Story Written 2018

Ava was starved of oxygen around the time of her birth. She was extremely poorly as a newborn and was rushed to intensive care for specialist treatment. Unfortunately, Ava sustained a massive brain injury and suffered lots of seizures. Her prognosis was not good, so on the advice of the hospital we switched off Ava’s life support machine and prepared for her to pass away. However, this determined little girl decided that it wasn’t her time to go and has decided to show the world just how much love and joy she can bring into everyone’s lives.

Due to the brain damage Ava has, she can’t walk, talk, swallow safely or use her body the way it was supposed to. She requires full adult support 24/7. She is fed through a gastrostomy tube into her tummy, is suctioned frequently to remove the saliva from her mouth and airways, and is oxygen dependent.

Ava has fought sepsis three times and has spent time in intensive care due to a twisted colon, which was removed and she lived with a colostomy bag for nine months before surgery successfully rejoined her bowel, and then again for a respiratory arrest.

Ava has lots of medications during the day and often uses a nebuliser to keep her lungs healthy.

Despite all of these problems, Ava is a very happy and sociable little girl who is loved by many.

Update 29th August 2026

Ava recently had an ICU stay but is now back home. The hospital say that they believe Ava is still in type 2 respiratory failure, and her future is so unknown, but despite this she currently remains well and we’ve just enjoyed a week away in Cornwall making memories.

Update 31st May 2026

Well, Ava certainly has had a very rocky six months.

Just before Christmas, she seemed very uncomfortable. She wasn’t happy in any position and was even more uncomfortable when sitting in her wheelchair, so we assumed she was experiencing another pain flare-up with her dislocated hip. How wrong were we!

In January, her tummy around the gastrostomy stoma (where her feeding tube goes into her stomach) was leaking badly, and her tummy was hard and distended.

She was admitted to our local hospital and put on IV antibiotics. She had an ultrasound which showed a build-up of fluid in the layers of the skin, so she was transferred in the middle of the night to Norfolk & Norwich Hospital for a test on her tube to make sure it wasn’t leaking into the tissue. Thankfully, it wasn’t, so she was discharged and given a course of antibiotics to finish.

That seemed to do the job. However, come February, her tummy became distended again and a huge red swelling started to track across her abdomen.

So off we went back to the hospital, where she had another ultrasound and was diagnosed with an abdominal wall abscess. She was in so much pain.

Ava was admitted to the ward and restarted on the IV antibiotics she had been on in January. She then had the abscess drained under ultrasound guidance using a needle. That was successful and, after 48 hours, we got the results back and her antibiotics were changed to two new ones.

We thought Ava would be on the home stretch then, but sadly that wasn’t the case. The abscess had recollected and grown bigger, so the decision was made to operate.

Unfortunately, due to Ava’s complex medical history and her vulnerability with her breathing, they wouldn’t put her under a general anaesthetic. Instead, she had a local anaesthetic in her tummy and an incision and drainage procedure carried out on the ward.

Her wound was packed daily and, after 14 days, she was discharged home.

The wound was looking great and the packing was going well. It had just about healed after two weeks and then, bam, the abscess had recollected, her tummy became distended again, and we were back to square one.

She was admitted for another 10 days on IV antibiotics and underwent another incision and drainage procedure, followed by more daily packing and dressing changes.

Poor Ava. Over the last 10 weeks, she’s had I don’t know how many cannulas placed, along with countless attempts at cannulas and blood tests. Her veins are so wiggly and scarred from years of trauma, yet she was so brave and barely complained at all.

She managed to get back to school for a few days before half term started and is still having her wound packed and dressed. She had an ultrasound last week which showed a small collection still present, but time will tell whether it flares up again, which we really hope it doesn’t!!

We have a busy time ahead, with Ava finishing school as she’s off to college in September, and we’re moving house during the summer holidays!

Our regular post senders have been doing a fantastic job with the happy post. The girls are so lucky to have you!

I’m so awfully sorry I don’t thank you enough, but please do know that you are amazing people and you all deserve medals for your kindness: Sarah McCulloch, Beverley and your amazing little girl, Jenny Orpwood, Alice and Poppy, Sue Stod, and Anna L.

Thank you to PostPals for the amazing balloons (and boxes!) that arrived in February, and for the Fairy Worry Kit.

And thank you to everyone who sent cards over Christmas and the New Year, to the schoolchildren and college students who wrote such lovely letters, and to anyone who has sent a drawing, painting, or gift. Every single one has been a joy to receive.

Update 30th October 2025

Things have been pretty busy for Ava over the past six months.

She has been working hard on her rolling and bench sitting in her weekly physiotherapy sessions, and has been working really hard in music therapy, playing a range of instruments. She has apparently become very good on the piano and is beginning to be very vocal, as though she is singing along.

Her health has been fairly stable. We micro manage every element of her care to keep her as healthy as we can, and that involves lots of medications, nebulisers, chest physio, and deep suctioning multiple times a day.

Surgery for her hip reconstruction was put on hold, which continues to bring its own challenges, and every now and again Ava experiences bouts of pain that have been quite disruptive to her sleep and require lots of positional changes throughout the day and night.

Ava’s spine has also deteriorated slightly due to her dystonia and rotated pelvis, so she has had a new scoliosis Lycra suit, much to her disgust – it’s definitely a love-hate relationship!

Ava is now in her final year at school. Our local schools only educate up to 16, so we are now looking at a specialist college setting for her to attend three days a week from next September.

Ava has a busy few months ahead, as she is due to transition into adult services at the hospital at the age of 16, which is hard to believe, and means lots of new doctors to meet.

Ruby is now in Year 8 at secondary school and is working really hard. She puts her all into her schoolwork and has been really proud to be a sibling ambassador for the local children’s hospice. She sets such a good example and is kind and helpful with all the siblings who attend. Ruby is also learning to play the cornet.

Millie is now in Year 1 at primary school and is also doing well. She is kind and caring towards her peers and will often go out of her way to support others with additional needs. Millie often comes across as very happy and confident but is actually really anxious, so we are trying to get some support for her and unpick what causes her to feel certain ways.

For those who supported big sister Freya previously – she too is doing absolutely amazingly! She is now in her final year at university studying Forensic Science, and we can’t believe she will be turning 21 in May!

Update 15th October 2024

Update 28th February 2024

Life for Ava has been very busy.

Over the last 12 months she has had a lot of appointments and assessments.

The biggest thing that changed for us last year was that we moved house. Ava has settled in really well to her new bedroom and can enjoy getting all around the house in her wheelchair and out into the beautiful garden we now have. She’s been loving the birds that visit.

Health wise has been a bit yo-yo. Ava now has her own chest physio vest machine which has been fantastic for keeping her lungs clear of secretions and chest infections have been much milder and treated at home and not in hospital. 

Sadly it was confirmed that after a lot of pain and reduced movement in Ava’s right leg she has a dislocated hip. Unfortunately it is a common occurrence in children with cerebral palsy and we’ve been lucky to have avoided it for so long but now it’s a wait to see if surgery will be an option to have it fixed, as Ava’s dislocation is complicated by her pelvis being twisted due to her dystonia.

Ava is also awaiting an ECG and an Echocardiogram due to some new and unusual heart decelerations during sleep. So will update on that next time.

We have been so grateful and blessed with all the lovely post that has been sent to Ava, Ruby and Millie.

I just wish there was more we could do to say how much of a positive impact each letter makes, you all do so much through your kindness.

Thank you to you all .

Update 25th August 2022

Ava’s health has been a bit like a yo-yo, up one minute, down the next. Mainly chesty respiratory infections. We’ve had a couple of hospital admissions for antibiotics and IVs which helped Ava recover.

Just recently Ava’s undergone a few tests, bloods, X-rays and other assessments as she’s been experiencing a lot of leg pain, they suspect her hip may be slipping out of the socket temporarily before returning to its normal position, so we’re awaiting an orthopaedic review.

Things at home have been a little crazy at times as most of us have been Covid positive, one at a time so it seems to have been a long 3 months with not much recovery in between, the only person not to have caught it yet is Ava which is some kind of miracle!

We’d like to send huge thanks to everyone who has sent post to our girls and supported us over the last 12 months, your cards, letters and gifts have put big smiles on everyone’s faces.

Monthly parcel senders we are hugely grateful for the kindness and commitment you make during the year, we can only apologise for not personally thanking you every time.

Update 26th March 2021

Not much has changed since our last update. Ava recovered well after the antibiotics she needed for the chest infection and remains at home waiting to hear when she can return to school. Finally had my new Lycra suit delivered so hoping that the support that provides will help straighten up my back and shoulders. Thank you for your continued support and lovely letters.

Update 19th February 2021

Ava remained well in shielding and was looking forward to returning to school in September. However, due to restrictions around AGPs and the use of suctioning in school, Ava’s return to school was delayed until November. Sadly then she developed two infections in her gastrostomy/tube feeding site on her tummy and ended up being admitted to hospital due to some complications the antibiotics had on her digestive system. 

However she recovered quickly and made it back to school on a part-time basis for two and half weeks just before the Christmas holidays, she had so much fun! 

We enjoyed a quiet Christmas at home, and thanks to going back into lockdown, Ava’s had to remain at home and recommence virtual learning with school. 

Lately, after a respite stay at the children’s hospice, we’d noticed Ava wasn’t quite herself and was needing more breathing support and chest physio to clear her secretions and test results shown that she is fighting a bacterial infection, so we’re just about to start a course of antibiotics.

We would like to say a million thank you’s for the fantastic post and gifts Ava, Ruby and Freya have received.

Your little hello’s, your wonderful letters have brought us so much happiness in such unusual and difficult times. 

Update 20th August 2020

Ava has been reasonably healthy lately. With the whole family in lockdown we were able to stop a lot of bugs coming into the house and this has had a huge benefit on Ava’s general health. 

She had a hospital admission in February where she received IV antibiotics for a chest infection. We work really hard on her chest therapy and nebuliser routine to keep her lungs as healthy as possible. 

We’ve had a few “virtual” appointments due to shielding and being in lockdown. Since restrictions have lifted, we’re still being extremely careful as Ava’s respiratory system is so vulnerable, we need to protect her as much as possible now before winter germs/viruses reappear. 

So we have exhausted our Disney DVD collection and busy ourselves at home, but when we start getting a bit claustrophobic we venture to the grandparents house and enjoy some fresh air in the safety of their garden.

Update 7th July 2020

What a strange few months we’ve had! Lockdown has been a very different experience for us all, however we’ve stayed safe and Ava has been really well.

I think the slower way of life and little exposure to every day germs has done her the world of good. It’s been quite a challenge to try to complete Ava’s care/therapy needs, along with her home schooling and her sisters homeschooling schedules too. Our days got very busy, very hectic and we felt completely overwhelmed with it all, so had to slow things down and not stress about what wasn’t finished. 

Due to shielding Ava, we were lucky to have a small garden to enjoy some sunshine and fresh air so didn’t feel completely trapped inside the house. 

We still can’t believe that our amazing girl turned 10! It was a huge milestone we never thought we would see. 

Ava celebrated with lots of Frozen 2 decorations and cake. It was a totally different day to what we had originally planned, so hopefully we can make up for it with a big party next year. Huge thanks to everyone that sent Ava a birthday card and/or gift. It’s so very thoughtful and we feel very humbled that so many people cared and sent best wishes in her direction.

I must apologise for the lack of personal thank you’s to each individual because since Ava’s birthday we welcomed a new baby girl into our family and our days have been busy on a different level. Girl number 4!! Millie Faith is adored by all her big sisters and has now completed our family. Ava spends lots of time looking, smelling and having a feel/cuddle with Millie. 

Much love and a huge thank you again to everyone who sends post in our direction. The girls really appreciate the kindness and gives them a much needed boost.

Update 27th November 2019

Ava had surgery on her tummy to remove a surgical mesh used to hold her bowels inside her abdomen (after surgery in 2016). She did absolutely amazingly well to recover so quickly after the operation, but sadly her incision opened and we’ve had to dress it daily for the last 4 weeks to get it to heal. All this time off school recovering but hoping to return back part time in December to enjoy some of the fun before Christmas holidays begin. 

A big temperature spike (20th Nov) in the middle of the night caused Ava to have a big seizure, and as predicted wouldn’t stop after her rescue medication so we had to call 999. After a fabulous check over by the paramedics and a few phone calls to the children’s ward, we were able to keep Ava home, safe in her own bed to recover, and she’s been fine since! 

We have some lovely Christmas events coming up so will let you know how those go soon!  Ava, Ruby and Freya have continued to receive such wonderful monthly projects, each gift has been perfect and you know are girls so well. 

Thank you Narelle, Amy and Tasmin for your kindness and generosity. 

Big shout out and thanks to Becky B for the continued amazing Disney postcards. They really do cheer Ava up and we love finding out what you’ve been up to. 

And to each and everyone for the continued support and love. 

Ellie E for the lovely photos of your pets, and little bits that you send each month.

Rebecca F for the most delicious hand cream.

Kayte for the handmade bracelets

Thanks you to everyone who sent Sainsbury’s cards. 

To the Girl Guides who created Ava the most incredible super hero cape and story. It was fantastic!!

Sally Plummer for Ruby’s lol watch and balloon 

Bev for Ruby’s flower fairy pot and book

Emma  for the emojis

Narelle for Ruby’s  barbies and ty beanies

Albie Lockie from NZ for the lovely letter/ origami butterfly/scratch and sniff stickers.  Ava thought it was very funny that your dog was trying to stand on her letter

Emma Hendriks from NZ for the post with Disney quotes. 

Dottie mail

You’re all amazing !!!! 

Update 1st October 2019

Thank you everyone for the continued support in the lovely post we have received recently, the excitement certainly hasn’t worn off yet! 

Extra special thanks to, Becky B, Narelle, Tasmin,  Amy, Ellie E, Geraldine, Beverley, Audrey, Tashja Victoria and to GIK for the amazing box of Disney goodies!  Dottie the Dalmation, Tales of Mr G, to those who have kindly sent Disney Pixar cards from Sainsbury’s, and M&S little shoppers, we can’t thank you enough. 

Also a massive thanks to everyone who donated for Pals to receive a Wheelchair Barbie, it’s the most played with toy this past two weeks by everyone who’s been to visit us! Ruby absolutely loves her. 

Ava’s health hasn’t been too bad, in complexly needs terms, however after a few weeks of mystery symptoms and episodes we found out that she had grown a nasty group C Streptococcus bacteria on her chest. So we’ve had to up her chest physio routine at times, and given a few courses of antibiotics, which then has consequences of its own with her already delicate bowels/ digestive system! 

Really hoping that we manage to get on top of it soon before the horrible winter germs appear and compromise her even more.

We’ve also been monitoring her abdomen scar for a couple of months as it looked like a blister had developed, her surgeon suggested at first sight that it could possibly be a stitch sinus, which is very common for people who have surgical mesh, that an internal stitch irritates from within, and that once the skin opened, could be snipped and re-healed. Simple right?! However nothing is ever that simple in Ava’s world, the area has continued to increase in size, colour and appears to almost look like the mesh is being rejected, with the skin becoming very delicate and weepy. So having to be very sterile in that area now and hoping that infection doesn’t take hold. 

Update 7th March 2019

Since joining Post Pals we have been so lucky to receive the most amazing post. Every piece is read and truly appreciated. It has made such a difference in the girls’ mental health to know people think about them and really care. I don’t think we’ve ever seen them smile so much!

Huge heartfelt thanks go to:
Becky B – your postcards are just divine.
Victoria for the Valentine’s balloons and post.
Dottie the Dalmatian for my new teddy friend we’ve named Winter and your picture updates.
Fiona and Andy for the postcards.
Narelle for the most Ava appropriate monthly parcels.
Tasmin for Ruby’s monthly parcel. We loved the pictures of your dogs Sophie and Sapphire. We have a little dog called Bruiser. He’s almost 8 years old and is a Chorkie.
Audrey you sent the most wonderful Christmas book from NZ and recent postcard.
Amy G for Freya’s monthly parcel, she’s been meaning to write a thank you back but has had a huge increase in homework since starting year 9 at school.
Emma, Geraldine, Anna, Bear Hugs and Project Parent for your post and gifts.                                                                                                                            And to everyone else I’m bound to have forgotten including scout, beaver, brownies guide and school/college groups, your post has been wonderfully uplifting.

Ava has probably had one of her best winters ever in terms of her health!
Her Dad and I have worked extremely hard on keeping her chest as healthy as possible with strict physio, antibiotic nebuliser treatment and deep suctioning routine which was a success. She remains continuously on oxygen but only on a small amount, which for winter is fantastic.
Seizures aren’t usually too troublesome for Ava, but unfortunately we had one episode of her emergency buccolam medication not stopping the seizure, so we had to call 999 and ended up with a hospital visit.
This week Ava didn’t cope very well with one of the viral infections going about so ended up with another hospital trip and course of antibiotics, but she’s recovering well.

Ava attends a local special needs school. She absolutely loves being with her peers and thrives in the classroom when well. She’s learning to communicate on an eye gaze machine that she controls with her eyes. This technology is fantastic at allowing someone who cannot control any of their body movements the chance to speak.
We’ve had many appointments over the last two months: a respiratory review with a consultant at Addenbrokes, and a physio review where Ava has been measured up for her new Lycra suit and gloves. Once wearing these items she will be known as “Ava the incredible” as she’ll look like another member of the “Incredibles” family (Disney).

Sadly we had to say goodbye to Ava’s Great-Grandad as he passed away on New Years Eve, just a few months before his 90th birthday.
Ruby too has been busy, she’s been having regular hearing tests for the past year as she has hearing loss in her left ear. She finally had her hearing aid fitted and has coped amazingly with it and it’s made such a difference in her hearing!

Story written 2010

Brooklyn was born on the 21st of September 2007 at just 24 weeks old and weighing 970 grams. Through his extreme prematurity he suffered respiratory distress syndrome, group strep b, high infection risk, jaundice, anaemia, chronic lung disease with Bronchopulmonary dysplasia. The paediatric team that delivered Brooklyn gave him just 20% chance of survival.

Once the team had stabilised Brooklyn he was transferred from Lister Stevenage to Luton and Dunstable Hospital but still inside the plastic bag he had been put directly into at birth.

On the 24th of October 2007, due to worsening respiratory failure whilst being ventilated, a CXR was done which showed changes consistent with chronic lung disease and patchy atelectasis, which is a collapse of the lung tissue. The diagnosis for Brooklyn was that he had a PDA with left heart ventricular over load.

Brooklyn spent his first Christmas in the NICU, eventually coming home at the end of January 2008 on oxygen. Brooklyn is now aged 2 and has Cerebral Palsy – mixed ‘athetoid hypertonia’. He cannot and will not ever be able to walk or sit. He has severe stiffness of the lower motor system followed by a floppiness.

Sadly Brooklyn’s chronic lung disease still remains and he travels frequently to hospital by ambulance when his breathing deteriorates.

Brooklyn has autistic tendencies too, which causes him to have many frustrations.

Please take a look at Brooklyn’s CarePage to read more about him.

Update February 2014

Brooklyn is moving on from Post Pals. Thank you to everyone who has supported him and his sisters over the years. We wish Brooklyn and his family all the best for the future.

Update 29th September 2013

Brooklyn is still on his life support machine but they have had to now run it through the nose and not through the mouth as it is more comfortable in the long run for children who are not going to come off them yet. He has gone back onto the paralysis meds and so has no awareness that anyone is there at all so I’m going to get some sleep I hope until tomorrow. Please pray everyone and the chaplain is going to visit him tomorrow too.

Update 25th September 2013

Brooklyn is very poorly. He has been rushed into hospital and is fully ventilated and unable to breathe on his own.

Update 14th August 2013

Brooklyn is well at this present moment in time, although he is still up and down respiratory wise. His latest admission to hospital was last week where he desaturated to 85 on air and kept me quite on my toes! As everyone who reads his updates will know, he is quite unsociable with his breathing and for some reason seems to think it’s ok not to take in oxygen. However, we love him regardless and keep fighting for him.

We have been told that any forthcoming operations are not advised as the anaesthetic is sure not to agree with him and we could find ourselves without our little boy, so we are caught between a rock and a hard place between what he needs and what he can actually have. We are all keeping strong for him and using the summer holidays to attempt small adventures to places that he will perhaps relate to and enjoy.

Update 19th May 2013

Just a quick update. Brooklyn will be back in hospital on the 3rd of June for an operation as his sleep apneas have become worse and his saturations are really poor at night. He is still smiling though and as a family we try to keep normality going, although I’m personally shattered, as I’m sure all you mums can relate to. I shall let all know know what happens after the operation.

Update 15th April 2013

Over the past month Brooklyn has been quite up and down. We have not really known what each day will hold but hoping for the best each time.

Brooklyn has had several hospital admissions due to respiratory distress (the ambulance crew are getting to know him very well). It was decided by an ENT consultant that Brooklyn may benefit from having his adenoids and tonsils out which was due to happen today (15th April) but sadly the consultant anesthetist doesn’t think he is stable and strong enough with his lungs to be able to undergo the anesthetic, so we are going to re-schedule in 6 weeks and see if that will make any difference for us.

I would also like to thank the people that sent Brooklyn, Lisa and Amy, an Easter egg. It was very kind and thoughtful.

Update 30th December 2012

Firstly, I would like to say a big thank you to all the people that follow my beautiful Brooklyn and who have sent lovely Christmas cards, and to all the hard work the reindeers have put into writing to us this month and sending gifts which have been placed under the tree.

Over the last months we have had some worrying times with Brooklyn. He has been in and out of hospital and been keeping us on our toes. Breathing has not been his greatest asset of late and the paradoxal movement of his vocal chords doesn’t allow for him to saturate well. The staff in the resuscitation areas have been great and there is always a lovely team trying to keep Brooklyn as calm as possible. With the latest bout of illness, Brooklyn’s breathing has become quite bad and a very close eye is being kept at all times. His sisters have been amazing and as always are on tap to help out. He has been saturating at 85 and so we have been told he will need to be operated on (I will keep you up to date on this).

Brooklyn has had some great days though too and has finally learnt to say ‘mummy’ and his sisters names! He is able to communicate a lot better with us and make his needs much clearer.

Lisa is 14 and looking forward to turning 15 in January. She is currently working her way through her mock exams whilst being a brilliant helper to Brooklyn and myself allowing me times to rest up when needed. She still loves to dance and has recently become very interested in baking cakes and other bits. Santa is going to being her a cake pop maker.

Amy is now 13 and acts like a second mum to Brooklyn. Since December she has become actively involved at the yard and has taken on the responsibility of looking after our horse as I cannot at the moment. She rides 3 times a week and would love to become some form of vet physio when she’s older. Amy has one passion only now with pure tunnel vision and that is for horses. She came first in the last dressage competition which was a wonderful achievement for all her hard work. She helps to care for Brooklyn and every morning she shares the duty of getting Brooklyn dressed with her sister and then makes me a tea before school. She really is wonderful.

We all pray that our wonderful little fighter remains as he is and constantly proving people wrong. He made it to five in September and that was a day in itself to rejoice. Everyday is a miracle and to be thankful for.

Wishing all the Pals and everyone involved, a very merry Christmas and God bless all.

Update 16th November 2011

Brooklyn has suffered on and off quite badly since January. As you know, in January he caught Pneumonia, which to be honest has left its scar and made him so much weaker. He does however carry a smile most days and brings a massive amount of joy to us a family. We are still holding out that one day we will be told he will make an anaesthetic and then we can yet again consider the stem cell treatment.

For now, Brooklyn is back again under the ENT care, neurologists and has just received his first treatment of botox to his legs. He was cast on Monday and hasn’t really had any sleep due to being in pain every minute of the day. He exhausts himself by the evening and then by around midnight he is able to grab a small amount of sleep before the pain wakes him again. His sisters, Lisa and Amy, have been amazing and they help me everyday and without them I really don’t know how I would cope or get through the days.

Brooklyn has learnt to count to 10 and loves nursery rhymes and number counting now. He shows a real passion when counting rhymes are played or sung to him. He still loves to watch his DVDs and in fact he is at his happiest when he receives a new DVD. He calls them “D”.

Everyday is a blessing for us and I hope to one day write an update that fills me with joy rather than the sadness I feel when I update. Brooklyn is a positive fighter of a little boy and I ask everyday people keep him in their hearts.

Thank you for all our post.

Update 7th July 2011

Dear all past readers and new. Firstly I must apologise for the lack in updates but things have been a little rocky, although there have been good days too.

The last update talked about the pneumonia Brooklyn suffered in January. Since then he has been up and down. We have been waiting for a placement at a specialist hospital so that Brooklyn’s legs can be looked at but so much time is passing so very quickly. Lisa and Amy are my rocks and without sisters like he has I don’t know how I would manage.

Brooklyn seems to have at most a fortnight of happiness and activities that distract him from his everyday pain, but then the slightest illness seems to drag him down. Just a few weeks ago I took Brooklyn and the girls to the farm for some fun – they had a wonderful day full of laughter but it was so short lived. I honestly thought that it was time we interacted with friends and pets again seeing as the simple things like watching the dogs in the park and our cats run around make him laugh so very much. His breathing started to deteriorate and his skin started to swell and bleed. I tried everything to help him but by the time the paramedics arrived Brooklyn was unconscious. I cried so much, I couldn’t believe he was being offered his angel wings yet again! Not now! I sat at his bedside while the doctors did their bit and miraculously kept him alive. We never know if he will stay in this world or if he will attach his wings and leave.

Update 29th January 2011

Once again I find myself apologising for the late updates, but it had been very hard for us over the past few months. I don’t really know what to write to be honest as I look at Brooklyn sleeping peacefully and want to tell you all that everything is ok but we have had laughs and tears of late.

Christmas was lovely and Brooklyn received some lovely cards and prezzies. The reindeers were very good with their letters and he listened as I read every one to him. He enjoyed opening his post so much; it was great and kept him occupied at times of difficulty.

The week before Christmas I took the plunge and took Brooklyn to Italy for his baptism. The plane journey was really frightening for us as he had to be on a high flow of oxygen for the entire journey to make it. The ceremony was beautiful though and gave me a sense of peace.

Without going into all the details, we have just spent 11 days in hospital as Brooklyn caught pneumonia which almost took him from us. The illness has sadly exacerbated his CP and now he has no use of his legs to be able to straighten them or his arm. The spasms are pushing his hip out if its socket too. He has been dosed up on morphine for the pain and we are waiting now to go to a London hospital to see the surgeons there. It’s a little confusing as the brain damage shouldn’t really have let this happen.

I will update again but it’s very sad and difficult for us all. His sisters have been great and their friends have all offered to help and put them up to help out.

Update 23rd November 2010

Firstly I would just like to say thank you for the cards and letters we received last month as they were most thoughtful, as always.

Brooklyn is currently in hospital, we are now on week two. It has been 6 weeks since Brooklyn last ate any food and the doctors are trying to work out what could be wrong. He is breaking out into sweats in the night and this morning his pyjama top and vest and the bed sheet had a huge amount of mould growing onto it, as you can imagine this has caused huge concern (this is how much he sweats just over night). We go through one pair of Pyjamas per night.

Brooklyn is now having his bloods and urine tested for salts. Hopefully he will soon have a full assessment as his sats are not stable either, as he is suffering respiratory distress. He is still smiling though and I will update as and when I can.

Update 17th November 2010

Brooklyn is currently in hospital and it has been 6 weeks since he last ate. The doctors do not know what’s wrong but sadly the weight is dropping off him. He has Hugo Mouse as company from Sarah.

His sisters Lisa and Amy are being so good and supportive. Please all keep him in your thoughts.

Update 23rd September 2010

Thank you to the very kind people that sent Brooklyn a birthday card. He had a lovely birthday at home with us all and we decorated the dining room with lots of Toy Story bits. We bought him the pink talking cuddly bear from Toy Story 3 and he loves it. It goes everywhere with him.

Update 12th September 2010

I would like to say thank you again for all the kind cards Brooklyn has received this month and the lovely thoughtful letters. Some of you have put your address on the back and I would normally reply to you but have been rushed off my feet.

Amy has started secondary school and is having a great time. Lisa is glad to be back with her friends.

Brooklyn is in hospital at the moment with respiratory distress so I am not getting much sleep. He has formed a bond with Buzz from Toy Story and has a Buzz Lightyear in his bed to keep him company. I will keep updating as and when I can.

Update 8th August 2010

Firstly I would like to apologise for the delay in Brooklyn’s update but every time I think I have 5 minutes to sit down and write something happens!

I would like to thank all who have taken the time to email, write, and send little gifts in the post. It is true to say Post Pals is a wonderful thing. Brooklyn recognises now when a package is put in front of him that there is a little goody inside and he can’t wait to dig in! He loves listening as I read his cards so please don’t stop sending him letters.

I would like to flood this page with good news and yes Brooklyn has had some really good days where he has been so happy. He recently received his TomCat tiger trike which is amazing as it gives him a chance to be pushed around the garden and even have short trips out. Because of the design, as he is being pushed around it gives him quite intense physio to his legs which are sadly still cramping up quite severely.

We tried to get Brooklyn in again for stem cell treatment but received a letter saying NO! He cannot travel by plane due to the oxygen change and is still not strong enough to undergo a general anaesthetic as he will not wake up if he does.

As a family we still persevere everyday. Brooklyn has lost a lot of his memory at the moment, so whereas before he was talking slightly saying mum dad and animals, he cannot remember any of this now.

At this precise moment Brooklyn is quite poorly as he has caught a chill to his chest which means for him that his airways have tightened up, and the paradoxal movement of his vocal chords make it difficult for him to breathe. We’re trying to keep him out of hospital, so fingers crossed. I will update again as soon as I can.

Update 14th May 2010

Firstly I would just like to say that everyone who left me a contact address should have received a heartfelt thank you from Brooklyn. Your post and kind words meant not only a lot to us as a family, but also to little Brooklyn, who I have to say had so much fun opening his cards.

I don’t really know where to start on Brooklyn’s update as he has been so up and down. I think I have good news and then it all comes crashing down around us again.

Brooklyn’s health has been very unpredictable. He started the month quite positively and with lots of beans inside him and full of smiles. As a family we have been trying to keep our chin up and stay positive as we know that Brooklyn can become ill at the drop of a hat.

Brooklyn has started treatment at a centre called the CPPC which I was hoping would provide the miracle answer for him with regards to strengthening him up and giving him a better chance of a normal life with regards to his sitting and possibly walking. Sadly at the moment this does not seem to be the case. They are really trying their best but it is like we are just fighting the demon at the moment.

Brooklyn has mixed CP so although the treatment is good to keep him stretched, every time they try to straighten his body and weight bear, he just collapses from his weight. I was told last Friday that the outcome for him does not look good as we can’t fight the stiffness against the floppy side of him. Brooklyn is such a happy boy it just doesn’t seem fair.

He has had quite a few episodes of respiratory distress lately due to the change in the weather and will be going to hospital later today as his paradoxal movement of the vocal chords are making the oxygen intake extremely difficult. He is also running a temperature and has been unable to gain any proper sleep at the moment so we don’t really have a choice but to take him in, AGAIN! Sadly, with the amount of medication Brooklyn is on, if we are unable to keep him stable at home, we have to let him go. It is always so scary as Brooklyn is so unsociable when it comes to breathing and we end up being on tender hooks each and every time, as we always seem to receive bad news.

We have also just received in writing now that the stem cell treatment on Brooklyn’s brain cannot go ahead at the moment as Brooklyn is not strong enough to undergo a general anaesthetic and will not be able to wake. He also cannot travel to the clinic either as he would not be able to make the plane journey due to the change in the air pressure. We are all so sad as we don’t know what will happen next.

My little boy is my life and always will be. I hope everyone who reads this keeps a smile for him. Keep your post coming as it really has made a difference to know that people do care.

Update 20th April 2010

Today Brooklyn went to the CPPC in Luton and it was amazing. They are a specialist centre dedicated to Cerebral Palsy.

Brooklyn had the right hump while we were there and so having an assessment was not as easy as I hoped. When we got there they offered us a cup of tea which both Chris and I could have bitten their arm for as it is not often we get a cuppa made for us and actually get to drink it while it is still hot!

They then took Brooklyn into a treatment room which looked amazing. The physiotherapist looked so confident and it was obvious that she knew exactly what she was doing and was extremely good at her job! The Director and founder of the CPPC also stayed throughout the assessment and answered a multitude of questions. Agnes, the lovely Physiotherapist, first took Brooklyn over to the therapy table and tried to manipulate the muscles in his legs but he screamed so loudly and tears just started to pour.

The extent to which his legs scissor became apparent to me for the first time, as I have never seen him worked in this manner. Sitting was also tried and the fetal positioning with all his weight being on the backs of his calves. He has no safety movement or control in his arms either which is a problem. I wanted to cry when I realized just how bad things are – it was as if I could see how Brooklyn’s whole body would end up if action isn’t taken now.

Life is hard enough for Brooklyn but watching the pain and the tears and the severity of his handicap has broken my heart yet again.

They discovered some rounding in his spine and also pointed out that he has quadriplegic CP (which is all four limbs).

His involuntary movements are what cause him so many problems, and the fact that his brain has been damaged means that the movement that he does have is totally uncoordinated as the brain cannot differ between movements.

His hips are displaced and work almost like a ball bearing does but cannot hold the core of his body in place. We were told at the start of all this by our local doctors that if Brooklyn had not sat on his own by the age of 2 he would never sit or walk. So far this has all run true.

At the end of his assessment we all sat down and had a good chat about what Brooklyn would need if finances basically could make the stretch. They were very honest and said that Brooklyn would not manage just yet on their 5 day a week routine and it would be more beneficial to ease him into it. Ideally that means an hour a day at a cost of £41ph.

The way they spoke to me and the treatment style they have proposed for Brooklyn, has for the first time in his life opened a doorway to him having a chance at some kind of life where he can be the best that he can be, and maybe able to interact with other people on a different level that before was only ever a dream to us.

By retraining his brain and retraining his muscles to start from stage one, we may be able to get him to crawl. If this happens they are very confident of getting the core of his body to accept the seating position. All this takes time, money, expertise, and a lot of hard work from me too as I will have to set into place a whole new regimented routine with Brooklyn to help him stand a chance of achieving this.

Living away from my mum means that I do not have any help on my door step and the only person I can rely upon for help is Tammy (Brooklyn’s carer) but then she can only come for 4 hours a week. So we are in a huge pickle. It is going to be hard as Brooklyn’s dad is going to have to take a huge amount of time away from work to manage school runs and then he will be losing out on work as he cannot leave the girls as I will not be here.

This is all going to be very painful for Brooklyn as was seen today during the assessment and it is going to be very hard watching him undergo the intense work needed to give him a chance, but it is a chance! A chance we all thought would never be here.

Our local Trust is trying to set up a gift aid page for all who are able to, to donate towards the treatment for Brooklyn. Every single penny counts no matter how little. Having a child with so many special needs and a child that suffers daily from pain and not being able to help is heartbreaking. No-one realises just how exhausting and time consuming it is. Brooklyn’s sisters are affected and so is our whole world. I am totally run down and exhausted but I have to keep smiling and I have to keep going otherwise who will be here for my family.

People like to believe that because you are smiling everything is ok but never take the time to ask if this is actually the case. It saddens me as my son doesn’t deserve people to ‘keep away’ because he is disabled, or stare at him in his mobility chair. What has happened to him is not his fault and he is fighting to be here with his other problems as it is, so help him win his fight.

We cannot rely on physical help from anyone as this never seems to materialize so pleas send Brooklyn a smile and pray xxx

Update 19th April 2010

Hi everyone this is Brooklyn’s mum. I want to help others and I wanted to ask for some help. If I can get lots of people to view Brooklyn’s story (link below) and comment and give it a ‘thumbs up’ I may be able to get onto the home page and then I can really start to raise awareness for poorly children. I will be mentioning Post Pals in my future blogs but I have to wait until I am at that stage in his story.

https://blogs.gurgle.com/BlogDetails.aspx?blId=20929B0EADD17E49&did=1004&UserID=3177

Please DON’T send food to Adam as he is nil by mouth.

Story written 2011

Adam was born by emergency c-section on 2nd March 2007 after becoming distressed before labour. He was born blue and floppy, and required immediate resuscitation. Once revived Adam was still very unwell and was immediately sent from North Tyneside to Middlesborough James Cook Hospital. He spent 2 weeks in PICU, being treated for hypoglycaemia, pulmonary hypertension, seizures and lung dysfunction as he had aspirated meconium prior to birth.

Three weeks after birth, Adam suffered more seizures and became critically ill. He was admitted to Newcastle General Hospital, where he was discovered to have had 2 haemorrhages in his brain since birth. Adam regained consciousness after 7 days but continued to be very poorly, and remained in hospital for a further 10 weeks. He has since had two further bleeds in his brain.

Since discharge, Adam has been diagnosed with spastic quadriplegic cerebral palsy, affecting his right arm most severely and also making him unable to sit unaided, stand, crawl or walk. He is making slow but steady progress in learning how to make his body work the way he wants it to. He is unable to form words, but enjoys making quiet noises. Adam has bilateral partial lamellar cataracts, making it difficult to focus on moving objects. Adam has feeding difficulties and is unable to swallow without aspiration into his lungs. He often has chest infections and is regularly hospitalised for treatment. In January 2010 he had a gastrostomy fitted, and now receives all his nutrition via a feeding tube. Excessive stress and medication has meant Adam has developed stomach ulcers, which sometimes bleed. He also suffers from epilepsy, with severe tonic clonic seizures, leading to a trip to A&E and usually a stay in PICU.

Despite all his troubles, Adam is a happy, lively boy who makes friends everywhere he goes. His grins and giggles keep his stressed parents and his loving little sister smiling.

Update 7th April 2018

Adam had eye surgery in December and January to remove his many cataracts and hopefully increase the amount of light getting in. Surgery went well and he was allowed home quite quickly both times. It has taken a while,but we think his general vision has improved,although he will never see very well due to nerve damage. Adam is still on the waiting list for surgery or further treatment on his knees and ankles, and under observation for the straightness of his spine and hips. He still experiences a lot of pain and doesn’t sleep well. Nevertheless he keeps a smile on his face, enjoys days out, rugby matches and a constant supply of superhero films at the cinema. He had his 11th birthday in March, and received so many amazing cards and gifts. Thank you everyone!

Hannah is awaiting further treatment for her liver and stomach problems. She is under the weather most days but carries on regardless. She is continuing to fundraise for lots of charities with her project Hannah’s Helping Hand, and particularly enjoyed making Christmas decorations for Post Pals in December. This month she is promoting Autism awareness at school. Hannah was 9 on April 6th, and she too received so much lovely post. Thank you again!

Very sadly, Adam’s best friend recently passed away. It was very sudden and he is going to miss her very much. We are all heartbroken for her family. Hannah’s best friend is very seriously ill at the moment and so we are doing all we can to stay positive and have lots of fun.
We are so very grateful to everyone who sends post. The last few months haven’t been easy for A & H, and all that love in the post has been a great comfort.

We are looking forward to the Post Pals Chessington Trip (especially Hannah who is nuts about rollercoasters).
Thank you Post Pals for everything you do.

Update 15th October 2017

Adam is still waiting for leg, knee and eye surgery. He is also back on the waiting list for hip and spine consultants.
As the winter approaches we are keeping a close eye out for chest and ear infections . He remains his happy self most of the time.
Hannah has been diagnosed with liver disease and autism spectrum disorder. She is working hard to cope with and overcome her difficulties, and is continuing with her monthly charity work with Hannah’s Helping Hand. In November she will be fundraising for Post Pals.

Update 25th July 2017

In the last few months, Adam’s health has been going downhill as he seems to be in more pain than ever. The tightness of his knee/leg/ankle muscles is now too bad and medication isn’t helping.

We also learned recently that his eye sight has deteriorated significantly and his cataracts are now obscuring most of his central vision. Adam is relying more and more on sound and touch to make sense of the world. We are very grateful for all his audible post, as we need to keep him constantly supplied with new stories, and of course as he isn’t keen on sleep, it helps us through the long nights!

Due to all this, Adam will be having a number of surgeries in the coming months (waiting lists permitting) on his legs and eyes. Adam’s history of respiratory problems means the doctors don’t suggest these things lightly, but we hope that the stress, discomfort and hospital stays will reap great rewards for Adam in the longer term.

Despite everything, Adam keeps cheerful. He has been awarded a second swimming qualification at school and was recently the winner of a North Tyneside schools Star Award for his “Can Do” attitude and positivity. The highlight of his year however, was definitely meeting Mister Maker after his Whitley Bay show!

Hannah continues to be unwell. She has been diagnosed with a liver disorder (we don’t know what yet) and has been having lots of tests. She hates them, gets very stressed, and as a result her anxiety has gone through the roof.

She continues to pursue her charitable project Hannah’s Helping Hand (she has a page on FB), and recently celebrated the 2 year anniversary with a tea party for our local carers centre , the 31st good cause she has supported since June 2015. In July she overcame her fears and did a zip wire challenge for Calvert Trust, raising over £200.

In March, Hannah was honoured with a Points of Light award from the Prime Minister, for her outstanding voluntary work and contribution to society. Of course,  we are extremely proud and very very happy for her.

Thank you everyone who sends post. The terrible two have received some wonderful things, including, to mention but a few, amazing paper cuts (Hannah hugs her Olly Murs every day), Adam’s fantastic Doctor Who cross stitch, letters and postcards from all over the world, books, teddies and very special extra smiles and monthly project parcels.

Thank you everyone, from the bottom of our hearts.

Update 6th January 2017

Happy New Year to everyone from all of us!
Since our last update, Adam has been having more difficulty with his epilepsy, which is still difficult to control, and constant pain in his legs and arms. He is now seeing a new set of neurology/orthopaedic consultants to try to find an answer, hopefully without the need for surgery. Thankfully, his latest x-rays have come back ok, so we can put his spinal problems aside for now.

Adam continues to be brave and keep smiling, despite some let downs recently. He had another set of tests to see if he can return to taking food and drink orally, but we were disappointed. His swallow is still very unsafe so he will continue to be fed via his gastrostomy (feeding tube directly into his stomach). This is the most upsetting recent development, as Adam did once take food orally (he has been nil by mouth for over 6 years), and is really desperate to get back to eating chocolate lollipops, mashed potato and whippy ice cream. He will have more tests later this year, so we remain ever hopeful.

Hannah continues to make us proud. She is still unwell, with an as-yet undiagnosed illness, causing her a great deal of pain and sleeplessness. She is having lots of tests and scans, and despite being terrified of needles she is always brave.
Hannah has carried on with her charity project Hannah’s Helping Hand, which is now in its third year. In 2016 she helped 17 charities and good causes and raised over £1700 with her friends. We have lots of plans for 2017 including a sponsored run and walk, craft sales, baking and even possibly a zip wire if H gets the medical all clear!
In December, Hannah attended the Chronicle Champions Awards, as a shortlisted nominee in the Champion Fundraiser category. These are awards in the North East area for people who have made an outstanding contribution to their local community. Hannah was shortlisted alongside two adults, and, although she didn’t win, we all had an amazing night and Hannah got the moment in the spotlight she truly deserves.

We are very grateful to everyone who supports Adam and Hannah by sending them post. Christmas was amazing for them, with all their cards and gifts making them both feel brighter on their bad days, and certainly very loved. Another big thank you to all the people who fundraise for Post Pals. We were very lucky to be included in the Chessington Trip, and had an unforgettable experience.

We wish everyone a peaceful, happy and healthy 2017!

Update 6th June 2016

Thank you everyone for all the lovely post and emails Adam and Hannah have received this month. Adam is doing ok but is in a great deal of pain and still having seizures. He had one particularly bad incident where we thought he was having a stroke and was very poorly, but he bounced back as he tends to do and tries to stay strong.

Hannah is trying her best but is still struggling with ill health. She is constantly tired and fatigued in her limbs, and struggles to sleep at night and stay awake during the day. She has seen a consultant and is waiting for tests. Her Year 2 SATS were a little stressful, as she has difficulty concentrating and can’t cope with worry very well.  Despite this she is continuing with her project Hannah’s Helping Hand and enjoying updating her blog (hannahshelpinghand.wordpress.com) and being of help to the community.
We won’t be able to come to the Post Pals party but we wish everyone a wonderful time and a fantastic summer!

Update 12th January 2016

Adam  has had mixed health recently. Despite our hopes, his epilepsy is getting worse and it is becoming difficult to control. He seems to be in more pain and needing many more stretches and doses of painkillers  than ever before. He will be seeing various consultants in the next few months to try to make him better.On a positive note, we are managing to keep him out of hospital more, even when he is very under the weather. This is great because he often recovers much more quickly in the comfort of his own bed. Adam is trying hard, but finds day to day life very tiring , especially school. We keep him happy with endless Star Wars dvds and of course all his fantastic Post Pals post.

Hannah has been generally quite unwell for some time now, so we are waiting for her hospital appointment for tests. She keeps cheerful and is happy to devote all her energy to her charity project Hannah’s Helping Hand. Last year she helped 10 charities, and hopes to do even more this year.

Christmas was relaxed and mostly quiet and we all had a great time.

Adam and Hannah have received so much amazing post. We had to spread out opening them over many days of the Christmas period. Our heartfelt thanks go out to everyone who thought of our terrific twosome, and the people who email or message to keep in touch with how they are doing.

We send all our love to our friends at Post Pals and to everyone sending post to any of the Pals and siblings.

Update 13th September 2015

The summer has been ok for Adam, with fewer seizures and hospital trips, except for one scary day at school in July. We may (fingers crossed) be on the way to getting his epilepsy medication right, which will make a difference to Adam’s life.

Adam still struggles with pain in his knees and feet, but now it is also in his arms too. His muscles and tendons are just so tight that they constantly ache for him, plus the medication to ease them makes him sleepy and we have to fight to keep him awake some days!

As always though, Adam keeps a smile on his face and a bit of mischief twinkling in his eyes every day.

We had a lovely short break in Blackpool over the holidays. Hannah got to dance in the Tower Ballroom which she says was a highlight of her life. We all went to the top of the Tower, which Adam loved, and also went to the zoo.

Hannah has started year 2 at school and has been a little apprehensive. It’s a lot to take in but she is working hard and having fun.

Hannah has started a new project called Hannah’s Helping Hand. She is aiming to help at least one charity each month, so that she can make a difference and learn more about the world. So far, she has helped Marie Curie, the local food bank, a local community group called The 5p Bus, and Post Pals (of course). Post Pals is also the charity for December. This month she is doing a sponsored walk for the Alzheimer’s Society.

Thank you so much to everyone who sends post to Adam and Hannah. Every item really brightens up their days and ours. As Hannah puts it, you are ‘amazingly awesome!’

Update 4th April 2015

Adam has had his 8th birthday recently and received lots of lovely cards and gifts. He had a dinosaur themed party and was happy and healthy for the day!

Generally, not much has changed. Adam still struggles with his seizures, which disturb his sleep and upset him. He is also needing more pain relief for his legs, knees and ankles. He is still smiling though and trying his best. He is growing fast so already needs a new wheelchair etc. School is going ok, he is learning his alphabet and numbers, and simple reading.

Hannah is about to turn 6 at the beginning of April. She is growing up too fast! She is doing well at school, keeping cheerful and trying to help out more with Adam. She has chosen to learn all about Adam’s conditions so she can understand and do more for him. They remain the best of friends, they really do love each other very much.

Thank you, as always, to everyone who sends post to Adam and Hannah. Hannah is now responsible for reading letters to Adam, which they both enjoy.

Happy Easter everyone!

Update 3rd February 2015

Adam continues to keep smiling and tries hard every day. He is struggling with increased pain in his legs and still has a troublesome bowel. We are still trying to find a good balance of medication to control his seizures, but he is brave about it. He isn’t sleeping well, so we are listening to a lot of Paddington stories in the middle of the night.

Adam is doing well at school, especially in his swimming, which he loves. We are hoping to start introducing a little more solid food this year, as he is desperate to eat and not too happy watching other people enjoying their food. We have a few family treats lined up for the year to keep Adam and Hannah’s spirits up.

Hannah is working hard and enjoying school, and continues to be a loving, caring sister to Adam. We grow more and more proud of her every day.

Christmas was great, and very busy, and Adam stayed well for most of it. They loved their elf and reindeer letters and gifts.

The children have received so much lovely post and we want to say a massive thank you to everyone. Recently they were delighted by their special balloons sent by Post Pals. We had just that afternoon been in a car accident (everyone is fine apart from a little whiplash for me and damage to our brand new WAV) so they were brilliantly timed! Adam took his to school to share with his friends in the sensory area.

We think it is important that everyone who supports Post Pals knows how much of a difference their kindness makes. Not long after Adam joined, he was sent a Postman Pat cd, which he still listens to now (a lot) and is the one cd we always take to hospital because it is guaranteed to make him smile. He also received a fish card in his first week, which is on his bedroom door. He has a big “A” sent to him by a lovely friend which he keeps on his shelf and wants to hold everyday. Adam loves to look at the large collection of postcards he has amassed (his favourite is one of a donkey sent from Ireland). He also has some Makaton story books, and some wonderful Mr Men and Postman Pat books which were decorated to make them sensory books, which go around in his bag all the time. Hannah has a collage of her name and fairies on the wall by her bed, and of course her beloved baby Maria was a Post Pals gift too. And not forgetting Indie, our lovely dalmatian who has had many adventures with us. We have a little metal heart hanging from our bathroom mirror which makes me smile every time I see it, and there are so many other precious things which mean so much to Adam and Hannah, and to us. Thank you to everyone who sends post to our special two.

Happy New Year everyone. We hope 2015 will be your best year yet!

Update 2nd August 2014

Adam has been his usual happy and hard working self over the last few months. He is trying his best with his physio, although as he grows the tightness in his knees, ankles and toes, is getting worse and he is troubled by increasing pain. We are looking at options for stronger pain relief and hoping this won’t making him too sleepy. His posture is improving, as is his grip and extension of his right arm. He is spending more time in a standing frame, which is helping him with his shoulder and head control. All this effort is very tiring and he is usually exhausted when he gets home from school.

School continues to make Adam very happy. He is working hard at his communication and we are starting to chat using Makaton more. He is also using communication software on his iPad to make choices and greet people. He loves to be part of the conversation! It’s early days, but he’ll get there we hope. Adam is also getting started with a bit of reading and counting. He is very pleased with himself!

Recently, the biggest difficulty Adam faces on a daily basis is his epilepsy. It is becoming very difficult to keep his seizures under control so we are trying new combinations of medication in the hopes of finding the right one. As always, Adam tries his best to stay cheerful and makes us very proud.

Hannah recently finished her first year at school and is doing very well. She takes time out every day to talk, read or play with Adam, and they continue to be the best of friends (although Adam could possibly do without hearing Let It Go ten times a day).

Adam and Hannah receive so much lovely post and we are truly grateful. Hannah’s reading is good enough that she can now read Adam’s cards and letters to him. They are very cute together, opening their envelopes and getting excited. A massive thank you to you all for the kindness and love you show our brave two. Everything is appreciated and looked at over and over again.

Update 2nd February 2014

Happy New Year to everyone. We hope you had a lovely Christmas! Adam and Hannah enjoyed their Christmas very much (although Adam wasn’t too well) with lots of treats and so many wonderful Post Pals letters, cards and gifts.

There is mixed news about Adam recently. It is now clear that having the fundoplication surgery last year was one of the best decisions we ever made. He is keeping his feeds and meds down and putting on weight. It has been a pleasure buying him lots of new clothes in larger sizes and finally seeing him get a little bit of a tummy.

Adam has been in and out of hospital for short stays of one or two days, usually due to his epilepsy. He is having regular seizures which are quite frightening for him, and us. We are trying new combinations of medication to try to stabilise his condition, but it is a real balancing act between controlling seizures and not letting him get too drowsy (which is a side effect of most anti-epileptic drugs). He has recently been so badly affected that he is spending all day asleep. We will keep trying to find the answer! He is also struggling with increased pain in his limbs and continuing bowel problems.

However, Adam is a fighter and he keeps going whatever comes at him. He is trying very hard at school, with regular physio and speech therapy. He has started lessons in Rebound therapy (on the trampoline) which he loves, and he is a member of the after school Boccia club. Adam loves sport and seems to have a real talent for this one!

Adam now has an iPad and is learning to use communication software to give him the voice he so desperately wants. Adam has no spoken words so this, with practice and patience, will open up the world to him. He is finding the whole thing very exciting, although so far we can only manage yes/no answers, but it’s a start.

Hannah is now at first school and is doing well. She enjoys reading and writing the most. Adam and Hannah are the best of friends and Hannah is a great help to us in looking after her brother and cheering him up on his bad days. We are very proud of them. They really are our heroes and we would fall apart without their smiles.

We would like to say thank you, yet again, to all the kind people who send post to Adam and Hannah. At Christmas they were overwhelmed by the gifts and cards. Adam loved the reindeer letters and has so many new postcards. Thanks also to everyone who emails – Adam looks at them on his iPad and always smiles when he sees a message is for him. Adam and Hannah think of you all as their friends and everything they receive brings a smile to their faces.

Sending lots of love to you all.

Update 15th August 2013

Adam continues to do well after his surgery and is slowly starting to put on weight. He still has the urge to vomit, but because he can’t he is learning to cope and is getting used to it.

He has been busy at school, doing swimming, sports, trampolining etc and cookery. He can now make a cheese sandwich with a little help, which made me so happy I cried a little. Adam got a great first report from school. He is a cheerful, friendly, popular and hard working little lad, apparently!

He completed the Children’s Cancer Run in May with Dad, Hannah, Grandpa and Uncle Richard. The two children raised over £100 for this worthwhile cause. Some of our Post Pals friends were kind enough to sponsor us, so a massive thank you to them!

In September Adam is going to start an after-school Boccia class, which is very exciting, because he really enjoyed watching it during the Paralympics.

He has been having a quite a bit of trouble with seizures, minor and serious, short and prolonged, of all types, and we have had quite a lot of ambulance rides to A&E recently. The seizures have made him very tired and seem to affect his limbs quite badly, making him very stiff. Adam has been having extra physio daily to help with this and as always he is being very brave. His pain seems to be getting worse, so we will need to raise that with his consultant in September.

He has been missing his school activities and friends so we have been trying to stay busy and get out and about over the holidays. We’ve been to the cinema, visited friends, explored the coast and countryside and even met a dinosaur!

Hannah starts school in September and she is very excited. She “graduated” from nursery in July, with a ceremony and a party. She’ll miss her friends at nursery but she is definitely ready for school now and eager to start learning. As usual she has been very loving with Adam, looking after him with gentle affection when he is having a bad day.

Thank you so much to everyone who has sent the little ones post in the last few months, I am pretty rubbish at remembering to post thank you notes, but please be sure your lovely letters and parcels do make a big difference to our two brave children. Adam now has over 100 postcards from Britain and around the world. Adam’s health is very up and down at the moment, with bad days popping up and surprising us, so every envelope holds a treat to make the days a little easier.

Sending lots of love and best wishes to all our Post Pals friends, the Pals and their families.

Update 8th May 2013

Adam had his fundoplication surgery on 18th April and it all seems to have gone well. He was admitted 3 days earlier to be on overnight ventilation, to prepare him for the anaesthetic as his breathing hasn’t been so good recently. We were told to prepare for 2-3 hours in theatre and in all we waited for 5 hours which was a bit nerve wracking. Once he was in theatre, the surgeons noticed that he needed another procedure as well as the fundo, so they decided to do that at the same time. This meant Adam had a lot of sore wounds afterwards (9 keyhole surgery points, two in a VERY delicate place!) and was on a lot of painkillers for a week or so. Adam coped extremely well with the surgery. The doctors had an intensive care bed and a blood transfusion ready for him to recover and were expecting to have him ventilated for a few days, but amazingly he didn’t need any of it. The next day he was sleepy but cheerful, and well enough for visitors and to play with Hannah a little. He was discharged after 5 days (it would have been earlier but he had to have some fasting tests for a couple of days), which was great as we’d been told to expect up to 3 weeks in hospital and we were home in 10 days!

He had a further week off school, went back for one week part time and is now back full time. It’s like he’d never been away! The surgery seems to have worked. Adam is now no longer able to vomit, which means he keeps his milk feeds down and hopefully he will start to put on some weight and gain some strength. It has caused some problems as now he can’t cough hard enough to dislodge anything in his throat, but he is learning to cope with it. He has also been able to come off two of his medicines which is great for him as we always thought they didn’t suit his tummy. So far, we are pleased with the results of his surgery. It wasn’t comfortable for him and we are so very proud of him for being brave and putting up with the pain and worry with a big smile on his face!

Hannah was a very good girl while Adam was in hospital, going to pre-school in the morning and visiting him in the afternoon. She played with him, drew him pictures and told him stories. She is doing really well at school, enjoying her dancing lessons and learning to read. She can read her name, and other key words. We look at her Post Pals post together, which she is finding even more exciting now she can read some of it herself!

Thank you to everyone who has sent post, letters, cards and gifts to Adam and Hannah in the last month. Adam put lots of his post up on the wall of his hospital room, which was admired by the many doctors, nurses and visitors he had.

The four of us send all our love to everyone at Post Pals, volunteers, Pals and their families.

Update 3rd April 2013

We have had a relatively stable last few months, Adam’s health hasn’t been too bad and he has been doing well at school. He has had a couple of nasty chest infections which make him very tired and he has missed some school this term, which he wasn’t happy about. His breathing difficulties seem to be getting worse and we are now having to regularly test for dips in his blood sugar as this might be causing his new seizures.

Adam will be admitted to the RVI Newcastle on Monday 15th April to prepare for his fundoplication surgery. He is going to be put on a ventilator overnight for a few days before to help his poorly lungs cope with the anaesthetic, so the actual op won’t be until Thursday 18th. While he is in the hospital he will also be having some tests to do with his blood sugar. We are hoping he should only be in for about 10 days altogether, but this depends on how well he recovers from the procedure. Whatever happens he is going to miss quite a bit of school. We have told Adam what will be happening and he is being brave but is obviously worried and unhappy about it. We are going to arrange lots of fun activities and visitors for him, and hope we can keep him smiling.

Adam had his 6th birthday on 2nd March and he was well! We had a family party, dressed up as pirates, danced and played games and he was very happy. Hannah is 4 on April 6th and will be having a Teddy Bear’s Picnic to celebrate.

Hannah is doing well and enjoying pre school. She had a nasty accident in March, when she fell and hit her head off a wall, losing a front tooth and splitting her top lip very badly. Hannah had some minor surgery the next day and had a week off school to recover. She was a very good girl about it and now talks about it like it was an adventure.

A very big thank you to everyone who has sent post to Adam and Hannah in the last couple of months, especially for Adam’s birthday and Easter. We can see how much care and effort is put into everything and we are very grateful. We send lots of love to everyone at Post Pals.

Update 4th January 2013

Adam has been mostly well in December and had a very happy Christmas. The rest of the family had a nasty bout of norovirus but Adam seems to have avoided it. He has had quite serious stomach and bowel problems, and seeing him in such severe pain is heartbreaking. Adam tries so hard to keep smiling and has been very brave. Aside from this he has been happy and contented, although we think he’ll be very pleased to go back to his lovely school next week. We were stunned when we realised that Adam had done a whole term without a single sick day, something he has never managed before in his life. Long may this continue!

Adam and Mum, plus Uncle Richard, took part in Adam’s school fundraising Pudding Run on Whitley Bay seafront on Boxing Day morning. It was cold and we only managed about half of the course (his wheelchair is heavy!). Adam enjoyed himself so much and laughed all the way round, getting lots of cheers as we ran.

As we haven’t heard from the hospital, it looks like Adam won’t be having his surgery in January so we’ll have to chase that up, again.

Christmas was lovely. Adam and Hannah were in good spirits, and enjoyed their gifts and being surrounded by loving family and friends. They had lots of time to play with their 4 month-old cousin George who they adore.

The children received so many lovely cards and gifts this Christmas and we are very grateful to you. Their cards covered two doors in our house and Hannah kept asking to look at them and to hear the names of the senders again. Thank you everyone for your kindness.

We don’t know what 2013 has in store for the family, as these days Adam’s condition is very unpredictable. We will carry on giving Adam and Hannah the best possible life and deal with the more difficult days as and when they happen. Post Pals has given our lovely two so many smiles, giggles and surprises, often when they were desperately needed, and we cannot thank you all enough. We wish you all a very happy and healthy 2013!

Update 7th December 2012

Adam has been mostly well and happy recently. He has had some chest and bowel problems but seems to cope a little better than he used to. He’s still in a lot of pain but is slowly learning how to tell us so we can help him.

School is going well. Adam won a prize at Awards Evening for his improvement and hard work. He beamed from ear to ear as he collected his certificate, and loved the applause. Adam is completely settled at school now. He has lots of friends and the staff seem very fond of him. He goes swimming every week, loves using the plasma screens, drawing, making music and playing in the sensory area. He has been busy rehearsing for his Carol Service, including some Makaton signing of some carols.

We are waiting for confirmation that Adam will be in the RVI Newcastle for his fundoplication surgery in January. He’s going to be in for about 2 weeks, which will be difficult for him as he’ll miss a lot of school. It’s possible he’ll have to go into PICU beforehand to ensure that he is stable for the procedure. We’re not looking forward to seeing our little man in so much pain post-op but we hope the results will help him to get on with his life without the constant vomiting.

Hannah is happy at nursery. She was Frosty and a donkey in the Nativity and is very excited for Christmas.

A huge thank you to everyone who sends the children their lovely post. We wish you all a very Merry Christmas and a happy, healthier 2013.

Update 30th September 2012

Adam’s health has been up and down as usual in the last few months. His seizures have been quite frequent and knock him out for days, but he copes well and needs to be admitted to hospital less often than in the past. Adam is still suffering horrible, painful bowel problems and we’ve been unable to help him with the vomiting. We’re still waiting for a date for his fundoplication surgery, after which he’ll need to be in hospital for a week or more. We need a date soon or else it will get dangerously close to Christmas!

A year late, Adam has finally started school! From his first day he loved it and he is well looked after and learning so much. He enjoys assembly and swimming. We have seen such a change in him. He is noisy now! Shouts all the time and trying so hard to form words. His signing is improving, he is more alert and doing really well with the communication technology. School really suits our Adam. He still misses his nursery friends but he has made some lovely new ones too. The school is excellent (which was why we fought so hard to get him in!) and we’re all delighted. Hannah has started pre-school, is settling in quite well although she is a little nervous, and is even doing extra dance and French classes!

Some of our Summer plans didn’t work out because of Adam’s ill health. We couldn’t use our tickets for the Paralympics which was very disappointing for all of us, but Adam just wasn’t up to the travel. We watched LOTS on the tv though. Adam is now a massive fan of David Weir and Johnnie Peacock, and has also decided he wants to learn the javelin and horse riding. Hannah changed her mind every day about her favourite Olympic and Paralympic sports, but definitely wants to be gymnast and a triple jumper. We enjoyed lots of Jubilee events too. We had a party for friends and family, Adam loved the River Pageant on tv and we even got to see the Queen in person (in the wind and rain!) at the opening of Tyne Tunnel 2. The kids both loved all the exciting events of the Summer, and we will have lots of happy memories.

Adam and Hannah love getting all their fantastic post. Massive thank yous to everyone, including Jenny, Jen and Emma who write regularly, everyone who sends Adam postcards from all over the world, and the several Becky’s (Hannah asks if her post is from one of her Beckys). We promise to get better at sending out thank yous!

A couple of final things – a big thank you to Kate D for everything she has done for Adam and Hannah. We hope you get your well deserved rest and relaxation! And congratulations to everyone at Post Pals on the fantastic new website, which we know has taken so much hard work. We love it.

Our love and thoughts are with all the Pals and their families everyday.

Update 1st July 2012

What a busy few months! We moved house in April to be closer to family, and we’re still only half unpacked. Adam now has a large downstairs bedroom which he loves, and we have a sofa in it so there’s a bit of comfort for Mum or Dad when we’re caring for him at night. Hannah’s room has mirrored wardrobe doors, so she’s happy too.

Adam had another week long hospital stay at the end of March, with seizures, pneumonia, bowel issues and chicken pox! Despite our best efforts, Hannah caught it too and was very poorly for a week or so, although she was very brave about it. This coincided with her 3rd birthday, but she managed to have a great time anyway and received some lovely cards and gifts from Post Pals people. Seizures have continued to be a problem, with two ambulance trips to A&E in two days in May. His vomiting has worsened a little, so looks like his fundoplication surgery is unavoidable. We had hoped for this during the summer, but looks like he will have to miss time at school for it.

We have had great difficulty getting Adam into school. He needs a special needs placement and the local authority told us there were “no places” so we  would have to send him to Durham or Northumberland. Two daily hour long trips in a taxi with a stranger would be impossible for a 5 year old boy with serious medical issues so we said no. After a lot of fighting, Adam will now start at a closer school in September, a year after he should have been starting. At the moment they are planning to put him in a year behind his age group, but as we’re not happy about that, watch this space. It seems a shame that the most vulnerable in society have even harder battles to fight to get what they need, just to achieve the same as the “normal” children. We’ll keep fighting though. We hope Hannah will be able to attend the nursery class of the mainstream school which runs along side it.

As Adam has been at home with Mum and Hannah (we have no respite care in place), we’ve been trying to get about as much as possible and see the world. Trips shopping, to the cinema, theatre, parks and castles have excited the kids. Currently, Adam is devoted to all things Tintin (especially Snowy the dog) and Hannah is enjoying baking cakes and then eating them. We will be gong to some Paralympic events in London in August/September which will be great.

Adam and Hannah continue to receive lots of fantastic post, which makes them feel very special. Some parcels are kept for difficult days, and letters are read to them before bed. Photos of scary spiders (scary to Mum, not to the kids) are put back in the envelope very quickly. Adam has had some amazing postcards from all over the world. We mark the countries off on  a map, look at where they are on his globe, and put the cards in a special album.

Paul and I are very grateful to everyone who sends the children post, emails or contacts us on Facebook. I’m making some great new friends via Facebook and Twitter. We’ve been looking at photos from the party and we’re so pleased it went well. We attended via the Facebook Unofficial Virtual Party which was a lovely bit of fun.

We send our love and best wishes to everyone at Post Pals, especially all the Pals and siblings, and we hope the summer is sunny and happy for you all.

Update 13th March 2012

Life has been all ups and downs for the last month. Adam had a communication assessment and did well, impressing everyone with his ability to use touch screen technology and tell us exactly what he wants. We’re hoping to arrange a loan of some communication aids which can be attached to his wheelchair. It’s very exciting for him and us because we’re certain that Adam has a lot to say!

Adam’s health hasn’t been so great.  He has had a couple of seizures, but thankfully minor ones. Unfortunately, he then developed pneumonia and vomiting virus, and this meant that for the second year in a row, Adam had to spend his birthday in hospital. We made the best of it though, with help from our wonderful friends and family. Adam shares his birthday with me (mum) so we had two cakes and roomful of decorations, cards and presents. Adam received dozens of cards and gifts from Post Pals people and we were overwhelmed by your kindness, yet again. Despite being confined to a hospital ward we had a lovely day.

Adam also had a sleep study last month, but he didn’t sleep much. He was quite stressed about the whole thing and he ended up vomiting throughout the night, had a choking episode and a small seizure. Although the study was limited, it does look like Adam has periods in the night when he stops breathing so we’ll be seeing the respiratory team in April.

Hannah will be three soon. She has asked for a little party with Adam and we are happy to oblige. It may turn out to be a very big party!

Thank you for all Adam and Hannah’s post. Any art/craft gifts are being used to make post for other Pals, so after we’ve had fun making, we can pass those smiles on. Adam’s Nursery class have been drawing pictures to send as well.

The four of us send all our love and thanks to you all.

Update 14th February 2012

Adam has had a pretty good month in January. We seem to have managed to control his vomiting and this has improved his health generally. His chest is still troublesome and he is having difficulties with his bowel which is very painful for him. He had his first seizure since May last year, unfortunately quite a serious one, but recovered quickly and didn’t have to stay in hospital overnight.

Adam is making more and more noise, shouting when he’s happy and crying when he is in pain. This might not sound so great but it’s wonderful that he is finally starting to express himself, instead of suffering, literally in silence. He has a sleep study on 16th February which should help us to deal with his breathing and oxygen problems. We should have results by March or April.

Adam is excited for his 5th birthday in a few weeks, and about moving house sometime in March, to be closer to school and family.

Hannah will be starting pre school after Easter. She’s getting to be such a big girl! I would have to say that the family has been happier and healthier recently, and long may it continue!

Thank you to everyone who sends Adam and Hannah post (and Paul and me too!). They opened their Valentines this morning. Adam went all shy and cute, and Hannah declared “Look how many people love me!” Paul and I are so grateful to all of you. Our love and thoughts are with all the Pals, families and volunteers.

Update 20th January 2012

It’s been a while since our last update and so much has been happening. Adam has had his ups and downs, chest infections and now a troublesome bowel. He keeps smiling but seems to be understanding more, and these days we can see the worry every time he goes near a hospital.

During the summer, we were in and out of various hospitals for short stays as Adam was having real problems with his chest and breathing, causing worrying drops in his oxygen levels. Generally Adam tried to stay cheerful.

We had a great family holiday in the Lake District, during which Adam was mostly well, and we got to see lots of boats and steam trains, visited a great zoo and played in a tent in the garden.

Adam had a couple of longer hospital stays in October and December and missed several nursery outings and his starring role as a reindeer in the Christmas play, which was very sad. He also had some surgery to change his gastrostomy tube to a button, plus some investigations of his throat. As a result of this, he has changed to a new milk feed, which has no undigested milk protein. In the month he has been on this, his vomiting has reduced dramatically and we’re very pleased. It makes day to day life for him a little easier and more comfortable. He is trying this milk for another couple of months before we decide if he will need a fundoplication, which we’re hoping to avoid. He remains nil by mouth, but does have flavoured lip balms to give him sweet tastes to enjoy.

Adam now has his new wheelchair, which is much more comfortable and means he’s happier getting out and about. We’re trying to involve Adam and Hannah in as many memorable experiences as possible, so we followed the Rugby World Cup and filled in a wall chart, he’s had several visits to the cinema, and we have got tickets to some events of the Paralympics in August which we hope they will both find fun and inspiring. When in the RVI in December he got to meet several Newcastle United footballers, and even better, a whole squad of the Newcastle Falcons rugby team. This made his year! Christmas was very happy, with Adam well and very, very excited!

So far 2012 has been better, Adam has been stable and happy and we’re making plans for holidays and moving house soon, as well as Adam starting school in April. Adam is our sunshine, and his determination and happiness in adversity is the generator that keeps our family going.

Hannah is doing very well – still a talkative little thing, always asking questions, singing and dancing. She finds it difficult to understand Adam’s condition, but tries her best to look after him and plays nicely with him. They’re putting together quite a cheeky little double act! A few weeks ago, she offered to put on Adam’s shoes and walk for him to help him. Hannah struggles when Adam is poorly, especially during long hospital stays when she has to stay with her grandparents. She keeps going, and is there to cuddle us when we really need it. Hannah is our sweetheart, and makes us smile even at the saddest of times.

We have been keeping up with the updates of other Pals and been pleased to read of some developments and saddened by others. We are always thinking of the Pals and the people who love them. We have some insight into how they might be feeling and they inspire us to try harder and keep going whatever the days bring.

Our thanks to everyone who sends post to our little ones. They enjoy (and keep) every single thing. Quite often, the post they receive can change a difficult day into a happy one.

We send our love to all the Pals, families, friends and volunteers at Post Pals and wish you a happier and healthier 2012.

Update 8th August 2011

July and August (so far) have been better for Adam. He is now fully recovered from his surgery and has been discharged, for now, from the respiratory clinic at the RVI. The vomiting, chest infections and terrible pain in his legs continue, but as he gets older he seems more able to cope. Adam has never been one to cry very much, so when he does we know something is definitely wrong. His seizures have settled down a little too, so his recent change of medication may be working after all. He’s still getting chest infections every fortnight or so, and they tire him out, but he continues to laugh, giggle, smile and try his hardest to have fun, however poorly he’s feeling. As I type, he’s sitting on the sofa wearing splints and gaiters, listening to a story cd and laughing hysterically!

The reintroduction of food and drink had to be delayed, which disappointed us all, but Adam was just too poorly to cope at that time. The first session has been rescheduled for this week, so hopefully it will go well.

Adam can now say three words, with a lot of effort and concentration – car, yes and more. He uses the last one a lot!

Adam is growing up fast and his Dad and I were very proud to attend his pre school “Graduation” on Friday. They did a little play (which Adam slept through sitting in his wheelchair, but then he was playing a tree so it was a very convincing performance!) and then put on gowns and mortar boards and received certificates from their key workers. Adam’s smile just beamed all the way through the ceremony and he was very pleased with himself. Adam is very popular at nursery and got a big round of applause when it was his turn. Adam won’t be moving on to school until summer term next year (as the council “can’t find” him a special needs school place but won’t send him to our choice in a different county), but a lot of his friends are now leaving. He’ll miss them a lot, as he is very happy at nursery and gets lots of love and friendship from the other children.

Hannah continues to do well, talking ten to the dozen all the time and singing to Adam from her bedroom to his.

We’re enjoying the summer and Adam is managing some time outside, either in his little gazebo, or sitting in his special swing, watching the world go by. The whole family (including grandparents and aunts and uncles) are going on holiday to the Lake District at the end of August, which we will all enjoy. Generally, Adam seems happy and contented, and determined, which is all we could ask for.

Thank you, as always, to EVERYONE who so kindly sends Adam and Hannah cards, letters and gifts. They are both constantly delighted by their post, as are Paul and I. Hannah is now asking for letters to be read to her as bedtime stories!

We send love, smiles and best wishes to all Pals and their families, volunteers and everyone at Post Pals. Have a lovely summer!

Update 11th July 2011

Adam had his surgery on 16th May and was very brave. It all seemed to go well as Adam didn’t have any bleeding problems and we were lucky enough to be discharged the next day. It took Adam a few weeks to recover as it was very painful for him. He was a on a lot of painkillers which made him drowsy and uncomfortable. The second week of recovery coincided with a long awaited family holiday to the west coast of Scotland (the week of the gales and torrential rain!), and it was good to get away. Adam and Hannah really enjoyed themselves, especially spending time with their friend Alfie (and Mum & Dad), and Paul and I feel we got a few days to relax for the first time in a long time.

Although the procedure went well, it doesn’t look like it has been as effective as we hoped it might be. Adam’s breathing has improved, but his reflux is still very bad and he continues to be kept awake at night by it. He currently has another nasty chest infection so the doctors are now looking at putting him on a long term course of antibiotics to help him fight infections. The next step is probably going to be further investigations of the walls of his throat and a fundoplication, to help control his constant vomiting.

There is good news too! In preparation for a videofluoroscopy in September, (to see if he is still aspirating into his lungs when he swallows), Adam is going to be weaned back onto food and drink. He has been nil by mouth for a long time now, and we’re quite nervous about this, but it will be amazing to be able to give him the food he loves again. It starts with water and weak juice, but will move onto pureed food and then some solids. As a baby, he loved pureed Brussels sprouts and cheesy mashed potato, so I’m looking forward to getting the food processor out again. It’ll be a slow process, and he will remain reliant on the gastrostomy tube for the majority of his nutrition for quite some time, but it’s a start.

On 4th July, we heard Adam’s first word! It was late at night and he just wouldn’t go to sleep. He’d been babbling away to himself in bed for ages and his Dad went up to check on him. Adam was asked if he was being rambunctious (one of his favourite funny words – Adam LOVES funny words), and out of the blue, he said yes! We are so happy and proud, and he is very pleased with himself. He is attempting other words now, with Hannah helping him.

In the last few months, Adam has mostly preferred to stay indoors at home with his comforts. He loves getting his post, listening to his letters and looking at his gifts and cards. He took part in the Children’s Cancer Run at Gosforth Park Racecourse on 8th May, pushed in his wheelchair round the bumpy course by his beloved Grandpa. He’s doing well at nursery, helped by his brilliant one-to-one support Coral, and growing up so fast we can hardly believe it. We had a Royal Wedding street party too, and Adam loved being King of the street for the day.

Hannah has recently started to do one day each week at the same nursery as Adam, which she loves. They see each other from time to time during the day, without Mummy getting in the way! She is doing really well with her talking, ABC and numbers, and is thriving at the moment. Hannah is totally devoted to her brother (and vice versa) and has told me she is Adam’s special nurse sister. We’re very proud of how loving they are to each other.

Thank you so much to everyone who sends Adam and Hannah letters, cards and gifts. Your kindness continues to make a big difference to our lives, often on very difficult days. Paul and I have booked to attend the Post Pals Charity Ball in October, and hope to meet some of you then.

Our love to all the Pals, siblings and families, and everyone at Post Pals.

Update 16th May 2011

Adam has been very brave but was a little upset this morning before his surgery. He has been recovering from the painful surgery in hospital this afternoon. We’d kept some Post Pals post aside and he opened some and inside was a smiley face balloon. This simple, thoughtful gesture, made a tired and poorly 4 year old giggle. He has fallen asleep tonight holding onto it so tightly. There was no sender, so to whoever sent this little gift, our heartfelt thanks. You really made his day bearable. Post Pals makes these wonderful moments happen.

Update 11th May 2011

Adam has had an up and down couple of months. It was his 4th birthday on March 2nd and he took a cake and balloons into nursery for his friends. Unfortunately, he was taken ill halfway through the morning and had to be rushed to A&E (thankfully just next door). Adam spent the afternoon of his big day in the Children’s Unit at Wansbeck hospital under observation. The opinion is that Adam had a prolonged complex partial seizure, which caused him to lose consciousness for a short time. He was cheered up when his Dad brought a stack of his Post Pals birthday cards and parcels to open in the unit.

Our plans for the day were only postponed until the following Saturday when we went out to the shops to spend his birthday money (Postman Pat toys were chosen) and have some fun at the soft play.

March and April have seen a total of 5 trips to A&E and 3 stays in various North East hospitals. This has mainly been due to seizures, but that tonsil problem has been back and caused him a lot of breathing difficulties. Adam is on some new medication that hopefully will settle down his seizures and let him concentrate on happier things.

We’ve been busy, usually having 3 appointments a week for all sorts of different treatments. He’s being very brave, but as he gets older he understands more and is becoming increasingly unhappy with trips out, as he always seems to think he’s going to hospital. His lovely post is helping though. We save things for days we know he’ll find difficult, to keep that gorgeous smile on his face!

Adam is due to be admitted to the Freeman on 16th May for surgery (he’s having his tonsils and adenoids out) and investigations. Usually this would be relatively straight forward, but because of Adam’s blood abnormalities it’s going to be a tense time. We’re hoping so much that this surgery will help him to overcome his breathing problems, maybe his terrible reflux which makes him sick several times a day, and even allow him to start talking to us. I can’t express how wonderful it would be to hear our little boy say something (anything!) to us in his own voice! Please send positive thoughts his way on 16th May.

Adam’s little sister, Hannah, had her 2nd birthday on 6th April. She’s a cheeky, silly, loving little girl who adores her brother and looks after him all day long. She is having trouble coping with the separation from me and Adam when he is in hospital but tries her best and is always there with a smile, cuddle and a kiss for Mummy and Daddy when we most need it. Hannah received some lovely Post Pals cards for her birthday – she proudly declared to us that she had lots of letters from all the Princes and Princesses!

Thank you to EVERYONE who has sent post to Adam and Hannah in the last couple of months. You really are making a difference to the lives of two brave little ones. Paul and I are so grateful to you all. It’s been a very difficult time recently but your kindness and generosity has helped us through it.

We send our love to all the Pals, siblings, families and everyone at Post Pals.

Update 1st March 2011

It’s been a mixed month for Adam. He has made good progress with his speech and language exercises, using switches and eye pointing more and more, but also attempting a little Makaton to communicate (he knows the sign for chcolate already!). The use of his right hand, which only 6 months ago was virtually zero, has reached a level now where he can grasp things and move them about. We took delivery of his new powered bed this month, which is helping him to sleep more upright and so means less pain and vomiting in the night. He also likes to take little rides on it in the mornings. We’ve put some of his Post Pals pictures and cards on the wall by his bed so he can see and reach for them. Adam doesn’t sleep particularly well, so he is very glad of the distraction.

Adam’s ophthalmologists told us his sight has not deteriorated as they thought it might, so they are going to put off his surgery for at least a year (we were expecting it sometime in 2011), and possibly (fingers crossed) he won’t need it at all as he seems to cope well despite his cataracts.

We’re still waiting for a date from ENT at the Freeman in Newcastle. Adam saw the top surgeon a couple of weeks ago and he seemed to think Adam was haemophiliac, which was the first we’d heard about it! Hopefully, we’ve managed to sort this out and once Adam has the thumbs up from the haematologists about his platelet count, we’ll get a date. The surgery has its risks, as Adam has had clotting problems in the past, but they’re going to be on hand for a transfusion if necessary. We’re just praying for a straight forward procedure and a short stay in the ward afterwards, as Adam is getting more nervous and unhappy in hospitals these days.

Generally, Adam has been his happy, giggly self, but those nasty chest infections (and eye infections, and ear infections) keep on coming and the antibiotics just get stronger and stronger. He didn’t miss any nursery days this month though, for the first month ever.

It’s difficult for us to believe but our lovely little man is going to be 4 this month. He’s packed so much into his short little life, but it still feels like last week that he was born! We’re very proud of our beautiful boy, who perseveres despite all the pain and discomfort, the doctors and physios messing him about and the frustrations of having to rely on us to push his wheelchair when he wants to be running around with his sister and his friends. Adam is very excited about his birthday and we’re going to make it special for him.

Thank you to everyone who has sent Adam and Hannah post in the last month. Adam takes his favourite things into nursery to show his friends and is very pleased with himself. Thanks for the past couple of months to (and this is just some as I’m doing it from memory) – Dominic & Gethin, Sally for the lovely angel, Libby, MJ, Salome, the Hutchinsons, Ann, Ali & Alex, Christine in Australia (Hannah says Kangaroo all day long now, bouncing round the room), Tracy, Elaine & family, Sarah G, Jenny, Emma, and to William for the lovely surprise letter. If I’ve missed you out, my apologies, but be sure your post has made all of us smile. Thanks also to Dottie for the lovely letters. We log into the blog now so Adam can practice his computer skills. Finally, to Adam’s Valentines – you made him all shy and giggly – and we were so happy to see that. Adam and Hannah have enjoyed sending cards and letters to other Pals, and we send all of them and their families our love.

Update 28th January 2011

Adam has had a better few months, with some good news and finally some future plans.

In November he was Page boy at his Auntie and Uncle’s wedding and had a wonderful time, smiling and laughing all day. Since then he had yet another chest infection, and this time he was prescribed some much stronger antibiotics which made him tired and nauseous. They did the trick though and we were very pleased that he was well for Christmas, for the first time in his life.

Adam and Hannah had a great Christmas and New Year, were treated over and over again and met Father Christmas three times! After Christmas the excitement took its toll a little and Adam has been under the weather again, but he has avoided hospital and is on the mend now, but back on those same strong antibiotics. Adam seems to have had quite a growing spree in December too, so he is looking a lot more grown up these days. He continues to progress well with his speech and language therapy, and we feel he is getting closer to saying his first word (probably going to be Pat, as in Postman Pat), which would be just brilliant. The strength in his limbs seems to be improving too, but with that comes more muscle spasms and more painful nights.

One piece of good news is that Adam has been allowed to go back to having small tasters of food a couple of times a day – just fruit purees and tiny morsels of chocolate on his lips but this has made him immensely happy, and us too. We are now waiting for a date for Adam to have surgery to remove his tonsils and adenoids, which the surgeon tells us could significantly improve his breathing and reflux. He will be admitted, all being well, sometime in March (we had a date of Feb 3rd but it was cancelled) and they will investigate his larynx at the same time as it is possible he has an obstruction. If this goes well, we will be able to go ahead with a possible fundoplication, more investigations of his stomach and lungs, and also a new videofloroscopy with a view to reintroducing solid food.

We are extremely grateful to everyone who sent Adam and Hannah post in the last couple of months. Adam kept his Christmas presents until Christmas Eve, and was delighted with every single one. Paul and I continue to be so touched by your kind thoughts and all the love and smiles you send to our little man. The four of us send lots of love and thanks to everyone (and there were a lot of you) who sent something, and we hope to send out thank yous as soon as we can (sorry for the delay!). Adam and Hannah have enjoyed choosing gifts and cards for other Pals and siblings too.

Our thoughts and love are with every one of the Pals and their families, every day.

Update 10th January 2011

Hi everyone I just wanted to wish you all a happy 2011.

Adam and his little sister had a great Christmas, although he has been poorly again since. We are relieved that he has avoided hospital this time.

Thanks to everyone who sent Christmas post, which really cheered us all up.

Our thoughts are with all the Pals and we send our love.

Update 7th November 2010

Throughout October, Adam has continued to recover steadily from his recent illness. He is still very tired and nervous of going out (we have to explain to him very clearly that he is NOT going back to hospital today). He has acquired a nasty and persistent ear infection because he spends so much time lying on one side, so that has been uncomfortable for him, but generally he has been trying hard, happy and contented.

We have been getting increasingly frustrated by cancelled and rearranged appointments, which has meant that the surgery and investigations we were expecting him to have mid-October (giving him lots of recovery time before Christmas) have now been put off indefinitely for no real reason, so it looks like it’s going to be 2011 now. We’re also still waiting for someone to look more closely at his seizures. Our priority right now is to avoid him coming down with anything “minor” like a chest infection so he can be 100% for his duties as Chief Page boy at his Auntie Barbara’s wedding in a couple of weeks.

Thanks to Post Pals as Adam and Hannah have now adopted one of Dottie the Dalmatian’s litter mates, and called him Indiana (Indy for short) as suggested by their Dad. He has been on several family days out already and is a much loved new friend. Adam and Hannah have also enjoyed choosing and sending out post to other Pals.

A big thank you to anyone who has sent Adam and Hannah post this month. He was the centre of attention at the nursery Halloween party thanks to the lovely treats from Carol, Kate D and Post Pals. Hannah enjoyed carrying the pumpkin lantern round the Metrocentre last week and got lots of smiles. We were delighted to receive a lovely postcard from Heidi in Netherlands. Susan very kindly sent Adam some Toy Story things and Hannah a great book, which they loved. Marti sent some lovely books with cds which have been helping Adam to get through the sleepless nights happily (and us to relax!). Sarah G continues to send her wonderful letters which Adam listens to with great interest, and the fabulous pig card from Jazz is also very popular. A huge thank you as well to Donna Bedford who sent a lovely bracelet for Adam, even checking to see what his favourite colour was, and a Hello Kitty keyring for Hannah. Thanks to Jenny for her letter – we would love to reply but you didn’t put an address.

If I’ve missed anyone out I’m really sorry. We are starting to send thank you’s to those who put an address. Paul and I are so grateful to everyone who takes the time and effort to contact Adam. Your generosity is just amazing, and we want you to know that you make such a difference to Adam’s life, giving him so many smiles, and to ours. We send all our love and best wishes to all the Pals, their siblings, Mums and Dads, and to everyone involved in Post Pals in any way.

Update 1st October 2010

Adam spent late August and September in PICU and Ward 1 at the Royal Victoria Infirmary, Newcastle, after being taken suddenly and very seriously ill on 22nd August. His diagnosis was Toxic Shock Syndrome, with pneumonia and tonsillitis to complicate things.

After a few anxious days, we were told he would pull through, and although he was ventilated for a total of 10 days, made a characteristically quick recovery. He is now home, and awaiting appointments for follow ups from ENT and gastro surgeons, who think they can help with his breathing problems (the ENT doctor called his tonsils “too juicy”) and maybe reduce his constant vomiting. Adam’s ulcers have flared up again as well, and are causing him a lot of pain, especially in the night. Whilst in hospital, Adam started having a different type of epileptic seizure, and these have continued since he has been home, so he will be back to the neurology department in the near future too, for an EEG and MRI. He has a few difficult months ahead, but we are hopeful that the doctors are right when they say the new treatments may be life changing.

Adam, despite being extremely tired, has continued to be his lovely, giggly self, and was very pleased to finally be able to go back to nursery. Unfortunately for a little lad who loves biscuits so much, he has had to go nil by mouth for the foreseeable future, as eating and drinking is getting too dangerous to his health. He is working hard on his physio and communication exercises and we even think he may have tried to copy his sister talking the other day. Use of his right hand has improved from helping to open so many envelopes!

Adam has very much enjoyed his first month with Post Pals and now recognises that an envelope or parcel making its way over to him is going to contain something exciting. Thank you to everyone who sent something – if you included your address, we will be in touch soon!

Thanks to Anne for the dinosaur card which made Adam laugh so much; to Sarah G for the teddy card and the lovely story which has been read out about 5 times now; to Becky Fisher for those lovely pictures (especially the fire engine) and her letter; Juno – Adam loves his mobile; Kate W – Adam and Hannah have both enjoyed reading Zigby over and over again; Jane sent a lovely set of pictures of her cat which Hannah in particular was fascinated by; thanks also to Carol who sent the Toy Story sticker book, which we’ve all had fun with (Mum and Dad included), and finally to Percy – Adam thinks you’re the cutest dog in the world. If we have forgotten anyone, our apologies, and thank you for welcoming us so warmly to Post Pals!

Story written 2011

Aaron was born at 39 weeks on the 27th March 2000. He weighed in at 5lb 12oz and he was so little he could fit into his Daddy’s hand. He struggled at first and the doctors had to give him oxygen to help bring him round a little, as he was very drowsy.

When he was born the doctors noticed that Aaron had undescended testes, which can be quite common in boys, but they could not be felt higher up at all. They decided that a hormone test and a chromosome test should be done to see what was causing the problem. After an agonising 2 week wait for the result, the hormone test came back normal but the chromosome one came back abnormal. It was explained to us that Aaron had a re-arrangement of his chromosomes, he had too much of number 14 chromosome and not enough 18 chromosome, but as it was such a small amount they didn’t know how it would affect Aaron. The Doctors had not seen this before so did not know what the future held.

Aaron didn’t like being fed and because of a very high palette he had trouble eating and swallowing. After battling for 7 years Aaron had a gastrostomy fitted. This was the best thing we’ve ever done as before he was so fragile but after the gastrostomy he put on weight and got heavier and stronger.

Aaron suffers badly during the winter months and often ends up in hospital where he is well known. At one point he was going into hospital every six months but now it is just once a year. Aaron will start off with a slight cold but this will get worse and turn into pneumonia requiring IV antibiotics, IV fluids, oxygen and nebulisers and a week in hospital. He does suffer with asthma but this is controlled with inhalers.

Aaron also has cerebral palsy. He is unable to sit unaided and is wheelchair bound. He does love to lie on the floor though. Aaron is a very happy boy and loves to interact with other children. Even though Aaron can’t speak he can make sounds. He can wrap anyone around his little finger and always gets his own way. He is such a loveable young man and loves his little brother jumping all over him.

In March 2010 Aaron underwent a fundoplication operation. He was not his happy self after and in July had to undergo another operation to loosen the tie off. He is now getting back to his happy self. He has been extremely brave and always comes out at the other end with a massive smile on his face – that’s why we all love him so much!

Update 25th February 2018

We have had a long hard think and have decided we are now ready for Aaron to move on from Postpals, he is coming up to 18 anyway and we’ve had many happy years with Postpals and now want another child to experience the smiles that you have given our family. We can’t thank you all enough for the wonderful happy post & definitely lots of smiles also the support when things have got tough with Aaron’s health. We cannot thank you all enough for everything you have done for us, you are an amazing team of people, from the bottom of our hearts THANK YOU

Update 15th October 2017

Aaron is doing ok, he’s had his usual chest problems, but luckily with the help of his nebulisers we have kept him stable and out of hospital. He’s recently had a check up with his hips and this is still ongoing and we’ve got to closely watch him and then go back to see the surgeon.This is to see if they will just wait and see if they’re dislocated or if they will operate to put it back into place. He had his eyes tested yesterday and been told he now has cataracts, but no one will do anything about it due to his health conditions. Your post always cheers the boys up and makes them smile. Thank you to all the people behind the scenes who make Post Pals what it is today.

Update 26th June 2017

Aaron is doing okay at the moment, we are waiting to undergo heart tests as he keeps going into SVT (high heart rate) for no apparent reason, so he has been referred for 72 hour ECG to see if this is heart related or if it’s brain related. We think it may be related to the heat with it being so warm. So looks like it might be body temperature related, like overheating. Fingers crossed tests will confirm this and it’s nothing heart related. We are still monitoring his hip as may need an operation on that in the coming months, but the surgeon asked to monitor him to see if in pain and if we think he is then they will look at operating.

Update 4th May 2017

Aaron’s had an up & down month, had few appointments regarding different things, one being his hips. We have discovered he had a partial dislocating left hip, he had an operation on his right hip when that was dislocating, so we are expecting it to happen again. We saw the consultant last week and have to closely monitor him for the next couple of months, to see if we think he experiences pain when changing, bathing, moving & handling etc. Then we will go back to the consultant and see if he needs another hip operation to correct the left one.

We’ve had respiratory appointments as he has now contracted Pseudomonus again, which he keeps getting over and over again. This is a bacterial infection that causes lots of coughing up some very nasty stuff and a dry mouth. Also in the last few months we have noticed that Aaron keeps having SVT (where his heart rate shoots up) we are now hoping to get in to see a heart specialist to see what could be causing this, as it can last from a few minutes to hours, resulting in 999 call to hospital and then medication to bring it down and back to normal. We thought that maybe it  was infection related, but it just seems to be happening more and more. Maybe it’s the Pseudomonus that’s causing it, and he is having treatment for this, antibiotics and nebulisers twice a day.

But he always comes out the other end with a smile, and it’s thanks to all your post that keeps us and him going through all these hard times. Thank you from the bottom of our hearts.

Update 2nd March 2017

Aaron is poorly at the moment, just waiting on results to see if it’s just the nasty cold virus that’s been going around or if his lung infection has returned. If the lung infection has returned then it will be a case of returning to the nebuliser with antibiotics for at least 3 months, twice a day! Which Aaron is not a fan of!

Also not had great news the last few weeks, went to see the hip specialist and it turns out he now has a left dislocating hip, just like he had with the right one a few years ago, so now the specialist is consulting with the specialist at Sheffield children’s hospital to decide a plan of action. If they leave it and watch it, or go ahead and operate, as it requires an 8-9 hour operation, pin & plates in the hip bone, spica pots on from his waist all the way down to his feet and then the big bar across, for at least 3 months. So we’ve got to return in 3 months to discuss what they have decided to do.

So all the post the boys have been receiving has come at the right time to cheer us all up, you don’t know how much it means to us all thank you!

Update 9th January 2017

Aaron is doing ok, we’ve had appointments with the consultant, been re referred about legs as he’s not happy when sat for long times in a wheelchair so there maybe a hip problem, we’ve also been measured for a new wheelchair. Hopefully he will find that more comfortable.
Aaron also had been quite well over Christmas, we had to re start the nebulisers due to the Pseudomonus lung infection coming back, but up to now looks like the treatment is working and no hospital admission is needed.
Thank you for all the amazing gifts the boys have received over the Christmas period and the whole year, you guys are amazing.

Update 15th November 2016

Aaron has been ok. He’s had various tests as we thought the Pseudomonus has come back, but as yet they are all clear, but now the winter has started this is where Aaron does get poorly so we’re trying to keep him wrapped up and warm, hopefully the winter won’t be too bad and we have no admissions to hospital. Aaron has received some amazing post this month and it certainly does make him happy & smiley, really does cheer him up after a bad day or when he’s in pain with his hips/legs. Thank you to everyone who has thought of the boys and sent them letters, cards & gifts, it means the world to us all.

Update 6th September 2016

Aaron has been ok. He got blue-lighted into hospital a few weeks ago, just before we went on holiday as his heart rate hit 220 BPM for around a couple of hours so he had to go into hospital. But when he was in hospital they couldn’t find a reason why this happened, so they put it down to the hot weather. He has been referred to the heart specialist to see if there’s an underlying condition causing this as it does happen every now and again.

He had been retested for Pseudomonus as well as we think this has come back again, only been off the nebulisers for 1 month, so maybe a long term medication now. But waiting on the results of that.

We had a wonderful weekend in Chessington, was lovely to meet so many of the pals and families.

Thank you for the letters, cards & pictures & gifts the boys have received this month, always puts a smile on their faces. Thank you.

Update 9th August 2016

Aaron has been ok. We have now finished the antibiotic nebulisers, which he has had to have for 3 months due to Pseudomonas infection, which is an infection in the lungs, once you get it you never get rid of it, it stays there but you have to control it. So we have to wait and see if it flares up again now he is off the nebulisers. If it doesn’t then great, but if it does we have to give Aaron nebulisers twice a day every day, over the winter months and see how he goes from there.
We went away to the Isle of Wight last week. The week before was very eventful as we were trying to get everything ready, making sure everything was packed up, Aaron decided to spark a temperature when the weather was hot! He then decided that his heart rate was going to spike to a whopping 220. We tried everything to get it to come down, but to no avail. After a couple of hours of his heart rate still going at 220 we decided to call the Drs. for advice, as the hospital usually only give him paracetamol and ibuprofen to get his temp down. So thought I’d ring the GP first. After speaking to them, they advised 999, so 3 days before going on holiday a trip to A&E it was, but as soon as the ambulance arrived and he was put in the back of the ambulance, his heart rate decided to go back to normal. It was as though nothing was wrong with him. Usually it’s the sign of an infection brewing. Luckily, lots of tests were done, but nothing was showing up as to what had caused it, so they observed him for a few hours and prescribed antibiotics, just in case he was brewing an infection and then we were allowed home. He has now been referred to a heart specialist, as this happens quite often when he spikes a temperature, so maybe looking into what can be done to prevent it, whether it will mean an operation or medication, we are not sure!!
But when Aaron is feeling low and poorly all your post helps brighten his day. Thank you from the bottom of our hearts.

Update 3rd June 2016

Thank you for all your lovely letters, postcards, drawings, cards & gifts, they do mean the world to us all.

Update 4th May 2016

Update 2nd April 2016

Aaron has had a lovely birthday month, thank you to all who sent cards, letters and gifts! We took Aaron away for his birthday to a lovely place in Northumberland, which had its own sensory room and hydropool. Aaron had a fab time, unfortunately on return he has come down with a chest infection and is on antibiotics yet again, hopefully within the next few days he will turn a corner. His heart rate has spiked a few times, but with lots of TLC he has got through it, but lots of disturbed nights for both Aaron and us. He is now on the correct medications and has started to settle, luckily no hospital admission or 999 calls needed, very close, but managed to avoid it.
Again thank you to all who sent both the boys cards,letters and gifts this month.It does mean the world to us all and has made Aaron’s birthday and Easter very special.

Update 3rd March 2016

Aaron has been doing ok, we have had a few ups and downs due to leg problems again.We are waiting for an appointment to see the consultant to see if anything can be done and what could be causing it, as it’s beyond painful for Aaron. He cannot straighten his leg and is currently having to be given paracetamol and ibuprofen at regular intervals.

All your cards, letters and gifts really do cheer him up when he is down, and makes him and his brother smile.
Thank you, it does really mean the world to us.

Update 9th February 2016

Aaron has had a good January, he has settled back into the routine of school. But he is still having trouble with his legs and we are still waiting for an appointment to see the specialist. But with the help of his upped dosage of  muscle relaxant he is managing well and also his Radox bubble bath is helping. His stomach issues are still on-going, but again with the help of medication this is being managed.

Thank you to all who sends gifts, cards & letters, we love reading them all. We are in the process of trying to write back to people who send us post. So if you could pop your address on the letters, cards & parcels, we would love to write back to thank you all personally.

Update 5th January 2016

Aaron has had a good Christmas, better than last year, which saw him in hospital. We have recently found out that he has lost lots of weight due to his change in feed to help with his ongoing stomach issues. So put him on a gentler soya based feed, but this did not have enough calories, so he has lost nearly 2 stone since July. After talking with the dietician they have changed his feed again, fingers crossed it seems to be working and the weight is slowly going back on.
We are still waiting for  an appointment to see a specialist regarding leg issues, as he suffers badly with cramp.After speaking with Aaron’s consultant, he referred him to a leg specialist, so he can assess if his hip has dislocated again or if it’s his muscles that are going into spasm. If that’s the case he may need Botox injections or the muscles cutting slightly to relax them.He wakes regularly through the night with the spasm, so hopefully won’t be too long before he gets an  appointment.
Aaron’s chest has been ok, but we think the 3 antibiotics that he’s on for his stomach are helping with his chest.
Thank you to everyone who has sent cards, letters & gifts to the boys, it means so much to us all, from the bottom of our hearts, THANK YOU.

Update 2nd December 2015

Aaron is doing ok at the moment, he has been up and down but mainly with stomach infections.He is now on 3 lots of antibiotics once a month to help keep it at bay, but this has an effect on his bowels, so not nice for him. The dietician recently changed his feed due to his stomach problems and put him on a peptisorb type which is gentler on his stomach. This has caused him to lose over a stone since July, which isn’t good. Now his overnight ventilation is causing him problems, due to it  being loose fitting, as he has lost lots of weight on his face.So  we had to get the respirator out and have got to order new mask etc. Because it has got to have be tight to keep it working right, it is now causing blisters on his face, even though we have dressings for it. We are hoping to sort his feed out soon, ( I hope) we are waiting for the dietician to get back in touch with us regarding this ,as it can really affect his health if he loses too much weight,as he can’t fight the winter bugs.We also have an emergency appointment on Tuesday next week with our paediatrician, due to Aaron having a lot of pain in his joints. When we lift him out of his wheelchair his legs are so stiff and cramped he screams in pain until we stretch them out and massage them. It can take up to 1 hour for his muscles to relax, hopefully there’s nothing else going on and it’s just a case of upping his relaxant medication and not needing operations for it.

Update 14th August 2015

Aaron’s not had a great few months and has had lots of tests due to a stomach problem. We’re still not sure what’s causing the problem, but are trying lots of different things to solve it. His gastostromy feed has been changed to see if this is causing the issue (which has slightly improved things), but he’s still having discomfort and bad bowels. We’re back to see the stomach specialist at the beginning of September for test results and the next lot of investigations. Aaron may have to have cameras inside of his bowel to check that everything is okay, but it is a last resort. He has also suffered with his chest, resulting in a chest infection. The respiratory team are now putting him on constant antibiotics to see if this will help and fingers crossed he will have a better month now.

Aaron has enjoyed a holiday in Somerset recently. He loved being in the caravan, being by the sea, and being under trees and woodlands.

Thank you for all your post and gifts these past few months. It means so much to us (as a family) to still see smiles on the boys’ faces when they have such tough times. Their biggest smiles come from the help of Post Pals and the amazing people who take the time to think of them both.

Update 3rd May 2015 

Aaron has been well this last month, though he still had lots of hospital appointments due to him being quite poorly last year. We have had to see a heart specialist, due to high heart rate, to see if they can find what’s causing it to happen. It seems to be when he’s poorly or brewing an infection. They have said they can operate but at the moment it’s too risky, so we have decided to watch and wait to see if it occurs again and then discuss the matter further. We have also seen a kidney specialist, again due to his severe illness last year when he went into kidney failure, and we are still waiting on the results from that test.

Aaron is enjoying school and has settled back in well. Fingers crossed now the weather is improving slightly, that things continue and we stay out of hospital until at least the winter.

Thank you for all your kind thoughts, cards, letters and gifts for the boys. We appreciate every single one. We do sometimes struggle to reply but are hoping to get through them all in due course, as it means so much to us all.

Update 20th January 2015

Aaron and Matthew have both had it tough over the last few months. Aaron has had several chest infections from October and never really got over them. He also had his regular Botox injections beginning of December, which he recovered well from, then just two days before Christmas suffered with really high heart rate. This resulted in an ambulance ride to hospital and they had to get it under control with medication. He ended up being in hospital for a week with yet another chest infection, and we spent Christmas Day in hospital. It was not nice for either of the boys, but luckily a week later we get discharged and celebrated Christmas at New Year.

Aaron is now on the mend and enjoying settling back into school. Thank you to all of you who sent cards, Christmas cards, gifts etc, it really does make so much difference to the boys and makes them smile so much. We can’t thank you all enough as it means the world to us.

Update 18th November 2014

Aaron has had an up and down time of it over the last couple months. Now the winter has arrived and the colder weather, it causes aaron so much trouble. He’s had chest infection after chest infection resulting in lots of time off school and he has only done 4 days since the beginning of October. He has had different antibiotics but hopefully now he’s had the right one and has at last started to get back to normality (just about). He is still having a hard time at school and just doesn’t seem to want to be there. I think it is more to do with the fact that he wants to stay home and watch his television.

Thank you to all who have sent him and Matthew post as it does help put a smile on their faces, especially when they are not feeling too great. Fingers crossed the weather will not get too bad and we can stay out of hospital.

Update 8th October 2014

Aaron has had a good few months and he is now back enjoying school. He’s had a few illnesses (one resulting in a near dash to the hospital) but luckily with the support of his respiratory nurse we managed to keep him at home and look after him with the help of his ventilation and plenty of antibiotics. He is usually ok throughout the summer but now the cold weather is setting in and he’s back at school we are just waiting for all the bugs to start appearing.

Update 7th August 2014

Aaron has had a rough year this year. It started last October having his hip operation and being in pots for 8 weeks, to then this Easter having to be taken into hospital with what we thought was just his usual chest infection. However, the next thing we knew he was being rushed through into resuscitation and alarms were going off and all doctors and nurses were running around. Once he was stabilised he then got taken up to the children’s ward where he was put on oxygen, but things then went from bad to worse. His oxygen levels dropped and couldn’t be stabilised. They eventually got them stabilised, but with every doctor and nurse who was on the ward in the room with us I think – even an anaesthetist was called incase they needed ventilation. The next thing we knew he was being transferred to Sheffield Children’s Hospital by embrace (ambulance service).

It was the longest journey ever, even though it was only 30 minutes away. We arrived at Sheffield and when we got outside the doors, Aaron then had an SVT (abnormal heart rate) which went to high 200. We had to run through the A&E department on to ICU, where they were all waiting for him. Eventually, after 2 doses of heart medication, it stabilised. We were called into a side room and were told that he was critical and had had to be ventilated. It turned out he had pneumonia, a bowel infection that had led to septacemia, and he also had really low blood pressure as all his organs were starting to fail. The nurses were fantastic and fought to keep him here.

Luckily, 3 weeks later he was well enough to be transferred to HDU, but then came the problem that he wasn’t keeping his oxygen levels up at night. We were told that we may have to consider a trachy but after Aaron’s ENT specialist came to see him he thought he’d try to do a tongue procedure. This consisted of them shaving off the back of the tongue, removing his lateral tonsils, and opening his airways up. After only 30 minutes in theatre he was back on HDU, smiling as always. We were again told that because of the swelling he may need to be re ventilated as this had happened before. The next day he was fine with no apparent signs of distress and none came. The doctors and nurses were amazed at how he’d recovered. Luckily, after 32 days in hospital, we were finally told we could go home!!

Since being home he has done amazing well. He’s been so happy and smily until today, as he is a little under the weather but I think it is due to the heat and his brother having cold which he may be coming down with too.

Matthew was a star too as it was hard on him with us being away for so long. He stayed with his nanna and granddad and came to stay with us at weekends. The odd time we tried to get home to see him, he was so glad he cried and never left our sides. Now he always has fear that when we say Aaron has to go to hospital, even if just for a check up, he thinks the worse and that’s where all your lovely post and thoughts are brilliant – it makes him feel special and takes his mind off us not being there. All the post we got for Aaron as well was amazing. Especially the massive mickey mouse balloon, even the nurses loved him and wanted to pinch him, despite the fact he did scare them from time to time when he decided to move in the breeze!

Update 9th May 2014

Just a little update on Aaron. He is still in HDU but now back to his normal self. He is having a small operation today as the doctors think he has a very large tongue and it’s flopping backwards and obstructing his airways. They are going to slightly shave off the back of his tongue. It doesn’t sound nice but it’s meant to be like having your tonsils out. Hopefully this works as the next step is a trachy. Fingers crossed.

Update 30th April 2014

Aaron is truly a superstar. He’s been sat in his wheelchair for the first time in 3 weeks today. I didn’t think that would happen anytime soon. He is still taking things slowly but gradually getting there and hopefully we can get him home very soon.

Thank you to every one of you who has sent post to Aaron and Matthew, we even got a personalised photo from Mickey Mouse.

Update 26th April 2014

Aaron has now been moved to HDU. He’s doing so well. He had to have his second blood transfusion today, but it’s one step closer to home.

Update 25th April 2014

Aaron is doing well, he’s now off the ventilator and breathing well. He’s still needing support from his bi pap machine and oxygen, but he’s off the kidney dialysis machine for now to see how his kidneys go.

Update 22nd April 2014

Aaron is still on a ventilator in ICU. He’s on a kidney dialysis machine and they keep turning it off but his kidneys are still not wanting to work so has to go back on it. He’s doing well with the vent so hopefully he may be taken off later. He’s waking up very slowly but there is still a long road to go. He’s on TPN as he has got an infected bowel so can’t be fed at the moment. He’s had a right fight on his hands and at this precise minute he is starting to win this fight. Hopefully he’s still got the strength to fight it and we’ll get him home.

Update 19th April 2014

Just to let people know Aaron is seriously poorly in hospital. He’s in ICU on a ventilator, recovering from pneumonia and sepsis, which has caused his kidneys to shut down and so is on a kidney dialysis machine at the moment. Lots of things going on for him at the moment, it’s a very emotional roller coaster ride.

Update 6th December 2013

Aaron and Matthew have both had a tough time over the past month or so. Aaron has had major hip surgery which resulted in him having a 6 hour operation and 2 weeks in HDU, also needing a hip spica cast on his legs, which was removed on Monday and he is now undergoing intense physiotherapy as his leg does not want to work with being stuck in pots for 8 weeks. Aaron is in more pain now than when he had the operation as his muscles have all seized up, but slowly he’s getting there. We are all immensely proud of how he’s coped with the operation and having casts on for 8 weeks, he’s done so well and coped with it all and still come out of it with a smile on is face, he truly is an inspiration. He is also now on Bi Pap machine overnight, so that’s something else to contend with. There’s nothing like being thrown in at deep end, with operation and ventilation, as he has now been discovered as having sleep apnea. He’s not just shutting off his airways but also not taking deep enough breaths and getting rid of the carbon dioxide inside his body so he’s storing it up and causing high CO2 levels and low oxygen levels all at the same time. At the same time Matthew has also coped with it well and is an amazing support to his brother, he never moans and found it very tough while we were in hospital, so the post certainly helped cheer him up.

Again thank you so much for all the post the boys have both received, it makes them both feel special and it is lovely to see so many people care, it is so heart warming. Thank you is just not enough to express how much you all make them smile.

Thank you to all who sent Aaron and Matthew cards this month as they have both had a hard time of it with Aaron having major surgery and the cards made them both feel special. Thank you for all the letters received, each and every one gets read out to Aaron and the boys love hearing what you all get up to and where you have visited. It’s amazing to hear all your stories and to share them with us is truly heart warming. Thank you for all the lovely gifts received, as Aaron spent some time in hospital they really cheered him up, from music cds to dvd’s, to even receiving a funky pigeon, who sat on his hospital bed to keep him company along with a Mickey Mouse. The gifts certainly got him through a very tough time.

Update 31st August 2013

What a roller coaster of a month we’ve had. Firstly, we got a date for Aaron’s hip operation, so were all geared up for it, only to arrive at hospital to be told there was no bed for him. Then, after few changes, they decided they did have a bed so the operation would go ahead. Off we went to theatre to then discover Aaron had a very high temperature, so the operation was cancelled. He was admitted with a chest infection though, so the operation will hopefully be happening in the next few weeks. So, now we’ve got to prepare ourselves yet again, as we now know more about the operation and are not looking forward to it. Aaron’s got to go into HDU for as long as needs be due to the operation being quite major and it can lead to blood transfusion. He needs an epidural for pain relief and also a catheter fitted, and it’s going to be a long recovery period for Aaron. At the moment he’s just getting over his chest infection but doing it in true Aaron style, with a smile.

Aaron and Matthew have enjoyed receiving all your lovely cards and postcards, you all have created lots of smiles in our house. They have loved hearing all about what you all get up to in your letters, again lots of smiles created. Thank you from the bottom of our hearts for all the lovely gifts the boys have received, from DVDs and audio books to fuzzy felts, they do make the boys feel very special.

Post Pals is an amazing charity with wonderful people and we cannot thank you enough for the smiles they have given my boys.

Update 11th July 2013

Aaron’s had a good couple of months, he does suffer badly at times with choking but that is controlled with suction and medication. We are awaiting an appointment for his hip operation which will happen early August, which we are not looking forward to. Aaron will be in spica casts for up to 3-4 months depending on healing and recovery, so its going to be a very difficult time for him.

Thank you for all the cards and postcards received for Aaron and Matthew, they love hearing your stories and where you’ve been and what you’ve all seen. Thank you for all the letters received for the boys, they all get read out to Aaron and he loves hearing all about you. Thank you for all gifts received, Aaron and Matthew love receiving them and appreciate every one of them.

Update 11th May 2013

Aaron has been up and down this month, he still seems to be having problems with his stomach, and is not tolerating feeds very well for a few days then he springs back. Hopefully we will have more answers when go back to see the stomach specialist on Tuesday to see whether he has still got the bacterial infection. We are still awaiting a date for the hip operation which is happening in August sometime.

We are looking forward to hopefully getting to the Post Pals party this year and meeting up with Post Pals themselves and the senders of post.

Thank you to everyone who sent the boys postcards, they love looking at the pictures and reading all about your travels. Thank you to everyone who sends the boys letters as each one gets read out to Aaron and lots of smiles are created by these letters. Thank you to everyone who sends the boys gifts to as they love each and every one of them.

Update 7th April 2013

Aaron has had it tough this year up to now. After discovering he has helicabacter infection, he has now finished all treatment and it has made him so much happier. We don’t know how he’s coped with it for so many years, it must have been extremely uncomfortable for so so long. He still has symptoms from time to time but not half as bad as he did.

We are now awaiting an appointment for major hip surgery as he has a partially dislocated hip, which should be happening around August time, which will leave him in spica casts for up to 8-12 weeks. Something we are not looking forward to! It will not be nice for Aaron as he likes to kick and move his legs and has just figured out how to push himself if he digs his ankles into the floor.

We would like to thank everyone who sends the boys cards/postcards – each and every one gets read out to Aaron, they do make him smile so much. We would like to thank every one who sends the boys letters, they do brighten their day and make them smile and feel special. We have had amazing gifts this month and they do make the boys feel very special and thought of so much, it is amazing to think so many people understand and care, thank you is not enough for the kind people from Post Pals.

From the bottom of our hearts we say a very big thank you, Aaron has had it tough this year so far and it is amazing to know so many people care.

Update 5th February 2013

Aaron has had it quite tough over the last couple of months, he has undergone various operations and tests, including botox injections in mouth to help with excess salvia and choking, also botox injections in leg muscles and had hip investigations which is requiring major surgery in August time, meaning he will be in spica casts for up to 3 months and will be fully housebound. Also, he has had camera investigations into stomach and it has been discovered that he is suffering from helicobacter infection causing bad stomach cramps and sickness with every feed. He has been put on yet more medication, had 2 week course of antibiotics which made such a difference for him as the specialist told us he has probably had this condition since pre school age(!) and it has never been picked up before!! Aaron then stopped the antibiotics which made all the symptoms return so has been put on another 2 week course to see what happens this time. The 2 weeks of antibiotics should clear it up, but as yet that hasn’t happened.

Aaron and Matthew enjoy reading all your cards and postcards and stories of what you all get up to! They both love all the gifts they receive too, they make the boys smile so much. It is so nice to know there are so many lovely people out there. Keep up the fantastic work Post Pals!

Update 11th December 2012

Aaron has had a tough couple of months, he has been having lots of investigations to find out why he’s struggling to take his feeds and why he is not quite himself at the moment. He seems to be constantly in pain and was admitted last week for a colonoscopy and also a camera down his throat to assess if anything going off inside. They have discovered inflammation of the bowel and have prescribed 6 weeks steroid medication. We are due back at the consultant on 8th January for all results, then back to hospital on 18th January for botox injections to his legs and maybe a hip operation (depending on pre-op assessment on 8th January).

However, all the post the boys are both receiving are making them feel very special and helping them to cope while in and out of hospital. Aaron enjoys all the cards/postcards that he receives, he loves looking at all the cards/postcards from all over the world and Matthew loves receiving them too. Aaron has enjoyed each and everyone of all your letters, all get personally read out to him one by one and he loves to hear all the stories and all the adventures that everyone gets up to, as does Matthew. Aaron and Matthew have also both enjoyed all the gifts that they have received, from all over the world.

Update 9th September 2012

Aaron has been up and down health wise. He made one day back at school after the summer holiday, then has been off the rest of the week poorly, but luckily is back to school tomorrow.

He was supposed to be having Botox injection into his leg/thigh muscles through the summer holidays but on our admission to hospital was told 3 hours later after they had him all ready for theatre that he was too high risk to operate. Now we’ve got to wait to see which consultant is brave enough to do it. I wouldn’t mind, but he’s had loads of anesthetics before and he does have a bit of bad time with them, but they should have already got his notes and been made aware of this. So now we’ve just got to wait until his surgeon comes back from his holidays to see where to go from here. In the mean time Aaron has to suffer in pain waiting to see when he can have these injections and also assessment for major hip operation.

He also undergoes botox injections to his salvia glands every 6-8 months which again is by general anesthetic, but it really helps him as he tends to choke on his secretions when getting ready for more botox. Mind you, last time they gave him too much and made him too dry.

We are also seeing his gastro surgeon on Tuesday as he is having a few problems with tube feeding at the minute. He always seems to be struggling to keep his feeds down and can become very poorly quickly, it is like a stomach bug which he never seems to get rid of and reoccurs every couple of weeks. We have to knock his feeds down or starve him for 24 hours to help him, but it is happening too often at the moment so we’re going to see if they can do tests to discover what is happening, if anything.

Aaron did enjoy going on holiday in August to Norfolk and was really well while there. He enjoyed going for a day out on a wheelchair boat that we hired! He also like laying and relaxing by the pool, even going for a swim which he loved.

Aaron and Matthew both enjoy receiving all your cards/postcards etc, each and every one gets read out to Aaron and they produce lots of smiles!! They also love receiving all your letters and hearing what you all get up – Aaron loves listening to us tell him all about your letters and again it produce lots of smiles and even giggles. All the gifts that the boys receive are truly amazing and they love each and every one of them, thank you.

Update 23rd February 2012

Aaron has had some down times lately due to infections, stomach bugs etc, and we have recently been to Sheffield for sleep study results too. He has to have them repeated in the next couple of weeks due to lots of coughing during the night, so has been put on a 4 weeks course of antibiotics which has caused stomach upsets. He then has to be reviewed to see whether he needs more antibiotics or whether the cough has subsided. At the moment the cough is still there but seems slightly better.

Before Christmas he had small operation to have botox injected into his salvia glands to help with choking, which has worked successfully. He did have a bad time in the operation due to sats dropping throughout the operation, but hopefully this will last another 6 months before having to go through it again.

Aaron has enjoyed receiving all your cards and postcards – as he has been quite unwell throughout this month with various bugs etc, the post has made him smile lots. Thank you. Aaron has loved receiving all your letters too and hearing all your news and what you are all getting up to. As he unable to read himself, every single letter gets read to him and he always smiles. They do really brighten up his day. Aaron has loved receiving all your gifts – from Mickey mouse stickers, to wall stickers for his bedroom, gelli-bath and upside down mirror which he loves looking at things upside down with!! He always has a smile when receiving gifts. A very big thank you to everyone who sends the boys post, you put a huge smile on both their faces.

Update 30th November 2011

Aaron has not had too many chest infections as yet, but as the cold weather approaches we’re just waiting for them to arrive. I’m hoping that he’s going to have a happy Christmas, as he has not had a very good one for the last 2 years and has ended up in hospital shortly afterwards.

In October he underwent surgery for Botox injected into salvia glands to help with his secretions. His oxygen levels were also dropping throughout the night, so while he was under anaesthetic they were going to do an endoscopy of his nose and throat to check his adenoids, to see if were obstructing his airway in any way. The surgeon did mention he would like to do an endoscopy while he is awake, but I don’t think that will happen, as no way can Aaron have it done while awake as he won’t keep still enough!! When he came out of theatre Aaron decided to have trouble breathing which scared not only us, but the surgeon and anaesthetist too. He was making a really funny noise and they first thought that his windpipe had collapsed and were all poised to intubate him, but luckily he decided to start behaving and didn’t need the tube down, to the relief of everybody!!

He recently had an appointment for his hips. We have been visiting clinic for a couple years now and his hips are getting worse as his right hip is displacing from the socket. He has been having x-rays on it for months now and the last time we went (3 months ago) there was talk that he will eventually need an operation to put it back into socket. This time at clinic, there was no change since the x-ray 3 months ago, so we’ve decided to leave alone at the moment and go back in 6 months. We’re dreading the day they say he has to have it done, as it doesn’t sound very nice, but we’ll cross that bridge when we get to it.

We have been to visit Santa a couple of times which Aaron just loves – think we’ve only got another 3 to see! Aaron loves going, he has the biggest smile!

Fingers crossed we have a good Christmas and Aaron’s health lets him enjoy it for the first time in few years. We want to see those big smiles on Christmas day Aaron!!

I’d just like to thank everyone from the bottom of our hearts for all the cards/postcards/letters and gifts that the boys receive, it really means so much to all of us. Thank you to all who send Aaron and Matthew cards/postcards and letters too. They love listening/reading what you all get up to, and where you’ve been on holidays etc. They really do mean a lot to us all and make the boys smile and feel special. Thank you also for the gifts received, they love the gifts that come, from balloons, drawing/writing things, puppet making, story books/musical books, it does brighten their day when they’re having a bit of a rough time. I think Post Pals is such a wonderful site, Viks and the team of volunteers deserve a special award as the dedication they put in is incredible.

Just one last thing – we wish you all a very HAPPY CHRISTMAS!!!!!!

Update 9th August 2011

Aaron had a rough start at the beginning of the year and was very poorly with pneumonia, but he has now got over that. He’s had a bad time since Christmas with bad chest infections/tummy bugs and he seems to just get over one thing then gets another.

We have enjoyed trying out a new bike which we hired from our local wood; it’s a bike where you wheel Aaron on to the front of the bike. He thought it was amazing as he loves going under trees and through the woods.

Aaron’s recently had a hip appointment as his hip is starting to slip out of the joint. We were told at this appointment that it has got a lot worse over the past 6 months. We’ve got to go back in 3 months and if it’s still looking like it could slip out and cause dislocation then it will have to be operated on. We’re hoping it’s not too bad when go back but it’s not looking good.

Aaron’s also had a sleep clinic appointment and an overnight study done. We’re still awaiting results but were told lots happened with him, so it’s looking like he may have sleep apnea, but it could be up to 4 weeks before results are totally in.

He’s also got an appointment at Sheffield Children’s hospital next week as he’s having trouble with secretions again and it is causing him to choke quite badly. It’s also upsetting his stomach, so is causing lots of retching with his gastostromy feeds. Hopefully he can have another dose of Botox in his salvia glands, as it helped when he had it 6 months ago.

He still manages to smile in between all this, especially when your letters / cards/ gifts arrive. Words cannot express what a wonderful thing Post Pals is and how wonderful people are. Aaron amazes us all where he finds his inner strength to keep smiling.

Aaron and Matthew love receiving post and hearing from you all and what you get up to. Sorry if we haven’t written back but we are in the process of returning letters, they are a bit delayed at the moment with Aaron being poorly, but the letters always make the boys smile. Thank you to all who send Aaron and Matthew gifts too, as they love receiving them. The smiles on their faces when receiving any mail just makes our day, and of course the boys. We’ve enjoyed making solar systems, sock puppets, sticking stickers, Mickey Mouse glow in the dark stickers (which we are saving for Aaron when he has his bedroom decorated in Mickey Mouse). Post Pals is a wonderful thing, it’s so nice to know people care, and Viks and the team do a fantastic job.

Update 29th June 2011

Aaron had a bad start to the year. He was really poorly over Christmas and didn’t even open his presents until January as was just too poorly. He was admitted to hospital on New Years Day as his oxygen was in its low 70’s. He had blood tests taken to find what was wrong and it was suspected that he had developed pneumonia. He was on iv antibiotics and was in hospital for just over a week. He is well known on the ward and all know his name.

It took him a while to get back to normal, as it always takes him a good month to completely recover.

We then had a good run with Aaron. When he was in hospital his oxygen levels kept dropping to low 40’s at night, so we have now got to go into Sheffield hospital overnight for sleep apnea testing, which is happening on 2nd August.

In May we went to Mexico with Aaron’s grandma and granddad. There were 11 of us altogether and we had a great time. We went on a pirate boat with Captain Jack Sparrow and Aaron was allowed on first to meet the pirates and have his picture taken. We also went swimming with the dolphins, which Aaron loved and he smiled the whole time.

Aaron suffered quite badly on the flight home as it was a night flight and he got a lot of cramp in his legs, but he finally fell asleep across me.

He went back to school then came down with a sickness bug, so had more time off school. He was just about to go back to school then he came down with a chest infection, so more antibiotics. Aaron was off school for about 2 1/2 weeks in total. He is now finally back to school and enjoying it.

When he is poorly your post just brings a smile to his face, he loves receiving all post. It is wonderful how you all send post to Aaron and Matthew also gets excited when he receives post – they can’t wait to open it! I would like to thank everyone who sends Aaron and Matthew cards/postcards, as they love receiving them from all over the world. It does really brighten their day reading happy news about what you are all up to. The cards really do make them smile. Again, thank you to all who send Aaron and Matthew letters, they love reading all your stories and places you’ve been. They love receiving Dottie the Dalmatian stories too. Thank you to everyone who has also sent gifts, they love opening them, the excitement on their faces is indescribable. It’s lovely that Matthew gets gifts too as when his brother is having bad days and is poorly it makes him feel special. You don’t know what that means to us as a family.

Update 17th May 2011

Thank you to all for Aaron and Matthew’s lovely cards, letters and gifts, especially their Easter gifts, it really does brighten their day.

Update 31st March 2011

Thank you to everyone who sent Aaron cards, letters and birthday wishes, as really did make his birthday special. Aaron loved the pom pom – huge thank you!!

He is poorly at the minute with a sickness bug which hopefully won’t last long.

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