to sort school out for the next year. We need new teachers trained and risk assessments for P.E. I have to step back sometimes or I’d go mad. School miss the point of what we need sometimes.

Olivia wanted to say a big thank you to Becci who has been sending her monthly project gift. She really loved it. We are really grateful for all our post so I just wanted to say thank you.

Update 1st May 2015

Finley has continued to have bleeding from his stomach and our local hospital don’t seem to be interested at all, so this week we are going to see the gastro team in London and hopefully they can help him out. It’s awful for us to deal with him in pain and struggling with no plan to help. We are really hoping that we can get some kind of plan from them to find out where the bleeding is coming from and how to stop it.

He also seems to be coming down with something. There has been colds and sore throats going around and we are really hoping that it isn’t anything to worry about and that it stays off his chest so we can get down to the appointment safely.

Update 19th April 2015

Big news this month is that Finley finally got a hospital bed. It will help us so much. Practically to save us from hurting our backs lifting him or bending to sort him out through the night. Hopefully it will allow us to get more sleep by getting him in to a better position so he doesn’t choke through the night like he has been doing.

We also had a trip to the dentist. He has a little enamel that is bunched up. She thinks it’s probably medication he has been on while the tooth has come through but it could be him grinding his teeth.  Time will tell.

Gastro wise we are getting really annoyed as nothing has happened since our last update. No one is taking responsibility for him and arranging any of the tests or trials that he needs. In the meantime Finley is still having fresh blood draining from his stomach. He is still getting pain and bloating and horrid mucousy stools. This mum is getting more and more frustrated about it all.

On a lighter note, all three children have loved their post the last couple of months. It really does make a difference and cheers them all up. You should all have a warm fuzzy feeling for sending it.

Update 20th March 2015

Finley has been in hospital this month and worried us by having bright red bleeding coming out of his stomach. They think it is acid damage from the persistent reflux that just won’t stop. We increased his reflux medication and this has helped. We are now chasing up the doctors to try and get his scopes done to have a good look.

He needs a long list of tests but London and local are trying to decide who will do these and when, so in the mean time Finley struggles.

He very often (too often) gets a lot of pain in his tummy and this along with bloating makes him cry and no one will give us anything to try and help him. We have to helplessly listen to him screaming and shouting when we can’t help him. It makes my heart hurt. I hope they pull themselves together soon and do something or I will be putting in the biggest complaint.

Ending on a positive though. His new big boy bed is ready! He will finally be comfortable in bed.

Update 31st January 2015

We have had our second opinion gastro appointment at the Royal London hospital this month and I was really nervous. I tend to hide a bit when I’m worked up and had been the weeks before. We just really need some answers.

Every night for the last two weeks Finley has cried that his tummy hurts and he cries in his sleep. His tummy is distended a lot and he is begging for pink medicine or a dressing on his tummy. It’s heartbreaking and very tiring. We need a plan, some answers, and I want a happy child again. No one should have to live in pain, especially not a child.

I felt unprepared for the appointment like I should have a quick medical history ready for the doctor but with everything that has gone on with Finley there isn’t such a thing as quick. We got lost in the hospital, then I had to stop and give first aid to a lady who was having seizures until the crash team could get there. Finally we got there though and on time. We didn’t get to see the doctor we thought we were seeing, but it was still one of his team in though.

They took a very thorough history which took ages. In short, they don’t know what’s going on and they feel he is a complex boy. The doctor wants to talk to the doctor we were meant to see and then they will arrange the best tests to see if they can find out what’s wrong. He did say they do see Ehlers Danlos syndrome kids that do deteriorate and often it’s hard to reverse. Even though in some cases they improve with age, it is so hard for them to tell which camp Finley will be in. Finley was very cooperative. He scored 9/9 on his beighton hyper mobility score. No surprise really and it seems that he has EDS. They said the basics are scopes and biopsies and that he suspects he they might want manometry, but there is a few months waiting list.

All in all it was a good appointment where I felt listened to and they took on board my frustrations. They agree that the bloating can put pressure on a fundoplication wrap which would explain why Finley’s is herniated into his oesophagus. It could also explain why he couldn’t have a button Gastrostomy as they burst all the time.

Jack has also had a problem with his feeding tube. The tube had suddenly got 3 or 4 inches shorter and he could pull it back out as it hurt too much. He then hid it from us until he was in so much pain he couldn’t stand up properly. We phoned our hospital to tell them it isn’t right. I suggested to the surgeon on call that I think the disk holding the peg in had been digested past the pylorus and into the duodenum. He told me that this couldn’t happen. So I pointed out that it had once before. He spoke to our surgeon who agreed with me and told us to bring him in. Jack is so anxious of hospital and doctors that this wasn’t easy and it was really emotional for me. He was saying if you loved me you would let me stay at home.

On arrival they saw the state he was in and immediately called in a midazolam prescription. This worked really well. He was zonked out and doesn’t remember them pulling the tube back through into his stomach even though it’s pretty brutal. This I am thankful for. Then I had to sit next to silly drugged pre-teen as he came around. That bit made me laugh out loud.

Finley joined in on this with an eventful day here on Thursday. First our car wouldn’t start so we were late for school. Then I had to rush to work an hour late. I managed one patient visit and we get a call from school saying that Finley had pulled his jejunal tube out. Marvellous. My mum rushed to pick him up from school and I rushed home from work and we then spent the rest of the day at the hospital getting the tube put back in. Finley was super brave and kept still, looking at the X-ray screen of his tummy while they guided the new tube in. He had quite a sore tummy that night and going into the next day. It’s normal post placement and we gave calpol and cuddles. He has been back to his usual self today thank goodness.

Perfectly timed was a lovely gift from Post Pals, the children all got a wonderful balloon that had confetti in. Finley absolutely loved this. He is very much a balloon person, he spent days batting it around the room.

Also the big news in our house is that we are getting a bed!!! Does anyone remember us having the OT here a while back about a profiling bed for Finley? She was appalling and told lies and surprise surprise he was declined. We put in a complaint through pals about the OT in the end. It worked for us as the head of services rang and I told her how desperate we were. Apparently the OT was out of her depth. She hadn’t had to apply for a bed for medical need before and panicked a bit. They took Finley’s case to the big joint meeting they have to see if anyone could come up with anything to help and they couldn’t so the panel have reversed their decision and we will be getting a big boy bed. It’s really ugly looking but I don’t care. We might all get to sleep without Finley choking and strangling himself with his tubing. I can’t wait.

Update 16th October 2014

Finley is thankfully getting over chickenpox now. He is still scratching at a couple of spots but much better.

He has started school this term too and is full time. He is shattered as it’s a long day and it’s taking some adjusting for both Finley and me. It drives me mad that the school don’t give me enough information that I ask for and feel like it’s two sides and we argue.

He has had new peidro boots too, they are really high boots that hold his ankle so that he can’t get up on his toes to walk. They have taken some getting used to as they bruised his legs at first. They have been padded now and he is wearing them.

I spoke with genetics today. The Ehlers danlos syndrome geneticist. They have confirmed a partial diagnosis of ehlers danlos syndrome type 3 which is the hyper mobile type. We know that this doesn’t cover all of Finley’s issues and we will be still looking for them but it is nice to know that we have something that we can tell people.

His Microarray blood test has also come back and he has a variant of unknown significance on chromosome 14q21.2. They have said that they can’t find a syndrome on this branch so won’t be looking into it further unless other kids with similar symptoms come back with a similar variant. So thats interesting but just another little add on to the list of quirks that Finley has.

We are still waiting on the results from Finley’s blood tests and EMG tests to see if it shows any myasthia muscle weaknesses. Just more waiting. We have got several big appointments coming up that we are getting medical history together for. Rheumatology, neurology and then our appointment is through for the Gastroenterologist in London. A really big journey for us for an appointment but I have high hopes that they can help us.

Update 2nd August 2014

Hi, sorry it has been so long since our last update. Finley had still been having a lot of problems with his gastro-jejunostomy tube. He had previously had MRSA in the tube and it continued to cause problems so in June we had the tube re-sited. They surgically closed the previous stoma and cut out the affected tissue and then put a shiny new tube in its place.

Two days after this surgery we were in a bad car crash, luckily apart from some burns and bruises we all walked away, we just had to go via the hospital to have them check over as Finley was only two days post-surgery. That and the fact a 28 ton wagon doing 40 miles an hour hit us. We are still in a courtesy car now while we wait for ours to be repaired. They weren’t sure if they were going to be able to fix it at first but it was a brand new car (three months old) so was worth it.

We did manage to make the Post Pals party though and this was amazing as always. We met other Pals families that we have been talking to online or have met previously and the kids were spoilt. We all adored the animal show that was on and the children got to hold and interact with so many different animals. I even held a spider – brave at the time, but now I can’t look at the photo as I shudder! We drove home via Warwick castle to break up the journey and the children got to try out archery – even Finley had a go even though the bow was twice the size of him. He was over the moon that he hit the target.

Since surgery, Finley’s new tube had been very sore and much more painful that it was before. We hope that this is just because it is new but then on our sunny beach holiday to Scarborough this last week Finley came home with chicken pox. We couldn’t believe it, we had made sure that we had a week free from hospital appointments and from therapy and then he gets chicken pox! Poor boy is covered in them. He is doing really well but his new stoma site looks terrible now as it has spots on it. I’m hoping that they clear up soon.

We have some medical appointments and tests coming in the next couple of weeks, one could actually rule in or out a diagnosis for us. They are looking at a partial diagnosis of congenital myasthenia syndrome. This is relating to the trouble Finley has always had with low muscle tone, ptosis, trouble feeding, chewing, aspirating, respiratory distress and excess saliva. It would be nice to know either way. He is waiting for an EMG test but we are asking for it to be done with sedation as it isn’t very nice and involves putting needles into the muscles and then giving them an electric pulse to check the messages that flow between. I cant see Finley letting them do it otherwise. Then he has blood tests to send off to the specialist hospital in Oxford and urine tests too.

Finley’s big brother Jack will be going into hospital as he is having his feeding tube changed on Monday. He is very anxious about this and it never goes smoothly. He will be having a general anaesthetic and will be home the same day but he is very scared about it as hates hospitals and needles and is distrusting after being through this more times that he can remember.

First though, we have a birthday boy. Finley, our brave, beautiful, cheeky, loud, adorable boy, is 4!! He really has come a long way since he was born, that tiny preemie who spent his first days on a ventilator fighting for his life and has been fighting ever since and he is amazing.

We are really grateful for all the post that we have received for Finley, Jack and Olivia. It really is appreciated and makes a massive difference to our day. It can make a lousy day happy again because they get a card or letter that makes them smile. Thank you.

Update 30th April 2014

Finley is still having problems with his feeding tube. The stoma is too loose and this means that acid is leaking out. When it leaks out it burns the skin and makes it very sore and painful for him.

He is still growing staph in his swabs and also recently had a swab positive for a yeast infection. It has just been endless. We have been in touch with Finley’s surgeon and they have decided that the site needs to be re-sited. This means removing the whole tube completely and starting again in another location on his stomach. This will hopefully allow the skin to heal up. We are just waiting for a date for this now.

We just had an appointment for eye clinic to check for any pressure in his brain as he had been head banging and rubbing his eyes all the time and the cyst that is in his brain is just behind his eye so they keep tabs on it. As far as they can see it looks reassuring.

We have neurology appointments coming up to check the results of his microarray and other tests that he had done. We found out that there is a deletion on one of Finley’s chromosomes but unsure whether this is related to any of his issues/a chance for a diagnosis or not. We will have to wait and see.

Good news today is that Finley got a school place for September. We got our first choice which is the school he already attends the preschool in and his sister goes to. This will help transition as it is the same staff and building that he is used to. He just has to learn to stay all day. It’s great as the staff already know him and have some experience of looking after him. They will have to up their game though as twice as much time there means twice as much care. We will start getting them ready for that as soon as our community nurse has arranged a meeting to see what support will be needed for when he is there a full day.

Update 9th March 2014

Since our last update Finley has had two emergency tube changes and the last one last year was a long job. As always, we had to go into hospital for iv fluids to keep Finley’s blood sugars up in a good range. We had the tube replaced and it was in angioplasty theatre so Finley got the surprise of his mummy dressing up in scrubs. It seemed like an easy placement but when we tried to start feeds it didn’t go well. Finley was retching, floppy and in pain, so we had to stop them almost immediately. The tube placement was checked and was fine but it took a week for us to be able to get full feeds running.

In November, Finley’s reflux was awful and he ended up in the hospital having aspirated. We were sent home with inhalers to try and clear his chest which have helped him when he gets wheezy but sadly he is still refluxing a lot and his medication has only limited use.

We have lost our gastro doctor as well since our last update. We went for our appointment and it was a shambles; the doctor had no notes, didn’t know what was going on. They suggested that Finley might need a surgery that he had already had and ended our appointment with ‘you seem to be doing a good job so keep going, he might grow out of it’. He didn’t realise that it wasn’t just reflux that was going on and didn’t seem bothered so we won’t be seeing him again and are on the look out for a good gastro doctor who will actually take time to listen and try and help us.

We all had a great Christmas at home, lots of noise and gifts. We absolutely loved the elf parcels that we were sent from the wonderful Post Pals volunteers and I was humbled and a little emotional about the effort that had gone into the gifts and how much love there was around the children this year.

This year so far has been a bit of a blur, it seems to have flown by in a blitz of appointments. Finley has been seen by wheelchair services, who are going to get him a chair that will support him when needed. He has had new boots and new insoles made. We have also seen a very lovely neurologist who was actually interested in our history and wanted to look into congenital myasthenia syndromes for Finley as he seemed to meet some of the criteria for this. She was surprised that with three similar children that we weren’t followed by genetics for studies and was arranging this for us.

We have been drowning under Disability Living Allowance forms. For those who don’t know, you have to fill out a 43 page form detailing everything wrong with your child and everything you need to do for them. It is a miserable form to fill out and then provide evidence just for them to scrutinise everything. I am unlucky in that all three of the kids forms are due in the same 5 month period so I have back to back forms to fill out. My poor printer.

Finley has also developed a new trick. Every so often his circulation to his fingers, hands or feet just stops, it just goes drip white and waxy. It reminds me of raynauds syndrome but he isn’t always cold when it happens and it doesn’t happen every time he is cold, so it’s a mystery. It’s just another thing to bring up with the doctor when we see them next.

More recently finley has been having a lot of problems with his feeding tube site. The actual stoma around the tube rather than the tube. It has been sore and leaky for 3 months now, getting over granulated and bleeding. Six weeks ago it was swabbed and we found out that Finley has MRSA. Just around the tube site. It has been a nightmare. We had a week of clarithromycin to try and clear it and have been using anti-microbial dressing on his tummy but it has still got worse. It is now breaking down as the hole is getting bigger around the tube causing acid and feeds to leak out which is then irritating the skin. Our nurse has just re-swabbed it yesterday and we are waiting to see if it is still MRSA and if so what we need to do. There is talk of having to go in for iv antibiotics but we are hoping to avoid that if possible. We need to get it better as Finley has started waking up through the night crying that his tummy hurts and that it is itchy.

Update 2nd November 2013

We have had a nice lull in appointments this month, it has been nice to not have to run around frantic. We did manage to speak with the disability social worker this month regarding respite that we have never had before. Whilst she was here she was asking about school and I told her about the concerns that we have about supervision and about them not changing his nappy. She has spoken with school and called a meeting with them about Finley to discuss all of this. I’m feeling nervous and guilty now but will have to put my big girl pants on and get on with it.

We finally heard from neurology and they will be seeing us next month along with a follow up gastro appointment and getting Finley’s eyes checked. I have a heart scan booked for myself next month too. So it’s stepping back up again but it was good to have the break.

Update 29th September 2013

Finley started school this month which has been so nerve racking for us all. The school didn’t realise what they were getting. This on top of several hospital admissions has made a really hard month for us all. School don’t know Finley yet so are slowly trying to pick up his quirks and ring me in for little things. I still worry sending him everyday but I think after this month they have finally seen just how quickly Finley’s health can change.

He was at school a week last Wednesday and had a reasonable day and by bedtime was in an ambulance to the big city hospital. His jejunal feeding tube had displaced and his gut had rejected it back into his stomach so he could no longer be safely fed. This led to iv fluids and a trip to radiology to have it replaced.

Saturday we had a trip to London, whilst on the train the end came off his gastrostomy tube and took the jejunostomy tube out with it. We were stuck on the train in the middle of nowhere panicking that we needed urgent medical treatment. Thankfully a friend told us to go to UCLH hospital in London. Here they placed an NJ tube which is a tube from his nose right down into his bowel. This tube took 10 hours to place, lots of pinning down and pushing it further into his nose. Every 30 minutes they came to push it in. Finley needed yet another iv. Three attempts to get access leaving him with three big bruises.

We managed to leave the hospital the next day with the NJ tube in and got to the wonderful believe in magic party, which was the highlight of the month really. He was draining loads of bile from his stomach after it had been upset so much. This caused a problem for school as they couldn’t manage it and then on Wednesday night the NJ tube came out again, requiring another mad dash to the city hospital for iv fluids. We finally managed to get out gj tube put back in on Thursday and Finley was so so brave. He laid and let them replace it, probably desperate to get home and no more cannulas.

I’m definitely hoping that next month is better for us all. It Is so hard on Finley to have to go through all of this and I was so tired from staying up 3 nights in a week. The big kids were upset that we had to leave them again and tired because they had to get up early to go to my sisters so that my husband could go to work. It hits everyone when someone is sick.

Our post has kept us all going. It is lovely to get a smile when life is hard.

Update 16th September 2013

I have had an absolute nightmare this month trying to get everything ready for Finley to start school. Trying to pull our medical team together to train and speak to school and school haven’t made it very easy. They seem to be keeping who his keyworker is a secret. Not sure if this is a ploy so that we don’t know who to harass!

Finley will be starting school without a statement as we were told that because his problems are medical and not educational then we need to collect evidence of need. This is making me want to panic and wrap my boy up. Our social worker wasn’t happy, yet everyone else keeps patting me on the back and telling me he will be fine. Or that all mums are upset when their child goes to school.

Finley has been miserable with reflux this month. We found out that his fundoplication surgery that he had to stop his reflux had herniated into his oesophagus making him uncomfortable and making his reflux come back. This will need surgery but because it is a bigger surgery to take the wrap down and build it up again, they would like to hold off as long as they can, so we have started back on reflux meds and will see how long we can get them to work for. I feel his pain, I hate heartburn.

We even managed a small caravanning holiday this year. We just went to the local seaside so we were close to home but the weather was sunny and Finley loved the beach. We made it through with only minor issues. We did have one trauma but it was Olivia. She picked Finley up and caught him funny and he pulled out her feeding tube and it fell onto the dance floor. Queue one screaming Olivia, one very confused Finley and a slightly green first aider who had to see me putting it back into her tummy and wrapping it up in a bandage until we could get back to the caravan to put the new one in. Once back in Olivia was fine and danced the night away. Brave kids I have here.

Finley would like to thank everyone for his birthday cards and gifts. He had a great birthday.

Update 24th July 2013

We have had a month of trying to get two children into school. Finley starts the school nursery in September and they aren’t used to dealing with children with complex medical problems. Jack, my eldest, is also starting high school and he will be going with a feeding tube, adhd and seizures and I don’t think they are used to any of those either really so lots of paperwork and stress for me.

We did have the fantastic opportunity of attending the Post Pals party and we all had a wonderful time. It was lovely meeting Vikki and Kate, other Pals and talking to other parents. Finley really enjoyed singing hands and we sang along. He had a roll in the ball pool, cried on the bouncy castle, even licked the icing off one of Holly’s dads wonderful cupcakes. We will forget that he also fell over and bust his lip and bled all over. The big kids loved everything from the big slide to the face paints. Both had several tattoos by the end of the day and oh my gosh, the raffle! The kids came away with all sorts and then amazing party bags.

I think a huge thank you to all the staff and volunteers is in order for all their hard work. A sorry to Becky Rideout for Jack repeatedly asking her for batteries for the remote control angry bird.

We had lovely weather the whole weekend and finished the weekend off with a trip to Chessington on the way home. We had some very happy but very tired children. Thank you.

Update 9th June 2013

Finley has been in the hospital for the last week. The little monkey managed to pull his jejunal tube out. He was chewing it and we think the end fell off.

Our local hospital can’t replace these tubes, so off to Leeds we went at 10pm.

We have a problem with Fin in that we don’t know why he needs to be jejunal fed, he has no diagnosis that explains why he is like he is or why his tummy doesn’t work. This means we have a hard time trying to explain why he needs the jej tube and this time was no exception.

The reg doctor comes around at about 2am trying to tell me that this was obviously a great opportunity to test Finley’s tummy. Giving it the whole speech of it worked for two years and we don’t know why it stopped working. I did tell them that nothing had changed and the only reason Finley had been doing well was because we had started to jej feed and vent the stomach, but what do I know? Gastrostomy feeds were started and for a couple of hours things weren’t too bad but suddenly Finley started sweating, he was crying in pain and he went floppy in my arms. It was awful. Eyes rolled and he started retching. Luckily the nurse was with us and she called the doctor.

We emptied all the feed from his stomach and were able to leave his tummy on free drain. He was getting more and more sweaty and his heart rate was racing. He was having a hypoglycemic attack with sugars at 3mmol/l. Finally the reg came back along with our much loved surgeon. They ordered the feed to be stopped and left off until the jejunal tube could be replaced. Fin had to get iv access and spent the next three days on fluids. He was getting glucose to stop the hypo and then extra fluids to replace what he was loosing from his g tube. All the rest of the day Finley was so low toned that he couldn’t even sit up in his buggy that has extra support. It was like having a newborn all because no one listened to me.

He then went to radiography to get his jej tube replaced. This is scary for such a young child but Fin was a hero. It’s a huge X-ray bed with the X-ray machine over you that moves. Big screens next to your head too. Then everyone, including your mum, dressed up funny in lead clothing, making you lay still. I’d be frightened, yet my 2 and a half year old hero laid there. He cried a little and got hot but he didn’t move. He let the staff do their job and got back to the ward. We had a slight mishap though as the tube placement hasn’t gone as well as we hoped and within 20 minutes of starting out feeds the jejunal port came out and the tube fell out. This was heart breaking. Finley had to go back on iv fluids and we couldn’t come home. It also meant that we had to go through the whole scary X-ray machine again. Again, Finley did great and this time mummy made sure the end was secured properly and as soon as feeds were running again we started packing. I managed to speak to our surgeon whilst in there and our concern of still not knowing what’s going on with Finley’s gut and he has arranged some contrast tests to have before we see a gastro doctor to try and look into the issues more. And as awful as it was to see, the hospital have seen what happens when we try and feed Finley into his tummy.

It has been so good to be home and although both Finley and I have come home with chest infections, his tummy has been more settled and we are very glad to have our much needed jejunal tube back in place.

Update 29th April 2013

We have had many appointments this month, mostly for Finley and some for his brother and sister. Lots of extra bits to add to our list. We were assessed by a new physio and a rheumatologist that were surprised with just how hypermobile he is and added some official words to our list of symptoms such as global hypotonia and global hypermobility. It was shock to add sensory processing problems, proprioception dysfunction, poor saving reactions and depth perception, balance and coordination difficulties, poor core stability and muscle power to maintain erect posture with challenging activities, difficulty in motor planning, judging distances, negotiating obstacles etc and poor foot posture. They don’t change Finley as a person but add extra words when explaining what is wrong with our little man.

He has needed three different types of antibiotics this month to try and clear an infection in his jejunostomy tube. We need to clear it as while his body is fighting the infection he is reacting to everything again. His face is red and angry all the time. His tummy is permanently pot bellied now and he has been getting a sore bum. We are still waiting for a new gastro referral to try and get to the bottom of why his tummy suddenly stopped working and that he started to react to things that he hadn’t ever had a problem with before.

We are also still waiting on a cardiology referral so that he can get an ECHO done of his heart to check for floppy heart valves. He already has persistent tachycardia but needs this scan doing soon.

We have therapy services coming out Friday to see if his current seating is suitable for him and will be asking if there is anything else available to help us at home.

We have been so overwhelmed in a good way with the post that we have received as a family. It is such a great feeling that people have thought of us and we’re so grateful for the smiles that have been put on the kids faces. They have had so much excitement opening mail. It makes life a bit happier. We are very grateful to everyone who has found the time to send a card or gift to Finley and his siblings this month. It is amazing how much they cheer them up on a bad day and we have been humbled by peoples generosity. Thank you everyone.

Please DON’T send food to Rowan or any of his siblings, and NO LATEX i.e. balloons, rubber masks etc, as Cameron is severely allergic to latex, so please do not send anything containing it to the whole family.

Story written 2012

Rowan was born at home unexpected but on time. Apart from being told we were having a girl (and he was a boy) and he was cold due to being born in the bathroom with the windows open, the midwife said to his daddy that all was “normal”.

For the first six weeks of Rowan’s life it was a whirlwind of no feeding, force feed, trialling formulas, projectile vomiting and screaming, along with a complete lack of weight gain. This carried on for 18 months. They tried an ng tube, force feeding, an nj tube, surgical jejunostomy, solid foods, ANYTHING to get Rowan to gain weight and nothing worked. Rowan was under GOSH as well as our local hospital and no one knew what to do. At 18 months old and weighing just 9lb12oz, Rowan was admitted to GOSH and we were told to “expect the worst”.

The next 8 months GOSH was home, full of ups and downs. Rowan had a Hickman line inserted and started TPN. For the first time ever Rowan began to gain weight consistently and went from strength to strength. As this happened a lot more medical problems began to arise. Rowan had to undergo a huge number of tests to get to the root of his weight problem and these tests are still ongoing. Our biggest battle will always be with his calorie requirement. The average child needs 90 calories per kg. Rowan needs a minimum of 240 calories per kg. He has the same number of calories as a fully grown man.

Rowan emerged from GOSH almost twice the child he was when he went in. Rowan has a lot more energy, a huge personality, and is making huge leaps in all areas. As I write, Rowan is awaiting more tests at GOSH and his calorie requirement has increased. Rowan may be the size of an 6 month old, but he has defied the odds, fighting his way through life with a very cheeky grin and a little bit of attitude!

Update 12th September 2019

Rowan had his central line removed yesterday, and a port inserted.  He’s no longer on TPN.  And while he’s still ‘poorly’ and in pain etc quite a lot, we have had lots of conversations, and decided there are children much poorlier than him, and he’s decided to move on from post pals and allow another child the delight of happy post.  He’s sad he’ll be moving on, but he knows it’s the right decision to make.

Thank you to everyone for all the memories, all the opportunities, all the parties, projects, letters, cards, pictures and the amazing opportunity to stay at chessington.  We’ll be sad to go, but happy someone else will be able to have the opportunity to smile when it feels like there is nothing to smile about!

A special thank you to Bev, Kim and Stevie, Marty Longo and Sarah and Fudge, for just being awesome!

Update 7th November 2018

Sorry it’s taken so long to update on Rowan, time goes by so quickly sometimes! On the whole Rowan has been quite well. Rowan is now on hydrocortisone as he has added Multiple Pituitary Hormone Deficiency (MPHD) into his list of ‘issues to contend with’ and will be on steroids for the rest of his life, it’s just another risk to manage. We have been back in hospital more recently to check that the level he is on is correct.

We have had a couple of other admissions around central line infections, infections around the various ‘holes’ in his body, and we are currently battling with one of those right now. Rowan is colonised with Staph Aureus, however that has now become MRSA. He’s struggling a lot with pain and fatigue, and it’s hard to know if this is deterioration in his management, due to the infection, or if we need an increase in meds, as he’s finally growing like a weed!

Behaviourally and emotionally however, we are finding things very difficult. Rowan has seen a psychologist and we are trying to work with him, however it looks like he is emotionally ‘stuck’ at a 3 year old stage. Imagine toddler tantrums in a 9 year old, he has a lot more weapons in his armoury than a 3 year old though unfortunately! This has also meant, that despite not being developmentally delayed in any way, he is torn between playing with younger children’s toys, and age appropriate toys. He seems to currently have a real liking for toys where you press a button and it lights up/makes a noise. He also is very attached to his baby Michael.

Thank you to those who have sent Rowan post, I know we don’t post as many pictures as we usually do, things are just particularly difficult at home at the moment, especially with Ayden, possibly struggling with ADHD/ASD, we are waiting for assessments. He has a habit of running off, with no consideration for danger, so it’s particularly difficult. We want to say a massive thank you to Sarah and Fudge the cat, who always sends the BEST monthly projects!! Also to WendyWoo for the fantastic drainage bag covers! Rowan loves having such a wide range of choices now! Also, to Marty Longo, Rowan loves the consistancy of receiving cards from you, from such a long way away! Rowan has also been receiving letters from a little girl who goes to ‘pen pal’ club at school, and he has written back to her, and received another letter! We are hoping to write another letter to her over the weekend. It’s nice to see him excited to write to another child of a similar age! Thank you post pals for everything you do for all the children.

Update 15th October 2017

Generally Rowan is doing ok!  Since the stoma prolapsed in June we have had lots of issues with controlling his sodium levels and his output being really high and of not great consistency.  Literally this week his sodium levels are FINALLY where they are meant to be, we had to increase the sodium in his TPN twice to get it to work, giving him sodium supplements through his tube seemed to do nothing.  I was more than a bit gutted as I thought we could start weaning down the TPN a bit soon, but I don’t think that’s going to be happening for a little while.

Rowan also appears to be colonised with a fungal infection, Candida and no matter what we treat it with, it’s not going away.  The risk is that this translocates to his Hickman line, and Candida is one of the worst bugs to treat :(.  So he had a specialist swab done to see exactly what we can use to treat the infections, as he has more than one strain of the bug, and go from there hopefully!

Over the summer we spent 3 weeks in hospital with a very poorly Rowan, he had a line infection Klebsiella, and it was very scary for everyone.  He ended up in the critical care unit in Oxford as we transferred from the hospice.  From there we made it to our local hospital only for him to deteriorate again :(.  Rowan was really upset, as were his brothers, as it meant our days away had to be cancelled, again.  So it wasn’t a particularly great summer, but we made the most of it where we could!

Following this particular bug, it was noted by the hospital that Rowan has some really bizarre issues with Tachycardia that have developed.  We’re not sure what this is all about at the moment but we’re keeping an eye on it for now!

In the meantime Rowan is struggling more emotionally than physically.  He’s angry a LOT.  He’s struggling with his pain levels as he is not listening to his body, and his fatigue is also an issue as he’s refusing to rest.  He’s hating being small.  He doesn’t want TPN or feeds, or having to go to the hospital anymore, and he currently doesn’t like school.  Everything is a battle at the moment with lots of tears.  He’s even playing up in school.  We are waiting for play therapy but at the moment we won’t even seem to be on a waiting list anywhere.  Everything is so slow, and at the end of the day it’s only going to get worse if we leave it.

Thank you to those who send Rowan post, especially Sarah and Fudge, Kim and Stevie and Marty Longo, also thank you to Zara and Raffle pals for the amazing gluten and dairy free chocolate hamper!  It went down very well and caters to the boys dietary requirements really well.

Can people PLEASE not send food to us.  The boys ALL have food allergies, and I have had to confiscate a number of food/sweet items from them.  Can we also make sure NO LATEX is sent, this includes balloons (unless they are foil).

Update 15th February 2017

This month Rowan has been doing well. Lots of appointments over the last 6 weeks or so, endocrine say he is growing ok now he’s on growth hormone and even though he still isn’t on a centile for his height he’s in proportion with his weight and that’s the most important thing. We will see them again in six months as we’re having a few issues with his blood sugars dropping too low when he’s not on his TPN (he’s getting 5 hours break currently!) and him becoming extra tired and grumpy, but for now it’s a case of just watching and waiting.

We went to see the gastro team as planned and we really wanted them to reduce the amount of TPN Rowan is on, but it wasn’t to be. They have decided, this close to surgery, we need to just stay as we are, as he is currently stable and we don’t want to rock the boat, plus, it’s possible we will be back to 24 hour TPN temporarily and we know the amount he’s on currently keeps everything ticking over nicely.

Rowan is due to have Ileostomy surgery on the 1st March. He’ll be in Great Ormond Street for approximately 2 weeks. This is quite big surgery for Rowan, and the recovery time can be rough, as well as adjusting to a new way of life. However, we are hoping this will improve Rowan’s quality of life long term and the aim is to reduce the TPN, and hopefully one day, get him off TPN altogether.

Thank you so much to everyone who sends Rowan and his siblings post!! Especially Sarah and Fudge the Cat! If anyone has sent Rowan little Lego sets, or craft sets, we have saved them for when Rowan goes for surgery as these are perfect for those times when he is bored. During the recovery for the next surgery, I am hoping the post he receives will lift his spirits. Thank you to everyone for everything that is sent!!

Update 28th January 2017

Since the last update, Rowan was transferred to GOSH by blue light and was incredibly poorly. In the end they took his line out, and replaced it with a new one. Unfortunately due to a lack of central venous access they have had to use Rowan’s femoral vein. This also means he only has ONE vein left in which a Hickman line for TPN can be placed. This is not a good situation to be in. Rowan is currently dependent on a Hickman line to sustain his life.

Since September we have tried to carry on life as usual and not worry too much about the ‘what ifs’. We had a week at Helen House in December, which was rather more hard work than it should have been, and some of Rowan’s pain medications were adjusted to help him, however we had a lovely Christmas at home together which we are very grateful for, and thank you so much for the all fantastic elf parcels, reindeer letters, monthly projects and post that came. Rowan has also been trying an extra hour a week at school for enrichment time which he absolutely loves!! This takes our total up to 16 hours a week of school, the most he has ever been there!!

Since the beginning of the year we have been waiting on tenterhooks for a date for a large surgery for Rowan. Nothing can really change or move forwards until this surgery has been completed. He is having an Ileostomy placed. This is a step that hasn’t been taken lightly at all. Neither Rowan nor I are adjusting to the news very well. Surgery will now be in March, after a lot of messing about, we still don’t have an exact date. This will be a massive adjustment for Rowan, and he is currently finding the idea more than a little but upsetting. The admission to GOSH is likely to be 2 weeks. As always though, post pals post gives him something else to focus on, and to distract him from it all for a little while! So thank you!!

Update 9th September 2016

Late last night Rowan was transferred to HDU. He was very poorly for most of yesterday, he drifted in and out of sleep until the middle of the afternoon. He wasn’t eating or drink or talking or even sitting up. He didn’t even have the energy to boss anyone around. Constantly spiking high temperatures despite IV paracetamol, and being on day 5 of antibiotics. Last night we did bloods, and they came back not looking good at all. Although he did manage 90 minutes of crafting in the activity centre and a few rounds of Mario Cart with the pink ladies before becoming overwhelmingly exhausted once again.

So, he was transferred to HDU where he had a fluid bolus as his Blood Pressure was too low, and he had his antibiotics changed a little bit. So rather than having ones that are once a day, he has 3 that are once a day, and 1 that is 4 times a day, he is on gentamicin, teicoplanin, micafungin and tazocin, all IV antibiotics. He has complained during the night of a bad headache, which tends to go with a line infection, although we don’t usually have that for more than a day or so.

So we are now on day 6 of the line infection saga, and he seems to be deteriorating, not improving. If he doesn’t start to improve in the next 24/48 hours, there is talk of transferring us to GOSH. Fingers crossed these new antibiotics help a lot more, and put him back on track so he can start bossing people around again.

Update 14th August 2016

Rowan is currently an inpatient at our local hospital and has now been in hospital for 2 weeks.  His central line broke inside his chest causing a great deal of pain.  This meant we were in hospital on IV fluids awaiting a line change.  This happened last Friday, it didn’t seem to go to plan, with much larger incisions than previously, a new exit site, and lots more bruising and discomfort. Since then he has spiked really high temperatures.  After a week of testing and waiting for results we have found he has a really, really bad infection in his various sites and wounds.  We thought putting him on the right antibiotics at a high dose would sort him out, and we were hoping to go home ASAP. However, 3 days into these high dose antibiotics and he is still spiking temperatures despite regular paracetamol and ibuprofen.  This is not a good sign.  To make matters more complicated, his brand new line won’t bleed back, so we can’t keep an eye on whether this has spread to his line or not, and previous bloods showed his liver was struggling too.  Rowan is becoming more and more frustrated and downhearted. This is the summer holidays, he is meant to be having fun, many days out have had to be cancelled unfortunately, and he is getting more and more upset as time goes by.  As he has got older he is far more aware of his difficulties and right now he is frustrated with himself and his body that he isn’t getting better.

All we can do right now is wait until the right doctors are available at GOSH to find out what the plan is.  Being in hospital this long, unplanned, is taking its toll on everyone, especially Cameron and Ayden, who are being farmed out wherever possible or spending hours and hours each day at the hospital, missing out on their summer holidays and all the fun things we had planned have had to be cancelled.  We are really hoping things are sorted this week, as we’re meant to be going to the hospice next week for a break, a bit of touristy stuff, and some R and R.  We haven’t been for such a long time and are really hoping for a turn around this week.

Update 8th June 2016

After our hospital admission we continue on our rollercoaster.  Rowan’s weight is up and down, as are his pain levels and fatigue.  His reflux is becoming more problematic too.  While we love the warmer weather it wreaks havoc on Rowan’s body.  He is extra pale and extra tired, so we are waiting to see if they want to give him more fluids in his TPN.  Unfortunately, we haven’t made much more progress with his feeds, some days are better than others.  Progress is painfully slow with lots of side steps, but we’re doing everything we can!

We heard this week that funding was approved for Rowan to re-start growth hormone treatment, so we are just waiting to hear from the company to arrange this.  We tried it before and it didn’t work, but the team decided it was worth another shot as the difference between him and his peers is really really obvious now, he is a perfectly proportioned 3 year old, only he is 7!

On that note, I just wanted to say a HUGE thank you to everyone who sent Rowan a birthday card. I honestly think that’s the most cards he has ever had!  He LOVED them!  We went to West Midland Safari Park for his birthday and he had an absolutely fantastic time, it is his favourite place ever!  We are spending quite a lot of time busying ourselves with some fantastic days out, travelling around the country and we can’t wait to continue them especially now the weather is warmer!

Update 25th January 2016

Thank you to everyone who sends post, whether it’s a one off or regularly, every letter really does count.

Rowan just came home after almost 3 weeks in hospital.  It was a long, gruelling process, but we may be uncovering some more answers with Rowan’s gut.  We have successfully managed to reduce Rowan’s TPN hours to 20 a day, and with a small amount of feeds the other 4 hours.  It’s a huge achievement and I am so proud of Rowan. It does cause pain, and there is a lot of stomach distension and other issues, but we’re doing the best we can.

During this time the other children were in foster care and had a rough time too, but we are glad to all be back together. It will just take time and patience to adjust.

Post is instrumental for Rowan through the bad times of the week. It focuses his mind on something else for a few minutes, other than being uncomfortable and grumpy.  Thank you, again, for everything you do!

Update 25th July 2015

Rowan has been quite poorly but is finally over the worst of it. He still has a central line site infection which is driving us both insane! We have just got back from a 2 week admission at GOSH. We went for physio rehab and it was a very rough 2 weeks, but he has made some lovely friends and they bonded really well. However, apart from an improvement in his balance, I can’t see any noticeable difference in him. He also lost 1kg while we were there which was weight he didn’t have to lose! The gastro team have changed the plan to hopefully fatten him up again.

While we were away at GOSH, adaptations on our house began and in fact are almost finished. A ramp outside the front and a wet room have been installed. The through floor lift should be finished Monday, so I have been busy decorating Rowan’s bedroom and the bathroom… minions of course!

As always, Rowan likes to make life complicated. The theory behind him having no central access is that he has lots of little clots in his veins, preventing the access, which would also explain all his very prominent veins that have worsened over time on his chest/neck/face. He has also been suffering with headaches. All his blood work looked fine so it wasn’t dehydration or anything else. I decided to go and get his eyes checked, as sometimes it’s hard to remember the ‘normal’ things it could be when you have a child as complicated as Rowan! It showed that he has a small prescription but nothing worth worrying about. However, he has reduced 3D vision and his eye muscles are having to work extremely hard to focus, which is resulting in double vision when his eyes get tired. A referral to ophthalmology at the hospital is the result and I have to watch him on the stairs/kerbs/uneven ground.

As always, we try to live our lives to the fullest. We are going on holiday soon and I think we are all looking forward to it as it’s been a very rough few months!

Thank you to everyone who sends post. The post has been a fantastic distraction and a welcome reminder that someone out there is thinking of Rowan while he has been so poorly. It continues to be well received!

Update 4th July 2015

Thank you to everyone who has sent cards, letters and postcards to Rowan and his siblings. His favourites are Kim and Stevie, Sarah and Fudge, Marty Longo, and the ones he gets from various schools. Thank you to the amazing paper cutters out there who have provided us with 5 exceptional pieces of art! I can’t wait to get them hung on the walls!!

Rowan continues to battle infection after infection. He recently had to go to GOSH for an urgent line replacement, however this did not quite go as smoothly as it should have. Rowan is lacking central access, which in theory he shouldn’t be at all because he has only ever had 2 lines. This is another part of the Rowan Puzzle. Since then we have managed to clear the infection from his line, however we have a persistent line site infection. Rowan’s new line site is also infected and it’s extremely sore. The stitches had to be cut out over 5 weeks early due to the swelling and infection making the situation unbearable. This then makes him extremely tired and struggling to maintain his body temperature with him just wanting to constantly nap. He has now missed 4 weeks of school and he is getting very down and very sad and he just wants to go to school. Unfortunately he just isn’t well enough and the couple of times he has tried they are phoning me after an hour to go and get him again.

We have just arrived home from a few days at the hospice where Rowan had his nails painted, went in the spa bath, and generally caused chaos (as usual)! This meant that I could go out for my birthday – the first time I have been out in 2 years for a few hours. It was just in time as we are heading to GOSH on Sunday for 2 weeks intensive physio rehab where we are hoping to gain some strength and muscle tone. It means another 2 weeks off school, but he should be good for the last 2 days of term. He will be saying goodbye to the best teacher I think he could have ever wished for.

Update 2nd May 2015

The last 8 weeks or so Rowan has been really quite poorly. Something as simple as a bug evolved into bacterial tonsillitis, which then manifested as referred pain. He then had a line infection, which required 2 weeks of antibiotics, and an urgent blood transfusion.

Hopefully Rowan is now on the mend after his weight plummeted to less than 12kg. We went to clinic this week and rather than discussing an Ileostomy as everyone believed that was the next step, the motility consultant said no. Therefore that is now not the plan, and the plan is, no plan. How we are right now, is the plan. It’s far from what I anticipated, as the simple answer is that they just don’t know what’s wrong or what’s going on, or which non invasive tests they can run to find out. The results from January do show a problem, but at this particular moment in time it’s irrelevant as he is still un-feedable. It was all a bit of a shock!

Rowan had his birthday last week and was a very lucky boy. Thank you to all those who sent him cards and presents! He had a fantastic day with his friends at his first ever birthday party. Friends and family came from all over the country to celebrate and he thoroughly enjoyed himself. Thank you for making his day extra special.

Update 26th January 2015

I just wanted to start by saying a big thank you to everyone who sent Katrina, Cameron, Ayden and Rowan, Christmas cards, letters, gifts, reindeer letters and elf gifts. I know a lot of time, thought and effort went into those and we thoroughly appreciate it.

Rowan has been very up and down with his gastro issues, one day he is ok and the next 4 days he is in agony. As always, he faces things with a smile and a determination. He wanted to try Turkey on Christmas day, so, along with the festive spirit I plated some up for him. Unfortunately it didn’t go too well, but you’ll never know if you never try.

We started 2015 with a 3 week admission to Great Ormond Street Hospital. It was a planned admission, but also a very difficult admission for all involved. It requires lots of communication and lots of organisation which inevitably went very wrong some days. However, despite the tortuous pain Rowan had to endure for the first week, we made it through, although he is clearly still considered ‘unfeedable’ and therefore for now TPN is his life line. He had a brand new gastro test, which has some very interesting preliminary results, which are beginning to show what is happening in Rowan’s system and how completely unique that is. Once the official results are in, it’s time for conversations as to what happens next and what our options are.

The third week we were handed over to the endocrine team for some repeat tests. The main aim was to see if Rowan could manage any time at all off of his TPN, to be free from so many wires, and be able to ‘run around like a hooligan’ as Rowan put it. The short answer to that was no, but again we need to wait for the official results.

The pain team also came to review Rowan and he is now a very proud owner of a TENS machine. He absolutely loves it and it really helps with his back pain especially.

For now we readjust to family life once again, and begin the painstaking task of trying to get Rowan to regain the 1.3kg he lost in those 3 weeks. Hopefully the next time I update there will be a more concrete plan in place.

Update 10th October 2014

Last time I updated Rowan was due to go to GOSH. We arrived there and due to Rowan’s haemoglobin level being too low the whole admission was cancelled. From there on it snowballed; by the Friday of that week he was admitted to our local hospital as he had a temperature which then transpired was quite a nasty line infection. Obviously this causes great concerns as line infections are a huge risk. Rowan spent that whole weekend in hospital and started IV antibiotics and had several fluid boluses as well as a blood transfusion. The next 2 weeks were filled with hours each day infusing IV antibiotics and drawing them up, mixing them, as well as ensuring all his blood work remained stable. It was a very demanding regime.

Rowan finished the antibiotics on Saturday and by the early hours of Monday morning he was feeling unwell again. Today (Friday) Rowan had to be collected from school early and taken to hospital. The bug is back that he had at the beginning of September. So once again we resume the very same regime of IV medications to hopefully make Rowan feel a lot better, and hopefully get rid of this bug well and truly.

Rowan has now been septic for almost 2 months solidly and it’s taken a toll on him, he is sick of feeling rubbish and missing school, and he is also getting frustrated that he physically can’t do as much. He has lost strength and stamina in his muscles and this is causing lots of problems for Rowan, but as always, he approaches each situation with determination, a big cheeky grin, and just a pinch of attitude.

Thank you for Rowan’s post. Rowan now recognises Marty Longo’s post without even having to open the envelope and he is always excited to receive post from Kim and Stevie. Please can I remind people not to send balloons to us though as Cameron has a latex allergy.

Update 22nd August 2014

Rowan has been on 24 hour TPN now for nearly a year. It’s been hard work, they still can’t get his levels right, this time his potassium and sodium are very low. He also had a line infection a few weeks ago and he was really quite poorly in hospital but he bounced back quickly and we managed to go on holiday with Mummy doing the gruelling IV regime. As it stands at the moment we believe Rowan isn’t absorbing any of his medicines anymore either. His pain has increased dramatically recently and a day out to GOSH took 36 hours to recover from. Our first trip to the hospice was fun, but again they commented how uncontrolled his pain was, so they are trying to get us some help with that. It took Rowan 48 hours to feel better after being at the hospice, he really wasn’t too good at all!!

Post helps more at these times than you can imagine, as a distraction and as a reminder that people are thinking about him. The excitement sometimes overrules the pain for those few minutes. Katrina, Cameron and Ayden also thoroughly appreciate their post. They know that although Mummy is often very busy with Rowan, they do have something for themselves, and will take themselves off somewhere quiet to play with their little gifts or read their post.

Thank you to everyone who continues to send post to Rowan. He will be back at GOSH on 15th September for a few days for some more tests. At the moment I hope they find something, that a test comes back abnormal, so that we can help Rowan, in some way at least. There is currently no option for him other than 24 hour TPN. No forward plan as they still can’t work out what’s going on, but he is definitely unfeedable. Despite all this he adapts and faces most days with a smile and determination. Thank you for still posting to Rowan.

Update 9th August 2014

Rowan has been doing ok since the last time we updated. Still struggling with his pain and fatigue but working on getting a good balance for him. We have been concentrating on living life for the last few weeks!

We went to GOSH for the endocrine admission and it all went a bit wrong, and as no one was prepared to risk Rowan’s safety, obviously, we are rebooked for the 14/9 to do things a much safer way. Rowan’s MRI was, on the whole, ‘normal’. There were a few abnormalities but nothing we didn’t know already. So he is booked for a nuclear medicine test.

Rowan had a line infection, Klebsiella, last week. He showed signs of being unwell at 7am, but by 8:15am I was in my local hospital where he was extremely unwell for over 12 hours. However he pulled through and bounced back and we were discharged on twice a day IVs 48 hours later!

We then went on holiday. We went to Camp Bestival and has an absolutely amazing time despite the relentless IVs, but we were determined to go and enjoy ourselves!

Rowan has his first hospice stay next week and we have everything crossed it’s ok. It’s like an assessment to see how many nights we are entitled to as respite. While we are there we are hoping to fit in some of our new hobby, geocaching!!

Thank you so much for the post, especially Karen and Toni, and Kim and Stevie, and Sarah and Fudge the cat, and also the regular cards from Marty Longo.

Update 2nd May 2014

Rowan has recently been back in to Great Ormond Street for 2 weeks to try and get him back onto some milk into his small bowel after the clinical incident last September. Unfortunately this completely failed, but we have not yet given up. Rowan is awaiting various tests and scans to still try and figure out what is going on for him with a view to finding a way forwards, or back to where he used to be. We have, however, had the discussion that Rowan can live purely on TPN and lollies for quite a long time as long as his liver manages ok and so far it seems ok. Rowan will also be going back into GOSH for a week on 12th May to try and determine why he is no longer responding to his endocrine treatment plan, and find a way forward with this too. His pain is also, as always, an issue, but he soldiers on through determined not to let it ruin his life. Sometimes he’s a little too determined and we are still figuring out the pacing!

I wanted to say thank you to those who sent Rowan birthday cards and gifts, he was very pleased! It means so much to him to receive these as none of his (or my) family sent cards, or really acknowledged this huge milestone of turning 5. We went to West Midlands Safari Park for his birthday and he had a fantastic time, as did Cameron with all the animals!

Update 27th December 2013

Rowan just wanted to say a really big thank you to everyone who sends him and his siblings post. We are going through a pretty tough time at the moment and post brings the much needed distractions.

Rowan has been quite poorly. He has needed a course of IV antibiotics for a line infection and has lost an awful lot of weight and all his muscles are wasted and all his tone is awful. He will now need splints and is spending a lot of time in his wheelchair. The physio has said he will need to go back to a walking frame for a while soon as he is struggling so much. So it’s a huge step backwards for him, but we are remaining positive that this is just a blip. However, another GOSH stay may be imminent. We have 4 weeks to turn things around. His pain is difficult to manage and he is tired all the time, very pale and very inactive. He still has that cheeky gorgeous smile and plenty of attitude though.

We had a really nice Christmas at home just the 5 of us. Much excitement over Rowan’s walkie talkies from Santa (the one thing he asked for!).

Thank you so much for all the elf gifts, Christmas gifts and Christmas cards. With no family and very few friends it makes us feel very loved!! There are a few people we wanted to say thank you to. The high school in America who made cards for the children, thank you! The brownies who sent Katrina’s elf parcel! She loves her box of treasures, thank you. Sarah and Fudge thank you (we knew it was you even though there was no name on it). Thank you Glad, for always finding amazing Mickey Mouse items!!

I also wanted to say a really really big thank you to Kim. Thank you for organising the elf project, we had great fun choosing the gifts we sent, as well as receiving some. Like I said, it’s nice to know that there is someone out there who spent time thinking about my children and the difficulties they go through, especially being so isolated. I also wanted to say thank you to Kim for making sure I wasn’t left out this Christmas and I already have some recipes written in my new book. Thank you everyone.

Update 3rd November 2013

The last month has been very eventful for us all, and not in a good way. Rowan went for a routine procedure to check out how his gut was doing and due a clinical error (that is now being investigated) spent a total of 32 days in hospital. Rowan had to have emergency surgery 12 hours after coming back from the planned procedure, to correct a huge error that happened, that has never happened before. He came out of theatre the second time and was very sore physically, but also scarred mentally. He had to have his stomach stitched back to his abdomen wall, and his gastrostomy tract sorting out. He had peritonitis, he then had a reaction to ketamine (he came out of theatre with analgesia) so had to have morphine only. He then grew 2 abscesses in his stomach. He then had an allergic reaction to an antibiotic that took 10 days to get under control. He then needed a blood transfusion. He then spiked temperatures. When we finally got to a point we thought we were winning we tried to give Rowan dioralyte. He was on 24 hour TPN until this point, completely nil by mouth. We gave him 5mls an hour, a teaspoon an hour, of basically sugary water, and the pain was immense, he needed extra pain relief. He didn’t leave his bed for weeks and weeks at a time. Something wasn’t right. So we let him have longer gut rest. We then tried again, 4 weeks after the emergency surgery and got the same response. His gastrostomy drainage output has almost doubled, it has blood in it, he’s still not very well. He had an endoscopy to see if they could see a reason for all the problems and everything seemed to be ok. So they could not find a reason for all his continued pain and feeding problems.

So, after 32 days, we came home. Rowan is still considered ‘unfeedable’. He has gone from a child who eats, has milk, and TPN, to a child who is on 24 hours TPN and has medications Intravenously, which he has not required up until now. At the moment he still doesn’t really show much interest in food, which is extremely concerning. The doctors are hoping that a while longer with gut rest and he will be fine, but they don’t really know to be honest.

Two days before we were due to come home, Ayden, Katrina, and Cameron came to visit us with some family friends. Ayden got hit by a cyclist while crossing a road, was thrown in the air, and smashed his forehead on the kerb. One car journey, immobilisation and ambulance journey on a spinal board later, we were at A&E with a big gash on his forehead that goes right down to the skull. They were unable to ‘fix’ him that night, so I had to take him back to UCLH on Saturday morning for surgery to fix his head. So I had two children, in two hospitals in London. It was certainly a long month!

Now that we are home, we have had half term. It’s been hard adjusting to a new routine, with all the children here all the time. Rowan’s mobility has decreased and he’s is so exhausted so quickly. We have had fun though thanks to a couple of friends, we have made this half term the best so far, from pumpkin carving, to hilarious road trips, to the cinema, and to bowling. All working around Rowan’s new harrowing schedule, but we did it. Rowan is back at GOSH on Friday for another minor procedure, hopefully it really is minor this time!

Thank you to everyone who sent Rowan post while he was in hospital, Dottie, Glad, Kim and Stevie, Louise, Karen, Toni and Connor, Laura J, and everyone else who sent us post, there are too many to mention. You have no idea how much these letters, cards and postcards mean to a bedridden child in pain.Some days the only time he would sit up, was when the post arrived.

Update 7th October 2013

Rowan is doing well, but still isn’t well enough to go home. We have tentatively started feeding him. He is still requiring morphine for pain. We will be here a little while longer yet.

Thank you to those who send post, it really does make him smile. The first time he sat up after his emergency surgery was to open post.

Update 29th September 2013

Just wanted to let you all know what’s been going on with Rowan recently. We came to GOSH for a routine motility test – the same one we tried in May but failed. It failed again, but he just wasn’t right afterwards. It was put down to being sore. We gave him medicine in his tube like always and he screamed. Very strange. Then he tried to sit up and he screamed solidly for 6 hours in agony. While everyone tried to work out what was going on, he was just in so much pain. At 11.30pm, 12 hours after we came back from IR, we finally had doctors and anaesthetists and surgeons and radiographers. While they were still working it out a consultant surgeon came in, took one look at him and said theatre NOW. By 00.15am he was in theatre and at 3.45am he came back with the perforation and displaced gastrostomy resolved. Hooked up to ketamine and morphine, and very very sore. He then had a reaction to the ketamine, couldn’t wee, and has numerous infections.

So that’s where we are now. He is not allowed to eat until next weekend at the earliest. We are just taking it one day at a time, he is not recovering as quick as the teams would like but always at his own pace.

Thank you to Denise and Kim and Glad for both mine and Rowan’s bits. Amongst all this I passed out when we went to get Rowan from theatre the second time due to lack of food and fluids. It’s hard to explain how you can just forget to eat and drink in a crisis, and this combined with a lack of sleep, and high stress/anxiety lead to me having a little lay down on the floor. I am ok now and thanks to Kim, Glad, and Denise, I have food and drink supplies whether I can leave the ward or not. Thank you.

Update 10th September 2013

Rowan’s life has been the same as the last post. We still battle the pain, and now he is carrying his backpack around more often he is getting a pain in his back that he says is ‘burning’. So far we aren’t sure if it’s helping or not but we’ll see, these things are never quick to change for Rowan it’s always slow progress. On top of that he has yet another infection, so more antibiotics for him. He is getting pretty sick of them to be honest, with ‘not ANOTHER one’ when the extra syringe is added to the row of other syringes with medicines, all of which he has little nick names for, and I tell him it’s an antibiotic. But life is how it is for him, and he’s determined not to let it get in the way.

Rowan started school last week. He has had 4 days there and he is LOVING it. It makes him exhausted, his pain has increased, but he is so happy to just get up and go to school each morning with a bit smile on his face. Thank you to those who sent Rowan ‘1st day at school cards’ I didn’t even know they made those!! He was really thrilled! Today he went sailing with his new carer. Rowan has a couple of favourites when it comes to carers, and I am sure the new lady will be a firm favourite! He had an amazing time and looked so happy. I am rather jealous however!

In just 15 days time Rowan will be admitted to GOSH for 3 days. Then he will be home for a week, and then he will be back for 5 days. These are for the tests that failed at our last admission.

Thank you so much to Sarah for Rowan’s underwater dough as that is in the box to take to GOSH, along with the activity book. Thanks to Karen and Toni for Rowan’s stationary for school, we can’t wait to use it to start learning to write. I can’t remember who sent Rowan a pencil shaped pencil tin with mickey pencils inside, but thank you for those too. Thank you to Viks for Rowan’s fab ride-on JCB it’s a firm favourite!! Also thank you to Glad for the top, he really will be a Brighter Spark soon!

Update 17th August 2013

I just wanted to quickly apologise for not updating recently. Illness has gotten in the way. Since the last admission, things haven’t really changed too much. Rowan’s pain has not really improved and he’s now struggling with lower back pain. We checked that his spine is ok, and it is, and we checked that his kidneys are ok as he had nephrocalcinosis before, but that seems to have gone as well. Apparently it is very uncommon in young children to have back pain and they could come up with no reasons or solutions or treatments, so this continues for him.

Rowan is due to go to GOSH again next month to try and redo some of these tests although at the moment it looks like there are problems with his gut which prevent some of these tests being done. As it stands, we have increased some of his medicines to try and help him out; we have changed his formula milk, increased his TPN a bit. We were reducing his TPN to try and wean him off, as that was always the aim, but we got to a point where he was unable to make simple decisions, such as ‘which film do you want watch’ and he became very clingy and upset, and very high maintenance. Since increasing the TPN Rowan is back to his usual self, making choices and making sure we are all aware of them! We tried to get Rowan off his milk feed for longer in the day times, but he is having 3 hours sleep in the day. This is not usual for a 4 year old. So we are going to try and go back to feeds in the day to see if it gives him a bit of an energy boost, and stops him being so exhausted. He also now has a drainage bag attached to his gastrostomy for a bigger chunk of the day to try and easy some of the bloating and stomach pain and it seems to be helping a little bit. We are also still plagued with a multitude of infections that we just don’t seem to be able to clear no matter how many antibiotics we throw at them.

Apart from the extras we have been thrown, the main focus over the last couple of months has been on sorting things out so that Rowan can go to school in September. He is SO excited to be going to big school with Cameron, Katrina and Ayden. He has met his teachers and his helpers and he can’t wait. He will only be going part time, to try and limit the pain a little a bit, and we’ll see from there.

Rowan loves all his post. Thank you so much for making him smile, it really does brighten the children’s day when the ‘post lady’ arrives.

Update 31st May 2013

Rowan just wants to say a really big thank you to everyone who sends him post, especially when he’s not doing so well. Rowan was in GOSH for what was meant to be a battery of tests to help us understand Rowan’s gastro problems better. However this just didn’t happen. When we arrived we did the usual blood tests, swabs etc. I already knew he had infections, and took the swabs over a week before we were due to go to GOSH in the hopes we could get some treatment, however this didn’t happen, and Rowan ended up riddled with infections. Each time he gets an infection it progresses more quickly. So, a lot of the tests were cancelled. Rowan had an EGG (Electrogastrogram) and he had a liquid gastric emptying study. They attempted to do an ADM (Antroduodenal Manometry), but they couldn’t get the probe in, they tried for 2 hours. The radiologist said that his stomach and his bowel just aren’t right. Usually the gut helps to push the probe through but it wouldn’t. They even tried taking his Gastrostomy out and pushing the probe through the hole there and it still wouldn’t go in. It would appear from this that he has gut dysmotility. This is no huge surprise to anyone to be honest. It took two hours of them pushing, pulling, poking, prodding, luckily Rowan was under General Anaesthetic but he is very very sore, and currently not eating properly.

We also saw our new Endocrine doctor, who believes he may be able to give Rowan a partial diagnosis at some point and has a few different ideas as to what may be going with Rowan from an Endocrine point of view. For now Rowan’s care has increased again, his list of medications has rapidly grown. We will probably have to go back to GOSH for the tests to be done. The pain team didn’t have any ideas really, they considered a TENs machine, but decided he was too young, although they did recognise the pain (thanks to the aid of videos) and are hoping to get my local team more on board with his issues. We will have to also go back to GOSH for 2 weeks of Physio rehab at some point too as it’s agreed his mobility is worse and he is even weaker than he was before, despite the physio, so they need to look at him again properly, which will be the 12th June.

Thank you for all Rowan’s post! He LOVES his letters from Blossom (Kim Lawrence), and all the Dottie post. As always, Denise knows just how to make little man smile, and Rowan’s book from Glad kept him entertained for ages in hospital. Receiving the post actually in hospital, made his day. He was SO excited! I hope to update again soon, with more positive news hopefully.

Update 30th March 2013

So, it was November since we last updated! Since then we had Christmas, which was the best Christmas I think we’ve ever had. We went away for Christmas and the children had a fabulous time, and were very very spoilt!

Since then, Rowan has continued to struggle with his pain and fatigue. We have not been able to get him to nursery for any longer than 90 minutes per day and this causes him pain. However, he faces it with a determination, and no matter how much pain he’s in, he wants to go to ‘nerfery’. There has been no progress on this side since November, still no one is investigating his pain, or helping him, or providing us with any better pain relief. It is these times when post really helps Rowan. When the children’s post arrives, they get so excited and are really happy. The children love reading through the post and trying to decipher some of the handwriting.

Rowan went back to GOSH last month for an outpatients appointment and we are trying to wean Rowan off of his TPN. This is difficult being a single parent as he regularly wakes up through the night hungry due to hyperphagia (obsessive eating). He has gained a little bit of weight and a little bit of height and now seems like a good time. Unfortunately this is not as easy as it sounds.  Rowan is on an enteral feed. He is fed directly through tube into his small bowel. He is fed a very special very concentrated prescription formula milk, via a pump and this is now 24/7. In order to wean him from his TPN, we have to increase the feed as we decrease the TPN. This is already causing problems. Rowan is in more pain carrying his backpack around and he has leg pains and back pains. He is also suffering again with bloating and stomach pain/cramps therefore he is needing to have a drainage bag, attached to the tube that is in his tummy (he has two tubes) to try and drain out whatever is causing the bloating. Some days are better than others, some days he’s absolutely fine, other days we flit between screaming and clingy and asleep.

Also, since I last updated the children and I have moved house. It was very exciting but also quite difficult for the children. They now seem to be settling, and have the added bonus of being able to ‘play out’ now that we don’t live on a main road anymore. There are lots of other children who live near us too so they have been making friends. I can’t wait until the summer when I am sure they will be outside all the time. Also, we now have a nice little garden, which will mean that Rowan can also play outside when it’s warmer.

February brought us a letter that I had been awaiting for a long time. The confirmation that Rowan is starting school. He is going to the same school as his big brothers and sister in September. This is such a huge milestone for any child, but especially a child who has struggled and continues to struggle, like Rowan. Luckily for us this means that the 1:1 he already has for nursery, should go with him into reception, so there shouldn’t be too much upheaval. Also, as Ayden is already in reception, Rowan has regularly visited therefore shouldn’t be too difficult to transition. I took Rowan into our local school uniform shop and ordered Rowan’s ‘smaller than usual’ school uniform jumpers. No one is quite sure where to find trousers to fit him, or tshirts, but we’re working on it! At the moment we are not sure how school will pan out for Rowan as he currently doesn’t attend the 15 hours all other 3 year olds who go to nursery do and he is very nearly 4. It’s looking highly unlikely that Rowan will be going to school full time and will start off part time. How we increase that we’re not sure at the moment with the pain being so prevalent, but he is very excited to be a ‘big boy’.

April brings us a very very exciting week. Rowan, Ayden, Cameron, Katrina and I are going on holiday. This is our first ever holiday. We are going with a couple of my family members and the children are extremely excited!! We are off to Devon. It’s all booked and paid for, school have agreed the children can have a week off school, and the car is hired. Two adults, 5 children, and a 5 hour drive to Devon. This is no mean feat with Rowan, but we are determined to make some happy memories.

The children have had a lot of post. Ayden loves receiving his letters from Liam and is writing one back as I type. Katrina loves reading the letters from Laura J. Cameron receives a lot less post than the others, but loves his post from Jacqui. Rowan absolutely loved the card he received from class 1CN! And the Easter Bunny ears and Bubbles that Sarah and Fudge sent went down a treat! All the children are so excited when their post arrives, it really brightens their evening. Thank you to everyone.

Update 26th November 2012

Rowan has received some really lovely postcards this month. Thank you to everyone who has sent him cards, little notes, postcards, little presents, stickers. He appreciates everything.

This month has been really rough on Rowan with pain in his legs. As yet, no one is treating this pain with pain relief, or investigating where it’s coming from. It’s affecting his sleep, and mine. On a positive note, those night nurses are earning their money! Rowan’s still not gaining any height, despite the doses of Growth Hormone, so we now need to try and cut his calories down to prevent him from becoming overweight, as although gaining roughly 100g a month is pretty rubbish, without growing upwards, the extra weight will begin to cause lots of problems. As yet we don’t know why he isn’t growing upwards still. Rowan remains on TPN, but it’s all being tweaked to try and reduce the calories. The problem with this is that the more TPN they take away, the more oral food Rowan eats to compensate. He has an additional label of hyperphagia to go with everything else. With all the additional oral foods, his gastroenterology problems are exacerbated. So we’re back to bloating, stomach pains, constipation as well. It’s very difficult to keep on top of and keep him comfortable!

On a positive note, Rowan is loving going to ‘nerfery’. Although this is still causing problems with pain, as a little 3 and a half year old it’s fantastic. He’s learning his numbers, and recognising them spontaneously and he’s working on putting them in order. He’s just coming on leaps and bounds cognitively. Physically he’s still really behind and the closer he gets to 4, the more noticeable the difference. Rowan is as yet unable to jump, he can’t step up the curb without needing to hold onto something, or someone. He is unable to negotiate uneven flooring still. He struggles to climb up and down things. Despite this, he still manages to cause chaos, with a big cheeky grin on his face! Sending Rowan to nursery was one of the hardest things I have ever had to do, but it’s paid off as he loves it. And, despite the pain, he gets everything he can out of nursery. He can tell you who his friends are and it’s really nice that he’s being able to access the things he deserves. And for that, we are grateful to the school, they would do anything to keep Rowan included. For example, this week, Rowan will attend his first ever DISCO!! He will have someone with him one to one, to keep an eye on him, and that one to one will not be me. He is learning some independence, and that we are not attached at the hip, and I am learning that i can just be Mummy sometimes, like the other Mummies. I don’t have to be there, I can pick him up afterwards and hear all about it, like I do with Ayden, Cameron and Katrina, rather than already knowing, because I was there.

Ayden has been into GOSH as well. It has been confirmed that Ayden has a problem with low blood sugar levels, hypoglycaemia. He is not coping too well with this, as he’s not allowed to go all night without eating. An average 4 year old should be able to fast 18 hours with no real problems. Ayden was struggling after 7 hours and at a dangerous level after 10 hours. Therefore he is now no longer allowed to go all night without eating. I have to wake him up around 10pm for a drink and a snack. This is causing problems with his sleep pattern and he’s back to having a sleep in the day, usually just after he comes home from school! We await a better plan from GOSH as this can not continue for him, or for me. It would also appear that Ayden is not growth hormone deficient as originally suspected. So where the hypoglycaemia comes from we don’t know as yet.

Cameron and Katrina are doing as well as can be expected at the moment. Lots of changes happening at home, and I am doing the best I can to keep things to a minimum, and keep things consistent. We are moving house in the new year and the children are looking forward to being able to choose how they have their new rooms. They have all agreed that they will dedicate a space on the walls in their rooms for all their fantastic post, so when they are feeling a little sad, they can look at the letters, pictures, cards and postcards. This will all happen at the same time Rowan goes back into GOSH for 2 weeks for some more horrendous testing to try and form a better plan, and to try and work out what’s going on, and maybe get a few more diagnosis’. At this point I don’t get my hopes up. Lots of plans are always mentioned and nothing seems to come of them. Communication is often not medical professionals’ forte! So for now, we plod along as best we can, looking forward to Christmas, and a fresh start in 2013!

Thank you to all of those who send messages to me too. I really appreciate them, especially at this difficult time.

Update 17th October 2012

Rowan has now started nursery and is thoroughly enjoying his time there. Although this is an activity that he loves, it comes with it lots of problems. Rowan is having problems with his pain levels and he’s getting every single cough/cold/runny nose possible. He has also had infected feeding tubes for around 4-5 months now. We are on our last option to clear the infection, and it’s still there, and yet no one knows where we go from here, or why he’s constantly got infections. Rowan has also had problems with his blood sugars and his gut. It’s not really working properly and no one is sure why.

Next week, Rowan and Ayden are off to Great Ormond Street again, both for various fasting tests and xrays, to try and maintain a little more stability for them. Whilst Rowan is struggling, he always approaches it with a smile, although more recently he’s been very clingy and cuddly. On a plus side, his weight and growth has remained static all this time, and while that’s a little frustrating because he should be growing (especially as his appetite has increased again) it’s also positive because being ill and struggling with infection hasn’t caused the usual big weight loss.

Rowan will also need to go into Great Ormond Street soon for about 3 weeks for motility testing to find out exactly which bits of his gut aren’t working properly. These tests are not very nice for any child. Also having our family completely separated again will cause problems for all the children.

The children would like to say a huge thank you for all their post, and letters, and monthly projects! Rowan particularly loves the Mickey mouse tshirt that Glad recently send him, and all the children love their post from Natashja. They often receive more postcards, cards and letters, than i receive, and it’s a lot more exciting that’s for sure!! On those days that Rowan really struggles and a letter lands on the doormat for him, it instantly puts a smile on his face. Thank you so much for making my children smile, especially at the moment.

Story written 2010

Lennon was born 12 weeks premature. He was transferred to Chelsea and Westminster when he was 2 days old, for 6 weeks, as he needed an oscillating ventilator. During this time he had respiratory failure, a suspected bleed on the brain and a severe kidney infection which resulted in him only having one functioning kidney. He was transferred back to our local hospital only to suffer respiratory failure again. We were told by our local consultant that Lennon would be ventilator dependant and we waited for a bed at GOS for further tests. On arriving at GOS, Lennon had cardiac surgery and came off the ventilator. We were transferred back to our local and then went home. Lennon then suffered respiratory failure again, and in the 6 days he was at home we resuscitated him 3 times. He was re-admitted and transferred back to intensive care at GOS. This happened again only the next month. Lennon came home when he was 9 months old, with 24 hour oxygen and a gastrostomy, as Lennon has no swallow. We had quite a stable period at home, with lots of outpatient appointments at GOS, (Lennon is under 11 of the teams at GOS), and lots of therapy at home. Lennon is immuno-compromised so we very rarely take him out in busy places.

Just before Lennon’s second birthday, his bowel begun to fail. He became severely constipated, despite all the medication he was taking for it and he begun being sick every time we fed him. Lennon’s stomach could only hold 50 mls of milk in one feed, so we were feeding him every 2 hours. It came to a head on Christmas Eve and Lennon was admitted to our local hospital to give his bowel a rest. He went onto iv fluids and was closely monitored due to his chronic kidney failure. We failed to restart feeds again and were transferred to GOS. After a lot of tests and investigations, Lennon was diagnosed with Intestinal Pseudo obstruction and Eosinophilic enteritis. We went back to our local on TPN and waited for a bed on the Gastro ward. Whilst waiting, Lennon got a line infection, and then RSV, and was transferred to intensive care at Addenbrookes. When he first arrived, we were again told to prepare for the worst. If Lennon deteriorated further, he would not survive. And in true Lennon style, 2 weeks later he surprised everyone and was taken out of ICU. We finally got a bed on the gastro ward at GOS and Lennon was given a gastro-jejunostomy feeding tube and slowly came off TPN and onto a 24 hour jejunal feed with his gastrostomy on free drainage to clear all the green bile and air he was producing. We came home again in April 2009, on oxygen and this time with a 24 hour feed running into his jejunal tube.

Since then, we have been in and out of hospital for procedures and tests as Lennon developed Hypo-glycaemia while he was on TPN and as yet they cannot find the cause for this, so Lennon remains on a 24 hour feed. If Lennon’s health deteriorates in any way then he has to be admitted too. He has had various Genetic tests, most have come back negative and we are still awaiting results from the last test for Schinzel-Geidion syndrome.

Lennon attends outpatient appointments at GOS almost every week. And now goes to nursery at a SLD school, which he loves!

His current diagnoses are Chronic lung disease, Pulmonary hypertension, growth hormone deficient, he has growth hormone injections, Hypo-glycaemia, Intestinal Pseudo obstruction and Eosinophilic enteritis, severely deaf, chronic kidney failure, hypo-tonia, Reflux, E-coli, central apnea, sagittal synostosis, dysphagia, failure to thrive.

Lennon has no communication, he cannot walk, but he has just started to pull himself forward on his tummy! He is such a happy boy and very rarely gets upset. Everyone who meets Lennon instantly likes and remembers him – he is well known for being a happy and endearing boy. He is the apple of his Mummy, Daddy and sister’s eye.

Update 15th April 2013

We would like to move Lennon on from Post Pals as he hasn’t been admitted to hospital for over a year now, and we feel that other children would benefit much more.

It has been a pleasure to have been part of such an amazing charity, and all the post we have had has been greatly received by Lennon and Isla. Thank you and all the best. I will continue to send post to the other Pals too.

Update 23rd April 2012

After a quiet few months, comes a busy few months!

Lennon was admitted to Great Ormond Street in March as his jejunostomy stoma was prolapsing. The surgeon managed to sort it out fairly quickly in theatre so it was a short stay.

Since then, it has begun to prolapse again. The surgeon believes it is due to the muscle behind the stoma wasting away. So he has decided to admit Lennon for major surgery some time in May. He will do a laparotomy and have to revise the small bowel, and then sort out the jejunostomy. We are anticipating a 4-5 weeks stay. Lennon’s Picc line split last week and had to be removed, so the surgeon will also insert a port a cath whilst Lennon is in theatre.

So, with no Picc line we have been able to go swimming which Lennon loved! He is so confident in the water, even after 18 months without being able to swim. And it means we don’t have to be so cautious in the bath and he can splash and get as wet as he wants. And have showers again!

Unfortunately, this all means that we have had to cancel our trip to euro Disney. Both Isla and Lennon are devastated that we can’t go now.

Thank you to everyone that has sent post to us and especially to all those who have brought gifts for Lennon and Isla. Thanks also to Dottie for all the letters she sends, they both look forward to reading what she has been up to!

Update 18th January 2012

I’d like to say a massive THANK YOU!! This is to everyone that sent Christmas post to Lennon and Isla. We had so many gifts that they were allowed to open 1 Post Pals parcel every day on the run up to Christmas Day. We are amazed at the generosity of people. Both Lennon and Isla loved every single present they opened and were both keep busy with all the contents. A special thank you to the Sandwell Academy who sent Lennon and Isla build a bears each and a huge box of presents and cards for them both. Isla thought Santa had come early, she was so excited! Thank you so much everyone.

Also, thank you to everyone who sent post for Lennon’s birthday. He had a really good day. The school allowed me to stay for the day with him which was lovely. We took Lennon and Isla ice skating and to have tea with Santa, which they both loved. We also went on the Santa express train and to see a pantomime.

Lennon has had a good winter so far. Lots of out patients appointments, but no stays! His surgeon has decided that it is now time to perform surgery on Lennon’s undeveloped testicles, but will kindly do it in the same anaesthetic as his next endoscopy, along with a hearing test, and maybe more grommets. Lennon’s renal consultant is now thinking about catheterising him. Lennon has had bad bugs in his bladder for 3 years now, and they are all antibiotic resistant now. His last 2 ultrasounds show that he is not emptying his bladder and there is a lot of debris in his bladder. She is worried about the effect it will have on his one kidney and impaired renal function. We will know more at his next appointment. She also made a very interesting observation about the fact that Lennon’s body has a problem with emptying. His bowel, bladder, mouth, stomach and the back of his ear drum don’t empty properly, so she will look into this.

Lennon also has an emergency appointment with Gastro at the beginning of next month, as he has stopped putting on weight again and his stomach has been bleeding every day since mid December.

Lennon is still whizzing around in his walking frame and when he last went to stay at the hospice, all the staff were so amazed to see how much he had changed since he has been walking – what a little character he has become!

Update 19th November 2011

Lennon is now whizzing around in his new walking frame! Thank you to everyone that helped us to raise the money we needed to buy it. It has already made a huge difference to us all. Lennon is much more interactive now he is upright at home. He is free to go where he wants and it is so lovely to have him following me around! Lennon loves to chase Isla and grab her hair!

Winter is here now and we are trying to keep Lennon out of hospital. So far, so good. His weight has stayed the same for the past 14 weeks and his potassium levels are getting lower every week, but he has remained relatively well.

He is really enjoying school and is now part of the school choir. He can now walk around the school to all his classes. His favourite lesson is Dance and he runs down to the dance studio and then has to be dragged back to nursery afterwards!

We are also waiting for Lennon’s new bed to arrive. He already has a specially made bed, but he has begun to climb up and throw himself over the side head first on to the floor, scaring the life out of me and his dad. We now watch him on a video monitor when he is in bed. The new bed will stop him from being able to climb out and hurt himself.

We are looking forward to Lennon’s birthday, we have booked for him and Isla to go ice skating and have tea with Santa and to hopefully go to the London aquarium as Lennon loves fish and water.

Thank you to everyone that has sent us post and thank you for the Halloween parcels. Both Lennon and Isla had great fun with the parcels from Post Pals and the monthly project parcels. Also, a massive thank you for the balloons, Lennon and Isla were so surprised when they opened their boxes to find balloons flying out of the box!

Update 7th September 2011

Sorry it’s been so long since my last update. Time goes so quick and I have a rubbish memory.

Lennon was admitted for his picc line insertion in February. It took them 3 attempts to get the line in, so they are hoping it lasts! Lennon now has his weekly bloods taken at home which is so much better for him. They have been up and down and we are constantly changing the doses of all his supplements to keep them with in normal ranges for him.

With the weather getting better in April, Lennon’s health began to pick up, he put weight on and his blood sugars stabled out. He was taken off the TPN list for the time being, but they will continue to keep a close eye on him, especially with the weather now getting colder again.

We were given a free holiday, unfortunately Lennon wasn’t able to come. We took Isla and Lennon went to stay at the hospice. She had a great time and was spoilt rotten. Lennon loves staying at hospice, and was also spoilt by all the nurses. We came back to find him covered in paint and cake mixture!

We’ve had a few scares with the Jej tube, but I am now allowed to change them myself at home, which has saved a lot of hospital trips.

Lennon has remained relatively well through the summer. He has had a lot of infections. Strep A seems to be hanging around and becoming hard to shift, like the e-coli. And candida has also been a regular visitor. As always, Lennon takes it all in his stride and doesn’t seem to be too affected by them all.

School have been really pleased with his progress. His communication has improved slightly and he is much more interactive. He has also learnt to walk using a walking frame! This is a major milestone in Lennon’s life. We were always told that Lennon would never be able to walk because of his muscle tone. When he turned 3, it took 3 people to support him enough to stand up. The frame has a hip support, saddle and chest support and it means that Lennon is finally free to go where he wants. Leave a door open and he is through it! It is so nice to see him playing with Isla and her friends. We were able to borrow the schools frame during the holidays, but have had to return it. County are unable to fund a frame for Lennon to have at home, so we are raising the money ourselves. I can’t bear to see him have his new found freedom taken away from him.

Thank you to everyone that sends post. Lennon and Isla both love receiving their post and hearing your news and stories. They have loved all the postcards this summer. And when the party bag from Dottie Dalmatian arrived, we had our own little party with Ziggy, our Dalmatian. Lennon and Isla even made cakes and we played party games.

Post Pals has become a huge part of our lives and I cannot thank them and you enough for making my children smile, even through the tough times.

Update 6th February 2011

We managed to keep Lennon at home over Christmas! It was only his second Christmas at home, and both he and Isla really enjoyed themselves. I’ve never so many cards and presents! It was hard to keep a track of what was being opened, so I am truly sorry if I leave anyone out on my list of thank you’s at the end. We still had to take Lennon to the hospital twice a week for bloods to be taken. His bloods have been up and down, and we have started him back on supplements again to hopefully stop them from dropping.

On New Years day Lennon’s Jej tube blocked again, so we spent a very stressful 10 hours at our local waiting for GOS to decide what they wanted to do about it. Because it was a holiday, there were on skeletal staff, with few free beds. The doctors at our local tried all day to get cannula’s in, they had about 15 attempts with no luck. By late afternoon, Lennon’s blood sugars began to drop. I managed to persuade the surgical SHO at GOS to find him a bed and admit him, on the promise that all we needed was a bed and a tube. And if it came to it, I would change the tube myself! So 6pm that night, we were blue lighted to GOS. Lennon really enjoyed it! The Registrar first tried to unblock the tube. Then removed it and inserted a new one. We left there at 11.30pm.

We managed to get a last minute appointment with the gastro team at GOS. They wanted to see him as he had lost 0.4kg in just 5 days. We explained everything that had been happening over the last few weeks to the registrar. She thinks that Lennon’s gut dysmotility has got a lot worse, and that his small bowel is now refluxing back into his stomach. She says that he needs to be on TPN now. So, the plan is for Lennon to be admitted for a picc line as soon as possible. Then we wait for the home TPN training. We have known since Lennon’s last Gastro admission that it would only be a matter of time before Lennon needed to be on TPN permanently. So we were always prepared for this happening but it doesn’t really make it any easier. The reg agreed that it is a difficult decision to make. We have decided that Lennon deserves quality of life for his last years, over quantity. We want him to be happy and pain free and not to be restricted to his feed pump 24hrs. Also, it is thought that if the pressure is off of Lennon’s bowel, he may learn to walk and want to sit up unaided in his chair. We just want our little boy to have the best years possible. The risks are high – liver failure, line infections. The pro’s far out weigh the cons though.

Ian and I both feel a little defeated that we lost the battle of the bowel. But we keep reminding ourselves – as a family, we have all won the battle. Lennon wasn’t expected to survive 2 days, let alone 4 years. He is a gift that has been sent to us, and we will do all we can for him to enjoy his short life and be as well as he possibly can be.

On to the thank you’s! Thank you to Leona for your amazing reindeer letters. We read one a day on the lead up to Christmas. I was so impressed with them; I have kept them in their envelopes for next Christmas too. Also for the cards you sent to Lennon and Isla. To Mary for the stockings you sent to Lennon and Isla, and the rolling stamps. Kate Dee for Lennon’s elf box, he took so long to open it because he had to play with all the toys before opening the next present! Juno, Sarah G, Curly, Susan, Mike, Amethyst, Breeze and Izzy the dog and anyone else who sent Lennon and Isla Christmas cards. To Adam for last month’s monthly project, we loved the books, especially the family book! To Jenny for all your cards and recipe. Isla and Lennon love to bake on a Saturday afternoon and your fudge is on the list of things to make. Claire for your lovely handmade cards. Dottie Dalmatian, for all your letters and postcards. We love receiving the letters; we all love the photos too. I put them all together to make a book with them as Isla loves reading them over and over again. To Penny for Lennon’s ribbon box, he loves it. It always comes to the hospital with us. I am adding to it every time I go to the fabric stall. Thank you to Brianna and Marissa for the homemade card. Sorry if there is anyone I have missed. There were so many cards and presents over Christmas, it was so hard to keep up with them all.

And lastly a huge thank you to Post Pals. You have made such a difference to all of our lives. It is amazing that just one card can make such a difference to Lennon and Isla’s day. And through you, I have made some lovely friends, who truly understand what it is like to have a poorly child and all the trials and tribulations that come with it.

Update 19th December 2010

Sorry it’s been a while since my last update. Lennon has been in and out of hospital over the last month. We had to keep turning his feed off as he seemed to be in a lot of pain with it running. He was looking very grey and not very responsive, even at school. We knew he was not well.

At the end of November we went to GOS to see Lennon’s renal consultant, dietician and his metabolic doctor. We got the results of all the metabolic tests Lennon had done. They all came back normal. We are of course really pleased that Lennon has none of these awful metabolic conditions, but the big blow is that we will most likely never know the cause or root of all Lennon’s problem. This is extremely upsetting for me. I have spent all of Lennon’s life trying to get to an overall diagnosis – I have become almost obsessed! I feel that it is the least that Lennon deserves after all his been through in his short life. I simply can not accept that there is not a cause for all Lennon’s problems.

We then saw the renal doctor. Lennon was weighed and has lost 1.5kg in the last 3weeks. Lennon now weighs in at a tiny 11kg. Both the dietician and renal doctor put it down to his gut malabsorping.

The following day I rang the Gastro team, and the registrar seemed understandably worried and managed to make us an appointment with Lennon’s consultant. Lennon’s renal consultant then rang me at home to inform me that Lennon’s blood results were not good. His sodium, potassium, phosphate levels were dangerously low and he was alkalotic. Lennon was admitted to our local. They needed to get iv access to give him much needed fluids and to give him the supplements that he so desperately needed. Over the course of the night, the doctors had 13 attempts to canulate Lennon. None of which were successful. Luckily they did manage to get a blood sample, which confirmed what we already knew. Lister had lengthy talks with Renal and Gastro at GOS to decide what to do. It was decided to give Lennon a huge dose of salt – the biggest dose Lennon’s local consultant had ever given to a child. Give him potassium supplement, and replace all his gastric loses ml for ml with iv sodium chloride into his jej tube.

The main decision to be made was that Lennon is under no circumstances to have any kind of central line put in (this would make taking blood and giving fluids much easier). The doctors have all agreed that this could be fatal for Lennon. His gut, bladder and urinary tract are full of infections and bad bugs, that will travel internally straight to the line. Similar to what happened when he last had a hickman line. And that they would not consider TPN at this point. Mainly because he would need a central line for this, and because they are so worried about his gut. They want us to keep using it, no matter how rubbish it is, as they feel it will completely stop working if we give it a rest (unless he continues to loose weight).

Unfortunately I spent my 30th Birthday rushing Lennon to A&E at 2.30am after he drained thick brown bile into his gastric bag and was violently sick. But I did manage to persuade them to discharge Lennon the night before his 4th birthday, on the promise that we brought him back for daily bloods. So luckily he got to spend his birthday at home! He wasn’t very well, but we made the most of it. He loved opening all his presents and blowing out his candles!

Since then, his bloods have improved, and we are now having twice weekly bloods taken. His gastric looses have got worse and are now quite high, and his stools are very mucusy. He can be in a lot of pain when the feed is running and his blood sugars are all over the place. Endocrine have changed and tinkered with his meds again. We had a mad dash to GOS in the week as Lennon’s Jej tube blocked, but it was quickly changed by the stoma nurses and checked with a contrast x-ray.

Lennon managed to get back to school for the Christmas week. He had a great time! He made cakes, a Christmas hat and a candle. He met Santa, and attended his first school Christmas dinner, which he apparently loved, even though he can’t eat!

Yet again, a huge list of thank you’s. I am so sorry if there is anyone who I have forgotten. We receive such a lot of post that it is difficult to keep a track of what Lennon and Isla are opening. All post is extremely gratefully received; both of them love all their post! Thank you to Sarah G for all our letters, Sara and Meggie for all Lennon’s monthly projects, and elf box. We are still slowly working our way through the elf box; he is opening one present a day, after he has his injection. Thanks for the birthday cards from Tina, Ruby, Penny and Jenny. To Sarah, Dominic and Gethin for the card and book. To Catherine, Alicia and Nico for the card and pencil. Thank you for all Isla’ Reindeer letters, she has really enjoyed them! To Dottie for all her letters, they really cheer us all up; we love the photos of her out and about! Thanks for Isla’a elf boxes from both the Jackson family and Jill. They have been a godsend when we have been back and forth to the hospital with Lennon. Thank you so much. To Tez for the pop up book and card. To Janet for the toothbrush and fish mobile – the mobile is hanging in Lennon’s room. And thanks for all the Christmas cards we have received, Helen T, Cindy, and the Homberg family in America. Thank you to everyone who takes the time to read Lennon’s updates, it really does mean a lot to us to know that people care about him.

Update 27th October 2010

The past month or so has flown by. Lennon was discharged from GOS at the end of September. The Parental Nutrition worked wonders and Lennon became a different child when it started, I’ve never seen him have so much energy! It seemed to be just what his bowel needed and after a week it was turned off. The day after they turned it off, Lennon was back up to full feeds and the surgeon decided it was best for Lennon to be at home away from all the germs in hospital, before he caught something. Lennon has a habit of going into hospital, catching things, and ending up sicker!

So we went home with a picc line (in case we couldn’t replace all the gastric loses), and a gastrostomy tube and jejunostomy tube, both of which unsecure, much to my horror. We had a few scary moments when the gastrostomy tube slipped out, but thankfully managed to get it back in. And 6 weeks post op they put a button in. So now we just have an unsecure Jej tube for the next 4 months with a 22 hour feed running through it and Lennon rolling all over the place!

A week after we were home, we were coping with replacing the gastric losses so they pulled the picc line out. Unfortunately Lennon developed a rather large lump on the site of his jejunostomy tube, which has meant we have been back and forth to GOS more or less every week for them to check it. It was first thought to be an abscess, then a hernia, and now the surgeon thinks it is a collection of granulation around the tube on the inside. Poor Lennon is finding it very uncomfortable and it is still growing. They won’t do anything about it until they can change the tube – another 4 months.

Lennon managed to get back to school, which he was ecstatic about! He now has an intervener working with him all day, and gets to spend the lunch hour in the sensory room. We have noticed a big difference in him already; he is much more responsive and sociable.

Endocrine have changed all his medications and his blood sugars have been very stable. We are also waiting for the results of the muscle biopsy they took while Lennon was in theatre. They are testing for Mitochondrial disease, smith lemli opitz and CDG. We will hopefully get the results at the end of November.

Lennon had a weekend stay at the hospice, which he loved. He makes us laugh when we go to pick him up and he doesn’t want to leave!

We have a huge list of thank-you’s! Sara and Meggie for the George toy, Toy Story colouring book and rainbow card. Lennon especially loved the cat wrapping paper! And also for the Halloween gifts, the stars are in Lennon’s sensory cave, and he loves the ghost. Wiggly bags for the bags that they sent which came in handy for keeping the picc line safe. And for the fab drainage bag bags, they are coming in great use and the school loves them. Kate Stone for the lovely card and wiggly bags with Yo Gabba on them, Lennon loves them and has been using them on his gastro tube. Dottie Dalmatian for trusting us with one of her puppies, who the kids have named ‘Zippy’! Kate Dee for the Legoland tickets, we are hopefully going this Sunday. Also for the jewellery you sent Isla, and for Lennon’s windchime and rainmaker. They entertained them both through the long hospital days. Also for the Gulliver’s land tickets – unfortunately Lennon was unwell, he stayed at the hospice, but Isla had a fab time! And for the Halloween goody bags for Lennon and Isla, they both love them! Lennon loves the spider! The frog card from Emma, postcard and lovely letters from Sarah G. Katy and our friends in the village for the handmade card and for Isla’s colouring set. Ads, Hazel and Savana for all the artwork, handmade card and door sign for Lennon’s room. Emma and John for the card. Steve, Emma, Ben and Harry for the card. Gemma, Darryl, Rhys and Darcy for the card and lovely drawing. And a huge thanks to Gemma, Phoebe and Finlay for the lovely gifts you sent the kids. Lennon loves the bag, I have filled it with all his medical stuff, so it goes everywhere with him. And Isla is slowly learning to play snap with the cards and has demolished the chocolate! Sarah, Benjamin, Oliver and Matthew for the playdoh, Juna for the duck card you sent Isla, she loved it! Donna for the bracelets you made, they are fab, Abby for the cd you made Isla, she loves it and for the lovely letter you wrote, Teresa for the pop up book, Lennon loves it, and Susan Sweeney for the Peppa pig dvd, pink duck and card for Isla, and the george pig and buzz card for Lennon. The dvd has been earmarked for our car trip to GOS this week. And thank you Dominic for the fab light show you brought for Lennon, it is in his bedroom and he loves it!

Post Pals has made such a difference to us all, especially when Lennon was in hospital. It is so nice to know that there are people who are caring enough to send us a smile 🙂

Update 6th September 2010

Lennon went down to theatre on Thursday afternoon. He was down there for 3 hours. I went down to get him when he had woken up and was surprised at how chilled out he was! Every other time he has been to theatre he has come back screaming and uncontrollable. He had a Laparotomy to get to his stomach to cut the old tube out and part of his stomach, a new gastrostomy, and a jejunostomy. He had a morphine infusion running – which problem explains why he was so calm!

Lennon had a really bad night after surgery. He was in a lot of pain and having a lot of bolus’ of extra morphine on top of what was already being infused. His gastrostomy was on free drainage and draining out a lot of dark green bile – any of my gastro friends will know that this means the bowel has more or less packed up.

Friday morning, Lennon sounds really chesty and hasn’t been to the toilet all night. Chest sounds crackly and everyone panics. He is sent down for a chest x-ray, which shows cloudy bases, and the physio comes to give him chest physio, to good effect. He then spikes a temp of 39.3, so it is assumed he may have a chest infection so they change his antibiotics. Then the doctors decide to start some milk in the jejunostomy, running at 56mls/hour. A silly idea after the day he had! Lennon’s bowel agreed this was a bad idea, and after 3 hours the milk appears in the bile bag, so they stopped the milk. Now that the bowel has been stimulated by milk, the bile starts pouring out. Lennon’s stomach becomes distended and hard and he is so much pain.

During Saturday night he spiked a temperature again of 39.1, but it came down quite quickly, so the nurses put it down to pain.

So, Lennon’s bowel has been left alone for the weekend in the hope that a few days rest is all it needs – after all, he has just had major surgery on what was already a very slow bowel. And Lennon always needs a little extra time to recover from anything.

The pain relief team came round to see him and have agreed to see him on their ward round tomorrow morning. They had some ideas of him having stronger pain relief at home, which will hopefully help him sleep and stop him from self harming.

He has been draining a lot of air and bile today, but the bile is lighter in colour and not so thick, which hopefully means it is slowly starting to work. Lennon has been really fed up and in a lot of pain. He is still having bolus’ of morphine. He is very unsettled and not looking too well at all. Although was pleased to see his uncle, dad and sister today. He has a HUGE bruise on his head where he has been punching himself.

Thank you to everyone who has sent us post in the last few weeks. A massive thank you to Kate, who sent Lennon a bag FULL of Disney stuff, we really can’t thank you enough, we were all so excited empting the parcel!!! Lennon and Isla have both been watching the dvd’s and playing with the toys. Thank you to Alex for the card, ribbon, smellies and mirror. The ribbon is hanging from his bedside light and he loves the smellies! I have a few more parcels to take back to the hospital with me tomorrow too.

Update 24th August 2010

Just to let you know that Lennon is back in hospital waiting to be transferred to GOS. He received post this morning which really cheered him up, thank you to Jane for the postcard and pictures, to Wendy for the handmade cards, and to Sheelagh for the football doorbell which we have been playing with all morning! Thank you all for making my little soldier smile!

Story written 2010

Dominic has had a tough life right from the start. He suffered from severe reflux which could not be controlled by medication and led to his refusal to eat. Eventually he was so dangerously underweight that they started tube feeds. He also suffered from aspiration pneumonia which has threatened his life on many occasions and led to him being ventilated, septic and with acute respiratory distress syndrome. He was given a very slim chance of surviving it and it was a traumatic time for everyone, including his brother and sister, who had to come and say their goodbyes. Thankfully he proved them all wrong and left intensive care only to spend the next 5 months in hospital recovering.

By the age of 2 Dominic had spent most of his life in hospital. He was nil by mouth due to an unsafe swallow and fed by a tube. He could barely sit, let alone run round like peers, and had severe muscle weakness. He was so used to spending his life in a tiny room with only me for company until someone came into his room to do something horrible to him that he became terrified of everyone. Even when we eventually came home he spent most of his time crying, and if anyone approached him smiling, he would automatically assume they were going to cause him pain, as that is just what the doctors and nurses used to do before they hurt him.

His gross motor skills were like that of a 6 month old and he wouldn’t utter a sound except to cry. Though he had started using Makaton sign language with me. Two muscle biopsies showed nothing conclusive but an EMG showed myopathy, so he was given the loose diagnosis of congenital myopathy.

Dominic got used to life at home, albeit still with huge anxieties when not with me or his siblings. Unfortunately any progress was lost last year when a portion of his bowel kinked which ended up with another long stay in hospital, a lot of pain and a huge operation to recover from.

Since his discharge our focus has been on trying to undo some of the damage that his condition and hospital has done to his confidence. With as much love and laughter as possible, I’ve slowly managed to pull this scared little boy out of his shell and to everyone’s amazement he started to talk, and laugh and play. Six months later I have a little boy with a wicked since of humour, despite the constant stomach pains, the dependence he has on me for all his care, and the medical regime that he endures to try and keep him at home.

He still gets very anxious outside our home but I hope he’s slowly learning that the world isn’t such a scary place.

Update 19th January 2015

After a lot of deliberating I think it’s time to let another family benefit from Post Pals. The children are that bit older and Dominic spends less time in hospital than he used to and Post Pals used to make such a difference to all the children that I want another family to experience it too. I never want the children to get the the point where they take other people’s kindness and generosity for granted. All of our regular writers are like old friends that we talk about as though we know them and we will be very sad to say goodbye, but happy that another family can find out the true kindness of strangers.

I cannot thank everyone that has ever written to us or sent us things enough. You are doing such a special thing and it has made a hugely positive difference to our lives at some of our darkest moments. I owe so much to Viks and all the amazing team that make Post Pals such a success. I feel so very sad saying goodbye, but know how lucky I am that it’s for all the right reasons. I wish you all happiness and health and thank you once again for making my children smile when there seemed to be so little for them to smile about.

Update 29th August 2014

In so many ways Dominic is doing wonderfully, so it is such a shame that the abdominal pain has come back with a vengeance and it now dominates a large part of his life. We know that he has a recurring abscess that keeps forming on an old operation scar, but aren’t sure why, and in the last month he has been in almost constant pain. He still manages to smile however, and we’re doing our best to just keep marching on with life. Getting away this summer was not without incident, but we managed it, which was just what we needed after what has been a pretty horrendous year so far. None of us were sad to leave our building site of a house behind (it’s been a building site for nearly 2 years thanks to cowboy builders doing the disabled adaptations).

In other news Elliot is moving on to Secondary school, and would like to thank everyone for all their lovely post, but he feels that he is taking away from younger children who need it more. However he would still be delighted to receive any books that anyone has read and thinks he would like (he reads well above his age), or science magazines etc that people that have finished with. He has a lot of challenges ahead which we are mindful of. In the last year we have found out so much about him that explains a lot of his difficulties over the past few years. Elliot has now been diagnosed with Asperger’s, ADHD, dyspraxia, chronic tic disorder and an underlying neuromuscular condition. I am immensely lucky that he is such a bright, sweet and caring boy though, and has made us all so immensely proud with how remarkably well he has coped with this complicated, confusing world that so many of us without any additional extras often struggle to interpret.

Lilia is still my unassuming flower in the middle of the two complicated boys. As always she is loving, affectionate and cheerful despite it all, but might need some extra big smiles through the post when Dominic goes back into hospital in the second week of September. She misses her mummy the most and finds it extraordinarily difficult.

As always thank you to everyone who sends post. We are shamefully bad at being able to reply to people individually, but please don’t think it’s because we’re not grateful. Once we know what ward Dominic is being admitted to we will let Post Pals know. The post arriving in hospital is his highlight of the day, and the joy it brings is infectious.

Update 1st May 2014

With the exception of a reoccurring abscess and continuing abdominal pain, Dominic has had a good run of health recently. This has meant that he can go to school regularly and has started settling back down again after his recent run of admissions.

Elliot has had a more difficult time. I can’t remember if I mentioned that he has had an Asperger’s diagnosis. That along with his age can be a very difficult combination. As always, Lilia puts up with being in the middle of them both with (relative) good humour.

Thank you for the letters this month and a special thank you to our regular writers. We love hearing from you all.

Update 28th January 2014

We had a really rubbish end of year with Dominic. Lots of things started going wrong and it seemed that with every week that he was in hospital we got another piece of bad news. It didn’t help that new teams started getting involved who lacked the courtesy to consult me before making decisions or actually talk to Dominic. I made the decision before Christmas that staying in hospital was no longer in his best interests and we left.

It meant that we got to spend Christmas at home and even though it was a bit of a blur it was so, so nice to be all together. Nothing could have prepared us for the amazing cards and presents that arrived throughout December for all the children though. We saved the Christmas presents and the children opened them on Christmas morning to squeals of delight. The cards stretched around the room as well.

It was obviously quite a stressful time coming home from hospital after another long stretch, and the cards, letters and parcels arriving from all over the world forced me to stop feeling sad and brought us warmth and happiness from so many different people. Thank you so much to everyone who took the time to write and send some Christmas spirit. Thank you especially to those people who remember Elliot and Lilia.

Unfortunately Dominic is going back into Great Ormond Street on Monday, it’s a prospect neither of us are looking forward to as you can imagine.

Update 12th November 2013

Dominic is now home and not expected to be admitted to the hospital again.

Update 13th November 2013

I am very sad to say that Dominic is still in hospital (Squirrel Ward in Great Ormond Street Hospital). It must be about 9 weeks now. At the moment we seem to be finding problem after problem which means I’m starting to feel a bit panicky. When it was just the large gastric losses that he gets after every surgery I was fine, but now he has problems with his bones and his blood sugar is really unstable. I have to watch him like a hawk and it has completely restricted what I can do as I can’t leave him at all (unless I can get someone to watch him for me). This means that Lilia and Elliot are rarely getting to see me and my home plan is out the window. We’re trying a tiny amount of growth hormone to try and help stabilise the blood sugar and help his bones, but it’s important that we don’t make him grow in the process as his muscle tone is so poor that he is highly likely to get scoliosis. To be able to do that we have to get funding though, and apparently the area that I live is so renowned for turning people down that the hospital won’t start him on it until it has been approved. He is getting less and less stable though, so today I begged. Fingers crossed.

Dominic had a lovely flurry of cards and letters for his birthday which really delighted him and we decorated the whole room with them, so thank you everyone for sending them. He hasn’t really received anything since though and I know would love to hear from you if you have a second. Equally, Lilia and Elliot are probably suffering the most at the moment, having been so amazingly strong I know Lilia now is really feeling down about it all. She smiles and says she’s fine, but sends me messages on her iPod that tell me a whole other story. If you think you can cheer her or Elliot up, I would be eternally grateful. Thanks as always.

Update 28th September 2013

What a roller coaster few months it has been. I had huge ambitions this summer, to finally get the children on a plane. They had been begging for the last few years and I just didn’t think the stress of going through security and taking all the medical equipment would be worth it, but having watched a few other families succeed with far more complicated children than mine, I bit the bullet this year and booked to go to Italy. Rather sadly, Italy was chosen as it’s his surgeon’s homeland, so there would be no language barrier if he had to have emergency surgery. As it turns out, a week before we were due to go his surgeon decided on the spot that he needed surgery, as soon as possible. I guess you just don’t notice how bad things have got when you’re dealing with it every day. We did still go away and it was the best decision, not only because Dominic was in so much pain while we were away that both he and I were certain that the surgery was the only option by the time we came back and secondly because a few days after we got back Dominic had another large bowel operation and I have seen very little of my lovely family since.

The operation cut out all the bowel that had previously been fashioned into a feeding tube (roux en-y jejunostomy). It was redone and then a new stoma was made. There were no guarantees that the pain that has haunted him since his 8 month stay in 2010-2011 would be cured by this, so everyone’s fingers were just crossed. This stay did not start well at all, the epidural failed so Dominic woke up in absolute agony and it took them hours to control the pain (every time they gave him morphine his breathing would slow right down so they would stop and then he would be in agony). On top of this, they forgot to put a catheter in while he was asleep. They then tried while he was awake with a tube that was too big. There was lots of blood and I have never seen Dominic so scared in my life and he was screaming in agony. I thought he would be traumatised for life, but a week or so later, now everything has healed, he has relaxed a little bit.

The surgery, in itself, went very well. The recovery is… well… slow. Dominic has his stomach on free drainage all the time, and at the moment they are managing to feed him 900mls into his bowel and he is losing over 800mls out of his stomach. I guess we shouldn’t be surprised that last night I got the disappointing news that the feed was going to be turned right down again as he’s obviously not ready. Frustratingly they have isolated him as well based on stool samples taken in 2011, so we are stuck in the room, and now he is going back on three machines again, we can’t even leave the room to go for a walk outside. I hope we are out of here soon, or I might just go mad.

So we will spend Dominic’s birthday trapped in his room in hospital. I have done everything to try and make it as special as possible, but it just isn’t the same. He has convinced the doctors and nurses to sing him happy birthday though, so come Monday we’ll find out how good they are at singing!

Elliot and Lilia are coping ok. Elliot’s behaviour has been very difficult recently, but with me not there, there is not much anyone can do but firefight until the present situation is resolved.

And finally to finish on a positive note, so far the surgery seems to have worked, there has been none of the awful pain he was having since. Long may it continue!

Thank you for all the post, I’m trying to post pictures on FB as often as possible to show people what a huge difference it make.

Update 5th June 2013

Dominic has been very up and down. There have been huge positives, like seeing how happy he was when his power wheelchair had the speed turned up, but worrying developments too. It seems like he is unhappy, really unhappy at school. Now I wouldn’t believe it for a second if I based it only on the smiling face I see whenever I’m in, but the tears, not wanting to go, not talking about any children in his class and some of the things he’s been saying (like people only like him because he’s in a wheelchair) have got me worried. Everyone wants to do the very best for him, but none of us feel equipped to know where to start.

And on the flip side of the coin Elliot has thrown us a curved ball. He was referred to Great Ormond Street by our local psychologist who thought he might have Tourettes syndrome. He ticks, but not really badly, but it was his behaviour that triggered her concern. The specialist Tourettes clinic think he has Aspergers however. Having just watched the latest Star Trek film which has a scene where spock is being over literal in his responses and proves so frustrating he is told to leave the room, both Roger and I turned to each other and said “Elliot”, because it was an exact replay of the sort of scene that would happen at home. I’ll write more about it on the blog, but for the time being we’re just waiting for the autism department to see him.

Thankfully Lilia seems alright… bit moody, but generally still her same happy self.

Thank goodness for Post Pals… keeps us sane! We’ve had some especially lovely letters, and thank you so, so much to the people who have written such kind things to me after reading the blog. I treasure them all. The children are sent some wonderful things too, in fact Lilia is taking a beautiful nature book she received into school tomorrow, she’s bookmarked all the pages she wants to show her class. And Bertie, your letter is sat right next to me. I feel honoured that your first ever letter was written to Dominic, he’s not very keen on writing, so it has sat waiting for me to find a minute to reply on his behalf. Apologies that it is taking me so long.

Update 1st April 2013

Life seems to have gone from hectic to just stupidly busy at the moment, but in a good way. Dominic is managing to go to school most days and is doing well. I’ve noticed a big change in him since he’s transitioned over to a power chair during his school day. He sits much better (as it’s a fully supportive seat) and doesn’t use up nearly as much energy. He’s a master at moving it, and the first time he came over to me when I arrived to pick him up I nearly cried. Most kids run up to their parents and the parents think nothing of it, but normally Dominic just stays put, so it was a very special moment.

Unfortunately the power chair is stuck at school as the house stiiiiiiilllllllllll hasn’t been adapted. Five years worth of bureaucracy and I’m utterly, completely fed up. It really hits home how restrictive it is when you see him moving around independently. He should have that at home as well. I have been told that all the paperwork bits are pretty much done now, but I’m not holding my breath. The other issue is the car. I drive a big car anyway to fit his manual chair in, but I would need a van to get the power chair in. Vans cost a ridiculous amount of money, so for the time being, the chair is staying in school and I’ll continue to lift him everywhere else!

Health wise he is doing ok, this coming month my focus is going to be on Elliot who is going up to GOSH for a lot of testing. I’m not sure how quickly I’ll hear anything or even if it will change anything, but it could well explain a few things. Sorry to be so mysterious!

Thanks, as always, for the amazing letters and cards and gifts that keep arriving. The kids have been making a concerted effort to write back, so I hope a few of you have received something. Apologies if you haven’t, it doesn’t mean that we are any less grateful. Just a little mention for a lovely 7 year old boy called Sam… Sam, your letter was passed around to everyone. We all adored it, probably because it was so wonderfully honest about what really matters when you’re 7. Dominic, although only 6 (and a half) totally agreed with your sentiments about brothers.

Update 29th January 2013

The last few months have been pretty tough for Dominic, although thankfully I’m starting to get used to the way that the abdominal pains affect him and have resigned myself to the fact that when things are really bad, the very best thing for him is to have as much pain relief as is safe and to rest and sleep. He had his MRI, and because of the unusual area of bowel that they saw when they reviewed the pictures he then went for an ultrasound. The significance of the ultrasound, it seems, was that the unusual area was no longer there. As always with Dominic there are no absolutes, so when we went to see the surgeons we were presented with two options, major surgery or doing nothing. I chose doing nothing as there are no guarantees that the surgery will prevent the same happening again down the line, and it seems like too much of a risk. I have been plagued since that appointment with both sadness and guilt, especially when the pain is bad, that I have chosen this for him. Thankfully Dominic is far wiser than I am, and sees the pain as a mere inconvenience in his otherwise happy life.

The post that we have received has, undoubtedly, been the highlight of the children’s day. We have been making an effort to reply to people, but do forgive us if we don’t always manage it. I was delighted to be able to track down one of the people who sent us things on twitter so we could say thank you, she (Kay) in turn told me about her penguin amnesty for Post Pals https://brinkofbedlam.co.uk/2012/06/12/im-having-a-penguin-amnesty/ and I have to say I was moved beyond words that people would make such an effort for children that they had never met. So thank you, once again, for reminding me that no matter how terrible things can seem, there are always smiles to be found.

Update 5th November 2012

Things have been hectic in our house recently. This time of year we celebrate not one, not two, but three birthdays, so I am now the proud mother of a 6 year old, an 8 year old and a 10 year old, eek! Dominic wasn’t really well enough to do much on his actual birthday (see my blog for a photo-video of some of the surprises he did get) but he did manage to go to the cinema to see Madagascar 3 with a friend from school as a ‘party’ of sorts a full month after his actual birthday. He is of course now mad on Madagascar as he enjoyed the film so much. Lilia had her party on Halloween, so the house was filled with little witches and I took them all trick or treating, which was wet, but good fun. A big thumbs up for all the Halloween project bits we received which took pride of place at Lilia’s party. Dominic joined in too (dressed as a vampire, so not too much make up was required as he is generally ghostly white anyway) and loved asking ‘trick or treat?’ even though he’s not currently allowed to taste any food at all. Elliot sensibly escaped to a boys party for the night.

Dominic has had a short respite from the horrible abdominal pains he’s been having, although, unfortunately they have recently returned. He’ll be having an MRI of his abdomen next week, and although I don’t think anyone is expecting to find the cause that easily, this is Dominic after all! He’ll have to be extraordinarily brave as they are going to do it awake with no sedative (it’s the safest option for him) and it’s going to be a long procedure (over an hour without being able to move even a tiny bit). Can’t say I’m looking forward to that appointment!

He also has lots of other appointments coming up, and hopefully I’ll get some help finding a way to seat him more comfortably (his bum is so skinny at the moment he’s getting sore just from sitting on the sofa and has to be on memory foam at all times) and getting him having tastes of food again.

Thanks, as always, to everyone who takes the time to contact us, especially those who sent birthday cards and presents to the children and made them feel really special. Extra special thanks go to Leona and Kati Koskinen for managing to make everyone feel thought of.

Update 28th September 2012

After having had a really positive first year in school, unfortunately in the months leading up to the summer holidays Dominic noticeably deteriorated. He started having crippling abdominal pain and slowly our lives started becoming dictated by his health again. We had various visits to the surgeons over the months and I tried everything to avoid Dominic having to have yet more abdominal surgery, however as the school year came to an end we were pretty much trapped in the house, as moving Dominic anywhere caused him so much pain. The surgeon and I agreed that holding off was no longer the right thing to do and we cut our holiday short and took him to Great Ormond street for exploratory surgery. They found a big loop of bowel that was stuck to both sides of his abdomen which fit all his symptoms. They took it down and repaired the bowel and everyone was exceedingly hopeful about the future. The gastro team had taken the opportunity to take a look at his large bowel while he was under anaesthetic. Unfortunately they found that it was inflamed and it explained some of the bleeding that he’d had. As a result all the tastes of food that he loved (with an obsession that would put any food lover to shame) have had to stop. Dominic obsessed about the times in the day that he was allowed to lick a lolly and this is a hugely upsetting thing to happen. He has been amazing about it though, only crying once at the thought of people eating his birthday cake when he couldn’t even taste it.

He remains philosophical about it all with wisdom well beyond his (almost 6) years and I’m in awe of his coping skills. Unfortunately, it’s not just the not eating that he’s currently coping with…

It very quickly became apparent that there was still something wrong a few days after the surgery. He started looking very unwell and screaming in pain. A week or so later with no one knowing what to do and no sign of improvement, I made the decision to bring him home, hoping that time and the distraction of family life would help. As things stand he is spending a lot of his life on the sofa, under a blanket. His pain is intermittent and helped a lot by the strong painkillers he came home with. I’m trying to get him into school as often as possible and home schooling him when he’s just not well enough. Both of us are exhausted as he is generally very unsettled during the night, but he is undoubtedly better in his own house rather than living on a ward for months while they try and figure out what to do next.

We are currently waiting for an MRI to give the doctors more of a clue about what is going on and trying to focus on his birthday on Sunday. We’re not sure yet if he’ll manage to do anything for his birthday as he might not be up to it, but it will be an Avengers themed day, and we’ll try our best to bring the party to him if he can’t go out anywhere.

All the post that we have received has undoubtedly carried us through the difficult last few months. Lilia has produced some beautiful pictures and crafts thanks to some of the lovely activities that have been sent, Elliot has done some gross magic tricks for us thanks to a gift and Dominic has been delighted by the fabulous postcards and gifts that arrive. Elliot and Lilia appreciate the letters addressed to them so much, even if they don’t always manage to write back, the anticipation and delight when the post comes lifts the mood for the rest of the day.

It’s a busy birthday month coming up with Dominic’s birthday at the end of September and Elliot’s and then Lilia’s in October. I’ll do everything I can to try and make sure their birthdays and (hopefully) birthday parties are unaffected by current circumstances. Thank you in advance to everyone who takes the time to send birthday cards.

Just as a little aside, with Halloween coming up especially, please, please don’t send Dominic any food related things, he’s being so brave about it, I’d hate to see him disappointed however wonderful the intention. Also Elliot and Lilia are both vegetarian and so all sweets with gelatine in they can’t eat (for example chewy sweets like Haribo anything with marshmallows in it etc). Lilia wants to have her party on Halloween, so this year we’re trying to make it extra fun. She is going to be a gothic bride, Elliot is going to be a ghostly escaped convict and with Dominic I thought we’d put his deathly pallor to good use and dress him up as a vampire.

Once life gives me a chance I hope to go back to updating my blog regularly, so if you enjoy following what we’re up to come and say hello, I love hearing from post pals friends.

Thank you once again from all of us, to all of you wonderful people out there.

Update 8th April 2012

Thank goodness for school holidays! All the children have been exhausted so the Easter break has been much anticipated, although we’re all disappointed that the weather didn’t hold out. For the first time, and only thanks to a friend of mine, I have managed to find an Easter activity that Dominic can join in too. He and Elliot and Lilia joined an inclusive theatre group for the morning which was fabulous (even if I had to stay to do all of Dominic’s medical care).

Talking of medical care, Dominic has been back in hospital briefly for testing, although after being starved and stabbed they didn’t have enough nurses to complete the test (he would have had to have a one to one nurse to be safe while they were completing it), so we’ll be going back in again next month which is a pain. Other than that we have a very important appointment coming up where we’ll be finding out some important test results. I post regularly on my blog with pictures and videos of the children so do stop by and say hello.

We have been getting some fabulous letters and the children (even my writing phobic oldest) have been replying to a few of them when they are able. Thank you as always for taking the time to make them smile.

Update 27th March 2012

It has been a while since I updated the actual Post Pals site rather than just the blog, for which I apologise.

All the children are doing well in their own ways. There have been a lot of appointments for all three of them, and I hope you’ll forgive my reticence in going into any more details for now until we actually know what is going on.

Dominic has amazed everyone with how well he is doing in school, and has caught up with his peers with everything except writing which is still difficult for him because of the weakness in his hands. He even managed to complete the sport relief mile with his class in his power chair. It took him a long time, but his class cheered him round which was testament to how accepted he is.

He’s been unwell recently and is going into Great Ormond Street briefly again in a couple of days. Life is undeniably exhausting for him, but he copes amazingly. I’m trying to give Elliot and Lilia as normal a life as possible, but trying to juggle everything is interesting to say the least. We are still waiting for the house adaptations to go ahead (goodness knows how many years it’s been now), but we are at least at the point of having a builder picked out. At the moment Dominic is pretty much stuck in one room unless I carry him, so both he, and my poor shoulder, are hoping that it might happen this year (although I was promised it would be finished by last Christmas at the very latest, so I’m not holding my breath).

We still haven’t managed to sort out any suitable supportive chair for the long days at school, and so the general consensus is that he should be in a power chair rather than a manual wheelchair at school. This seems like a huge backwards step and it’s taking me a long time to come to terms with it, but everyone is worried about his spine so I guess it’s unavoidable.

That’s it for now. Sorry about the patchy and slightly vague update, I will post fully when I know, and have come to terms with, whatever is going on with all three of them.

Thanks for the lovely letters and gifts that continue to arrive for the children. I hope you have been catching my thank yous on Post Pals Facebook page, which is where I generally post them.

Update 2nd November 2011

Huge thanks to everyone who has continued to send post despite my prolonged silence. The lack of communication has, in some ways, been for wonderful reasons. This summer is the first one that Dominic and I have managed to not be in hospital, so we made good use of it and went away with everyone first to a children’s music festival, and then to France for a week. Our trip to France was more wonderful than I could have imagined and I think of it very fondly. I couldn’t get any reception on my phone when I was there, which meant no one was hassling us and we actually got to be a family, just us, enjoying each other’s company.

It was fabulous for all the children of course, such a novelty doing things that regular families do. It took a ridiculous amount of planning and packing, but it was so worth it, and gave Dominic, especially, a real sense of family and security before he embarked on a huge milestone for all of us… starting school! He’s at the same school as Elliot and Lilia who are so proud to be seen with him in the playground. At the moment he’s a bit of a celebrity and is causing disruption every assembly when everyone wants to say goodbye to him when they’re meant to be lined up quietly, but I’m sure he’ll become a regular school boy soon enough. At first he found it very difficult to cope with the attention, but thanks to the weeks and weeks of preparation before school broke up for the summer, he seems to have settled in far better than anyone thought possible and, despite his protests otherwise, is actually really enjoying himself. He’s really, really exhausted by the end of the week which causes a few blips in his ability to cope with things, but, with the exception of hospital visits and illness, he is managing full days 5 days a week, which is testament to what a superstar he is. I recently started leaving him with his one-to-ones at the school, which again he, and they, are coping with very well.

I of course miss him like crazy, but I’m so busy that the day flies and I haven’t even made a dent in the towering pile of papers that have been put on hold for so long. In many ways things have been wonderful and the children have been more settled and happy than they have been for a long time.

Health wise Dominic has been relatively stable. I can do most things that he needs at home, so we have avoided hospital as far as possible. He has been having some pains in his legs which have been difficult to cope with as we have no idea what is causing it, and his same stomach problems persist, made worse by the school bugs that are of course flying around.

However, there have been a few reasons for my prolonged absence, so forgive me if I fall silent again, I don’t intend to, but sometimes hiding away is just the only way to stay sane.

Also, and this is rather harder to talk about as I’m still trying to work out what it means for us as a family, Lilia has been diagnosed with the same condition as Dominic… whatever that condition is. It obviously means that we have no idea of the implications at the moment; we just know that she has the same problems as he does with his muscles, they are just milder. They are currently getting Elliot referred to the same neuromuscular team. This could be devastating or relatively insignificant, no one really knows, but it does make the lack of a diagnosis slightly harder to bear.

Thank you to everyone who continues to write, especially Leona who writes regularly to Lilia and is much talked about and loved within our family despite our never having met. The arrival of the letters is such an anticipated event, and brings so much happiness. I know Elliot would appreciate some post of his own if anyone knows any good jokes, interesting (but appropriate) websites or fascinating facts. We keep every letter, and really appreciate all the thought and work that goes into them. There are some amazingly talented card makers out there! Thank you all for still thinking of us.

Update 29th June 2011

Dominic, in many ways, has amazed us all. He’s been going to Nursery pretty regularly and is learning to trust the staff. Trusting adults is a difficult one for Dominic still, he’s had the rug pulled a few times when people come into his life, then, for reasons only known to them, decide to remove themselves from it. It chips away at any feeling of security that we’ve gained since his discharge, and has a knock on effect on his pica which is so dangerous I have to be so, so careful not to leave him unsupervised.

He missed all of the other Nursery rites of passage such as the Nativity play, so I’m going to do everything that I can to make sure he makes it to the sports day. Having a slightly funky body doesn’t stop him being just as competitive as the other children, so I hope his one to one wears her running shoes as he wants the wheelchair crossing the line first. At least it will be the waggling happy feet that actually cross the line before anything, which is as good as running feet really.

Medically he’s been about as stable as I can manage. I’ve only had a few heart stopping moments this month, so it counts as a good month in our household. The hotter weather is starting to take its toll though and I’m going to have to watch him very carefully. Energy wise he’s really struggling. Nursery is hard work and he has very little left at the end of the day, and I don’t think the heat will help that much.

We have had yet more diagnoses added recently, with problems with his hips and bones being identified. I’ll find out more about that at the end of the month when we see the orthopaedic surgeon (yet another consultant added to our long list) for the first time.

We’re also going to Oxford to see the Congenital Myasthenia experts. We know that there is something wrong with Dominic’s neuromuscular junction (the bit between the nerves and the muscles) but he doesn’t fit the classic myasthenic types, so the team are going to give him the once over to see if they are willing to give him a CMS diagnosis, but with an unknown gene fault. It’s a very new and emerging field so I’m really interested to hear what they have to say.

Elliot is doing fantastically. His teacher said he’s been like a completely different child since I got home, he concentrating more, finishing his work and excelling in all his tests. Most notably they score the children’s views of themselves and their own abilities in the school as part of their assessment process. When I was in hospital with Dominic he pretty much said he was rubbish at everything. He gave the answers of a very unhappy child with very low self esteem, and this child top set for everything. He was recently reassessed, and finally talked about himself in a more positive light, even identifying strengths that he saw in himself. I’ve never been prouder.

Lilia is still her happy go lucky self, although a really defiant streak seems to have reared its head since I’ve been in hospital. I guess it’s that defiance that has been what has brought her through it all so well adjusted though, and with an emotional intelligence that belies her young age. She is having some worrying issues of her own that have prompted me to see medical advice. Lilia will be seen by Dominic’s neuromuscular consultant to properly investigate, so watch this space.

And to finish on a really positive note, we finally got planning permission to adapt the house so Dominic can have a downstairs bedroom and access the rest of the downstairs. At the moment he is unable to use the wheelchair in the house so he is confined to wherever he is put down, which must be hugely frustrating for him. He’s very patient with me when I say ‘in a minute’ for the hundredth time though. It’s been years and years of fighting to get to this point, so I’m happy, to the point of tearfulness, that the fight is almost over.

And to all our Post Pals family, thank you. You are part of our every day conversations, our regular writers are like welcoming old friends into our house to share little snippets of their lives or just to say hello, and we always love hearing from someone new.

We had the great privilege of meeting some of the people behind the computers at the Post Pals party recently. Lots of thanks and love to you all as well, you help make our lives immeasurably happier.

We received some brilliant letters and cards this month that Dominic had me read out to him, including some from a school in Switzerland. They were very much appreciated, especially the tremendous drawing of batman. The circus themed gifts were such good fun as well, so very generous and very well thought out. The kids had a lot of fun opening them and it’s kept them busy, which I’m thankful for!

Update 15th May 2011

Thank you from Elliot, Lilia and Dominic, for the lovely Easter goodies. They were utterly delighted. And some of the cards that we’ve received recently are amazing, so beautifully made. Thank you all.

Update 6th April 2011

Well March finally brought us what we had stopped believing would ever happen over the 8 long months that we were in hospital… Dominic was discharged and we finally came home.

It is unfortunate though that bed management got in the way of a proper discharge, despite months of begging to ensure that it didn’t happen, and then once we got home and the problems started arising, the lines of communication slammed shut, despite promises that they wouldn’t. So all in all his first few weeks at home have been unnecessarily frustrating, stressful and upsetting. I have somehow managed to keep him well hydrated; thank goodness his body is tolerating the haphazard approach to his medical care that I am having to fit into being a Mummy to three again. He is in a lot of pain though and it makes me so tearfully frustrated that not only was I forced into coming up with a solution to get him home with very little help, we then got caught up in hospital politics which destroyed both Dominic’s and my trust in anyone and have left us pretty much alone as the community team won’t do anything without the specialists say-so.

Thank goodness the community nurses are doing everything within their power to help and so I get the blood and urine results the day that they are taken and then attempt to get someone to listen if there seems to be a problem. At least it’s a good guess that people are reading the emails I’ve sent even if they are not replying as I’ve something that I’ve flagged up as a problem told to me on the phone a couple of days later by a different person.

To try and be slightly more positive, I have started taking Dominic to Nursery to try and get him used to a ‘normal’ life. He is doing his very best, but pain and anxiety get the better of him a lot of the time. It is so good to be home though, for both of us, and I’ve certainly settled in so much faster than I thought I would.

Elliot and Lilia don’t seem to have suffered too badly from having me back (we occasionally get homework done before its due in) and the doggies are content to have someone to potter around after in the afternoons. All our frustrations with the lack of medical care aside, life on the outside is immeasurably better than it ever was stuck in a room for 8 months and I’ve started to feel vaguely human, even if I do still feel strangely disconnected from my ‘former’ life.

Thankfully for us breakable adults, children are remarkably resilient, and I’m holding onto the fact that I have seen glimmers of the old Dominic seeping through, so hopefully, pain aside, the same cocky, smart, eccentric little boy will win out and the damage done will become a bad memory.

Thanks as always to the people who continue to think of us and write the most wonderful letters and make the most beautiful cards.

Update 17th January 2011

I’m very sorry for taking so long to update everyone on Dominic. Things have been difficult over the last couple of months and I am emotionally and physically exhausted.

Dominic, unfortunately, is still in hospital. We got to spend a miserable Christmas day at the mercy of the hospital canteen as he was having antibiotics for a central line infection which prevented us from escaping, which kind of set the tone for the start of the New Year. The good news is that he is well in himself for the most part; the bad news is that there is no talk of home yet. He is still losing too much fluid from his stomach (which isn’t working very well) to stay hydrated without IVs.

We have also fallen prey to the unstoppable machine that is hospital management. As a result life has become considerably more difficult and may have long lasting consequences for us when we do eventually get home. Obviously I can’t go into details, but I am trying to summon the energy for a fight that may involve starting a complex complaint process. It’s the last thing we need, especially as the decisions management have made are directly affecting his day to day care.

On a happier note, we were overwhelmed with the generosity of all the people who contacted us over Christmas. Thank you so much to everyone who took the time to write and send things and I’m so sorry to not be thanking everyone personally. Post Pals is a well known name on Dominic’s hospital ward now, as the staff love to see his arms and legs waggling as the post arrives. It really breaks up the day for us as he gets so excited. Elliot and Lilia open their post on the phone to me in the evening, and even though they don’t waggle quite as much, they are still so excited to see who it is from.

Hopefully there will be a happier update soon.

Update 7th November 2010

Dominic will be having yet another operation. At the moment it is looking like it will be this coming Tuesday. It’s going to be a very big and complex bowel operation and the resulting recovery time is likely to extend our stay even longer (probably through Christmas and into the New Year). The whole ward is also about to move for renovations so we will be stuck with no playroom and nowhere to store toys. Dominic is also not allowed into the activity centre so will be confined to his room. It’s obviously going to be a very, very difficult few months for everyone and any smiles will be enormously appreciated.

Update 30th October 2010

I’m very sad to say that Dominic and I are still in hospital and all plans to be home for Elliot and Lilia’s birthdays had to be abandoned as he got a line infection and his levels of pain are increasing.

We did manage to celebrate both birthdays in style though. For Elliot, with the help of all painkillers available to us, we managed to take them all to the London Eye and then to the Hard Rock Cafe before flying back to the hospital. Elliot’s day had a memorable end with a visit from London Fire Brigade after the sparklers on his cake set off the hospital’s smoke detectors. They were good humoured enough to let him have his photo taken with them, and the nurses were of course delighted to welcome them onto the ward.

Lilia’s one wish for her birthday was to have me home. Despite the consultant scaring the heebie jeebies out of me about how ill he thought Dominic was, I managed to force my legs to take me out of the hospital and onto the train. So I left Dominic in very good hands and went home for the night. Lilia didn’t sleep *at all* she was so excited to have me home. I managed to get the children off school for the day and after lots of present opening came and continued the party at the hospital with Dominic.

As for when we get to go home for good, it’s a very difficult question to answer. At the moment they are proposing another procedure (endoscopy and colonoscopy) and then probably another operation. I am terrified this won’t work as they still don’t know what is going on and why he is in such a lot of pain so often.

As always the kindness of strangers has made an unbearable situation more bearable. So many smiles have come through the post. I apologise enormously for not having replied to people, things have been rather difficult of late and I have spent little time doing anything other than focusing on the children. I really wish I could capture the joy they have when something arrives for them. Thank you, thank you, thank you… the nurses are so taken with how happy it makes Dominic that a few of them are signing up groups that they run, so the smiles will be passed on.

Update 4th October 2010

It has been a very, very difficult month, with Dominic missing the start of nursery and then starting to get excruciating pain, which he had to endure for 3 weeks until he eventually went on the emergency operating list just before his 4th birthday. When they operated they found a part of his bowel that they thought was twisting and sewed it in place. Unfortunately he has continued to be unwell, with us only seeing glimpses of my happy, foot waggling boy in-between the tired, grumpy, sweaty boy that has replaced him. He is also still getting the pains intermittently. Currently the feeds that he normally has in his jejunum have been stopped as he was losing too much bile and artificial feeding has been started (TPN). He was unwell and unhappy for a lot of his birthday despite our best efforts, so we will try again when he (eventually) gets home.

Each and every letter and card and gift have been cherished during the 11 or so weeks since we’ve been in hospital. Sometimes they really are the only time he is truly happy all day, and for that I thank each and every person who has taken the time to get in touch.

It is Elliot and Lilia’s birthdays in a couple of weeks and I would be enormously grateful for any smiles that can be sent their way.

An enormous list of thank you’s, as always. Julia and Roger, thank you for the Mr Happy card, very cheery; Isaac, Dominic had no idea it was a cricket bat (he thought it was a paddle for a boat) but I explained all about cricket and he’s better informed now! Dottie Dalmatian thank you so much for your brilliant letters and of course for sending Indy to us. Donna thank you for the great bracelets; Anne Calico the pig postcard was great fun thanks for thinking of us and Dominic adores the Buzz blanket and is sleeping with it every evening; Vicky Shepherd, once again thank you for the Toy Story things and the card which were very gratefully received; Kaden thanks for the great card. Babuka Aliex thank you for the get well soon card; Sarah Gilligan, we loved the rose postcard and really enjoyed the letter and thank you card; Rachel and Adam, once again thank you for thinking of us, the meercat card is up on the wall and the Toy Story drawing pad and card were wonderful. Sheelagh Hawkins, we all love the doorbells, the nurses think it’s especially funny as Dominic insists that they have to ring it to come into his room. Whoever sent the Sing along Mickey CD, thank you, the play specialist had a great time revisiting her childhood with it! Alison, thank you for the postcards; Ruby your handmade birthday card was beautiful, thank you. Jack, Dominic loves the Toy Story phone and stickers and phones Mr Tumble on it all the time! Georgina, thanks so much for the bubbles, playing cards and art set, and of course for the card. Maggie, thanks once again for sending us things from Oz; Kate Dee, thank you for the beautiful card you made him, he saw the boy in the bear suit and said ‘that’s me!’. Sophie P the Duplo was a wonderful gift to receive and he’s spent hours playing with it; Karen Isabell thank you for the pencil case and bag, both are being put to very good use and of course the art case and the Woody keyring, which of course he loves. Maggie (and Damson) thank you for the pirate card and of course the photo of Damson. Kate Thompson and family, thanks for everything, including the heart from Kitty and the book. Kate Ware, loved the elephant book, it got a big thumbs up from Dominic. Mandie, Lilia was so thrilled with her Hannah Montana things, and Elliot with his Ben 10 book, thank you. Naomi the Cars colouring book was great; I’ve never seen anything like it before. Jenny Rust thank you for the sticker book and animals and Carol Moore he loved the sticker scenes; Margret Nagy thanks for all the children’s cards. Wendy thanks for his teddy birthday card and letter; Nicky Pitman thank you for the great hammer picture maker, the spiderman stickers and Belle’s lovely rainbow. Leona thank you for Dominic’s Buzz blaster birthday present, which of course he loves. Ian, Nikki, Lennon and Isla, thank you for Dominic’s card, Toy Story characters and of course the lollipops! Penny Berrill thank you for the reusable stickers and your lovely letter. Becci, Mackenzie and Blake, thanks for thinking of Dominic as always and for the Toy Story bits. Mandie, the paper was amazing, and he loved the card, flannel and puzzle, I was very impressed with your Disney writing. Wiggly bags, thank you so much for the great bags for his line. Hayley (in case you’re reading this), thank you for the lovely t shirt and for frequently cheering him up when everything I have tried has failed. And of course Viks for the giggly toy, beautiful handmade card and most amazing huge birthday card which we have managed to stick on the wall with all the others (and of course for Post Pals).

If I have missed anyone I do apologise, sometimes it is hard to keep track of what the children are opening at home.

Update 25th September 2010

The surgery got cancelled at the last minute yesterday as a critically ill baby needed the theatre slot. He’s on the list for Monday unless he deteriorates more this weekend. Monday is going to be another very long day waiting to find out when he’s going down.

Update 23rd September 2010

Dominic is on the emergency surgical list for tomorrow afternoon. It’s another big operation to try and correct what they think is an intermittently twisting bowel which is excruciatingly painful for him. He’s already been in GOSH for nearly 10 weeks and it is likely to extend his stay even further. Added to this, it is his 4th birthday in a week and Elliot and Lilia’s mid October. They could all do with as much cheering up as possible. It’s come as a real blow to everyone.

Update 24th August 2010

So, Dominic has turned this into a bit of a hospital marathon, and we are really all scratching our heads. The issue is simply that he can’t stay hydrated. He’s had a new feeding tube placed in his bowel but it’s making bile pour out of his stomach. So much so we can’t get enough feed into him to stop him getting really dry so we’re stuck in hospital. No one has had any bright ideas yet and time doesn’t seem to be helping, so at the moment there is no end in sight. Things have been very difficult and seem more so now as it seems like we really have run out of ideas. Dominic is due to start his new school in a couple of weeks and so much preparation has been done to make sure he can start with everyone else. At the moment that’s looking increasingly unlikely. It’s not been helped by the ward deciding to put an infection status on Dominic, not because he has one, but because he had one at the beginning of 2009 and their protocol states that it cannot be removed until he has no ‘indwelling’ devices. Unfortunately his feeding tubes are precisely that and they are long term, so the play room and activity centre are now out of bounds which makes for incredibly long days with a little boy that doesn’t understand and two very bored siblings. Elliot and Lilia have really been struggling. They’ve been spending long days on the ward with very little sleep which has taken its toll on all of us. I wish I could organize some distractions for them, but it’s just so difficult as finding someone to take them so early in the morning until so late at night is so difficult and so much to ask someone else to do. Elliot has been waking up sobbing in the night apparently, and Lilia just clings to me and cries when it’s time to go. It breaks my heart.

Thank you so much to everyone writing to us. We do try and send thank you’s when we get addresses to write back to. Apologies if we miss anyone out, each and every gift, letter and card is very much appreciated.

So many people to thank and apologies to anyone I have missed… Becky thank you for the cards and the lovely hand drawn pictures. To Leona – Lilia loves your letters, if you let us have your address we’ll write back. To Rachel, thanks for your letter to Lilia. Karen thanks for the brilliant Buzz keyring and the letter. Ellie thanks for the colouring books and Elliot’s book. Alison – Dominic loved the tissues and the colouring book. Jane, thanks for the colouring book with Darth Vader in! Craig thanks for the card and pictures. Natalie, Cerys, Kaitlyn and Shannon, I wish we had your address so we could have written a thank you letter, especially for the chocolate! Sarah – you’re a star, such generosity, everything was perfect and there were squeals of delight. Rachel and Adam, your hand made Dominic laugh out loud and thanks for the flying fairies and dinosaurs, we flew them up and down the corridors. Anne, your paintings are just so beautiful and are hanging in our art gallery wall in his hospital room. Amethyst and Breeze, cool light sabre thanks, he’s given it to his pig toy to fight with at the moment. Rex the dinosaur – thanks for writing on behalf of the gang. Thank you to whoever sent the Toy Story sign for Dominic’s bed. Penny, many thanks for the pig, the jumper is proving popular for putting mini toys up so piggy can pull them out to scare the doctors. Lennon, thanks for the brilliant masks and the soft Buzz. He’s currently sitting next to Woody wearing sunglasses. Teresa, thank you for Lilia’s card and the sponge painting set. Becci, Mackenzie and Blake, thanks for the activity books and sweets. Finally, Viks, thanks for Elliot’s Dr Who ship.

Update 30th July 2010

Dominic’s operation went ahead as planned on 19th July. It’s been a long haul but I’ve finally got to the point where I’m not sitting by his bed worrying about what he’s going to challenge the doctors with next and I can start thinking about possibly taking him home sometime soon. As always, we are struggling to get his body to accept being fed, and so as predicted the kids lost out on going on the holiday that we had all been so excited about for so long. I also got to spend the fourth year in a row celebrating my birthday in GOSH, fun! He’s regressed hugely in his gross motor skills and is struggling to sit which is concerning, but I’m delighted that he is not retreating completely into his shell (well not in hospital as the nurses and doctors know to talk to him about Star Wars), but he has just hidden behind my hand on the two occasions we’ve been able to leave his room.

He’s also undergoing lots of tests while he is here to try get to the bottom of what is going on in his little body. And it is a little body – he’s the size of a one year old – which turns out to be due to the fact that he doesn’t produce enough growth hormone. So we’re probably adding in a nasty injection to his ever growing list of medications. Not looking forward to having to give that one.

Dominic has received some truly lovely post whilst he’s been in hospital and we’ve tried to reply to everyone who has included an address or email. Apologies if we’ve failed, but sometimes in all the excitement addresses might get lost, or the kids will open them when I’m not there. But thank you to everyone who has made Dominic, Elliot and Lilia smile when they are really struggling to find things to smile about.

Update 9th July 2010

Dominic’s big bowel operation has been brought right forwards. He’s now having it on 19th July. It probably means missing our mini holiday to Camp Bestival (he’s a big Mr Tumble fan and was desperate to see him and it’s all he’s talked about for months). It’s come as a real shock. I haven’t even attempted to break the news to his brother and sister who will fall apart too.

Update 8th July 2010

June has been a difficult month for Dominic. His health has been stable enough, despite a bout of chicken pox and his jejunal feeding tube coming out (which causes great panic around here as he has blood sugar problems so it means a mad dash to hospital). He has, however, had a lot of stays in hospital as the doctors try to understand what it is that isn’t working properly in Dominic’s body. His anxiety levels have risen with each stay and he is now terrified about the next one which is happening next week. Elliot and Lilia have been picking up on this anxiety and have been worrying in their own quiet ways as well. Hospitals mean losing mummy and worrying about their little brother and it puts a lot of strain on them.

Dominic doesn’t cope with change very well and his world has been thrown into turmoil by the loss of his beloved one to one carer at pre-school. Unfortunately, the pre-school didn’t manage the situation at all well, despite having months and months to prepare for it and Dominic is a shadow of the boy he was. He’s tearful and clingy and won’t speak to or look at anyone except those closest to him. It will take a long time to rebuild his confidence as his safe secure world has been turned upside down with no forewarning or preparation. Currently, I can’t even start rebuilding his security with all the hospital stays unsettling him.

He is also facing a big bowel operation. Some problems were found when his feeding tube was being replaced. It’s a very daunting prospect as his bowel doesn’t recover well from operations and there is always the risk that it wouldn’t recover at all. We’re awaiting a consultation with his surgeons and will go from there.

On a more positive note, his new manual wheelchair has arrived and is a huge success. The wheelchair service couldn’t offer anything suitable so I self funded a lightweight chair. It was worth every penny. For the last 4 years he has been completely reliant on adults to help him move. Now, suddenly he wants to be mobile. He’s learnt to change a Wii game and to come and find me to see what I’m doing. It takes my breath away every time I turn around and he’s there… it’s been a long time coming and I’m enormously proud of him.

A big thank you to everyone who has sent things. We have received some wonderfully thoughtful gifts and some brilliant letters and cards. I wish you could all see how excited he gets when it arrives. There is lots of arm flapping and leg waggling in anticipation going on! Enormous thanks to everyone who has sent things to Dominic. He’s going through a very difficult time at the moment and is very sad and anxious so every time something arrives it really is the highlight of his day.