Story written 2026

Maci was born to term but from day 1 didn’t feed well, we persisted for 10 weeks before taking her to our local hospital where we trialled all type of meds/feeds under the guidance of our local team and GOSH until she was 6 months old. She was then transferred to GOSH for her first Hickman line and the start of PN. Whilst on PN at this young age, she was nil by mouth and as she grew the hospital trialled many different types of feed but none seemed to work. We were in and out of the local for the next 5 years. In this time she had a stoma formed to try and help with the feeding and the stomach accepting feed but only for feed to still fail. Then they managed to get her body to accept jejunal feeding which up until January of this year had been working, not without challenges along the way. But this has now been discovered that the feed has been causing acute pain whilst running which led to chronic pancreatitis. Everything the doctors have tried, failed and Maci is now back on PN with a small amount of jejunal feed. This has a major effect on Maci and her quality of life, she rarely makes school due to lack of energy and struggles to keep up with her peers. This is a lot to restart at her age and brings a lot of uncertainty to her life once again.

Please do not send any food items to Sadie

Story Written August 2020

Sadie is a sassy 4 year old with a huge personality. Sadie has suffered with gastro problems since she was born and has spent over a third of her life in hospital. She has had around 90 admissions to hospital in her little life and over 20 general anaesthetics. All she has known is feeding tubes and monitors and, unfortunately, a lot of pain. After years of trying different feeding tubes, feeds and gut rest we are now in the middle of a very long admission to Great Ormond Street where she has now been diagnosed with a very rare condition of chronic pseudo intestinal obstruction. She is currently dependent on TPN into a central line and is awaiting an ileostomy this week.

Update 11th May 2026

Update 28th February 2024

Sadie has had a rough few weeks and is currently in hospital after having a new central line put in. She is now on the mend and we are hoping to be home early this week. Her PN has increased to 15 hours a day which has helped to make her feel a bit better.

Other than that she continues to be the most amazing, strong and happy child. 

Sadie loves Roblox, Lego, crafts and Barbie and at the moment anything Stitch. We are so thankful for the post that she receives and the kindness of people that go out of their way to make her smile.

Riley is now 12 and loves Pokémon, films and gaming – he finds it really hard when we are away in hospital for a while but has made himself busy by building a house for Sadie out of the balloon boxes that PostPals sent, so that will be waiting for Sadie when she gets home.

Update 17th June 2021

Sadie had a recent admission back into London for a relocation of her gastrostomy tube. This was meant to have been a relatively smooth operation but sadly Sadie ended up quite poorly afterwards and had to have 2 weeks of IV antibiotics. Currently things are ticking over OK and Sadie has been enjoying the sunshine, although the hot weather is not great for someone on TPN and we have to keep increasing her amounts. 

Thank you to everyone that sends beautiful hand written notes, cards and drawings, special thank you to Vivi who sends Riley his monthly parcels … it’s actually like you know him.

Update 2nd March 2021

Sadie is now home from hospital with her ileostomy, gastrostomy and H ickman line. She is completely dependent on her TPN but has coped so well with adapting to this new way of life. We are due to go back into hospital soon for some more surgery (so dreading that) but for now we are coping well and Sadie continues to live life to its fullest. Thank you so much to everyone that sends cards and presents to Sadie and Riley, they really do brighten their days and it has really helped to make Riley feel included, so thank you.

Story written 2017

Blakely failed to thrive as a baby and was enterally fed from a few weeks old.  He failed to meet his key milestones and then enterally feeding caused him excruciating pain. At nine months old Blakely was started on TPN on which he has thrived and has caught up on all his milestones. Unfortunately, TPN comes with great risks and none greater than sepsis; Blakely has had sepsis approximately 80 times in his life and is now on his 11^th Hickman line. He is rapidly running out of access and each hospital admission is becoming harder with Blakely being more aware of what is coming next.

Ellie’s Amazon wish list and Blakely’s Amazon wish list

Update November 2025

Blakley and Ellie’s interests have been updated. Blakely is current in hospital with sepsis again.

Update 25th March 2022

Blakely has gone from strength to strength since recovering from covid, the covid severely affected his gut for approx 18 months. Blakely struggles massively with his emotions at the moment and understanding where he fits into school etc, after having so much time off. He is now starting to settle. At his last clinic appointment, we were told that they believe that Blakely may now be strong enough to start weaning off of his intravenous nutrition which is a massive step for him. He is very excited as this will mean he can go to America which he has wanted to do for a very long time.

Update 7th November 2019

We’ve had a lot going on. Blakely has been doing well with his health (touch wood). He is reducing his TPN but is struggling with being different and hates his bag at the moment. He still loves Marvel and DC super heroes and continues to do really well with his drumming lessons at school. He’s in a band now called the mega flash penguins.

Update 9th February 2019

Blakely’s health has been much more stable over the past few months and now has one night off TPN!!  However, he is starting to struggle with day-to-day life and explaining his emotions and feelings.

Update 2nd September 2017

Blakely’s health has been a struggle the past month but is slowly improving and with the start of school coming we are hoping for a good spell of health over the next couple of months. Blakely loves swimming and loves being in the water. Thank you to everyone at Post Pals for brightening Blakely’s smile when he is having a bad day.

Story written 2013

Theo made rather a dramatic entry into this world 4 weeks early in October 2008… right from the start we knew he was trouble and would never take the easy road in life and we were apparently right!

Right from the start we had issues with his feeding and by 3 and a half months old we were referred to a local paediatrician who diagnosed Reflux. By 8 months old Theo’s problems had worsened dramatically and he was vomiting copiously, had cut out his solids diet and barely touched milk. He was put on a high calorie milk but he could only manage a tiny amount which would quickly resurface across the room. At this point he was referred to a surgeon in Leeds and when he was 10 months old he underwent a Nissans Fundoplication and had a gastrostomy placed. Everyone thought this should have been our cure, that our problems would be solved… well they weren’t, in fact, his issues seemed exacerbated.

His symptoms gradually worsened and in March 2011 he was diagnosed with multiple food protein intolerance and had a large amount of the food groups removed from his diet by his doctor. Theo still continued to deteriorate and his symptoms worsened. He suffered from severe bloating, reflux, facial rashes, facial swelling, problems with his bowels and vomiting bile.

In August 2011 Theo was referred down to Great Ormond street hospital and in November he was seen for the first time. Theo had scopes in December and commenced on steroids in January 2012. Unfortunately he didn’t respond to the steroids and was admitted to our local hospital in February. They tried various treatments but Theo continued to worsen and lost a lot of weight so in March 2012 he went to Leeds and had his gastrostomy changed to a gastro jejunostomy and they removed foods totally from his life.

Throughout this time Theo took everything in his stride and continually charmed all who came into contact with him, his bravery was amazing. He commenced on jejunal feeds and did well initially but then the inevitable happened and he went downhill again, he continued to lose weight and his hair began to fall out.

In June he was yet again admitted to Great Ormond Street and went through a set of tests which really were terrible for both him and for me to watch. These tests showed he had problems with his gut motility and they arranged for him to go back in September for a test which required surgery. Unfortunately Theo didn’t do well post operatively and required total parental nutrition for a short time to boost his system while they built a modular feed through his jejunal feed. They eventually managed to wean him off tpn and get him onto full feeds down his tube. A supposed few day admission had turned into 6 weeks but we walked away with a diagnosis and now knew Theo suffered Chronic Intestinal Pseudo Obstruction and has Eosinophilic gut disease underlying.

Currently things aren’t going well for Theo and his health is deteriorating further, we have been in our local hospital recently and are now awaiting to see our doctor at Great Ormond Street. We are hoping for a new plan for Theo.

Theo is an amazing little boy and with lots of love, laughter and cuddles, and we do our best to embrace life between the hospital admissions and appointments.

Update 6th August 2014

After a long think we have decided that now is the right time for Theo to move on from Post Pals. We have been so grateful for the immense support from yourselves and your volunteers and in the very dark days stuck in hospital it has meant the world to see a smile from Theo due to a card or gift sent from someone.

We will always be grateful. Keep helping the children and doing an amazing job!

Love always,

Verity, Nathan and Theo xxxxx

Update 11th April 2014

I have to firstly start with an apology… it has been an awfully long time since I updated Theo’s page and for this I am sorry. It has been a tough time and though I know this is no excuse as people go through far worse then us, it just seemed I couldn’t do it… I couldn’t bring myself to put it down on paper or at least on the computer.

So, last time I updated we were awaiting a prolonged admission to Great Ormond Street. This was to remove an embedded gastro jejunal tube and also to look at Theo’s bowel and how it was (or wasn’t as the case was) working. We went in under the surgeons and as it turned out his tube was so badly embedded in his abdomen that it required major surgery. He was in theatre about 5 hours and came out very poorly and with a central line inserted to give him complete gut rest. It turns out it wasn’t that anyone had done anything wrong but Theo had reacted to the tube and because of this he could never have that tube again. He would move onto a Mickey Gastro jejunal button once his little body had time to heal (this was 6 weeks later). Theo remained very poorly and on strong pain relief for a while and also had TPN while his gut healed.

Once Theo had begun to recover and his gut had rested he had a nasojejunal tube inserted, this in itself was incredibly tough for both him and for me to watch this process. It wasn’t easy but once he finally got used to the tube being there we began feeds again into his small bowel and gradually reduced the TPN he had been relying on. This again was tough for Theo, it created pain and suffering for him and his gut really wasn’t happy. We did finally manage to get him up to full feeds and then the next part of the admission began.

We then moved onto trialling various medications to try to make Theo’s large bowel work better. The gastroenterology doctors tried various combinations of very high dose laxatives (to be fair they would have made a grown adult cry at the doses they gave) and again he showed his strength and bravery and endured each part of the process. The drugs made him hurt and gave him a lot of pain but we knew we had to try them throughly.

It was eventually decided that these just weren’t working and we were told his only option was surgery. So after 10 weeks in Great Ormond Street we were allowed to go home in the short term and await the surgeons to move on with the next part of the plan. We went back to GOSH after about 2 weeks and saw the surgeon who explained our options and arranged for Theo to go in for a stoma imminently. We went home scared but relieved we finally knew what may help Theo to be more comfortable.

We went back into GOSH for his operation on the 4th November due to the fact Theo cannot maintain his blood sugars off feed, so he commenced iv fluids and went to theatre on the 5th November. He came back 2 hours later looking very comfortable on a good combination of pain relief for him. He was utterly amazing and we managed to reintroduce his feeds with minimal fuss and left a week later.

At home we began settling into a new routine and Theo was doing really well. There was a lot for me to learn and added procedures added into our day but Theo was happier which was what it was all about.

Theo then ended up having an emergency admission to GOSH in December after his new stoma obstructed. It was very stressful after he appeared to have been doing so well. He was on iv fluids for a few days and then, yet again, we slowly introduced his feed again. We managed to get it back in with a few issues and a week later we were on our way home again.

We were home just in time for Christmas which was lovely. We had family up to stay and Theo was utterly ruined by not only us, but by his wonderful Post Pals family. I want to say thank you so much to each and every wonderful volunteer who sent a beautiful card or gift. Theo loved opening every one and the lovely smile it brought was amazing. I am truly grateful to you all.
Since Christmas Theo has been managing to go into school all day with the support of his teaching assistant. He throughly loves school and they all adore him… how could you not!? He has lots of friends and they all fully accept Theo for being him.

He is now hooked up to his feeding pump 24 hours a day and 2 feeding pumps overnight as he loses so much fluid from his stoma we have to closely monitor and replace the fluid so he doesn’t become dehydrated and therefore unwell. We have had a few close calls where we have had to go to get him checked at the local but with a few tweaks we have managed to get home again.

We have had a few appointments this month and have a few things on next week, with a gastro jejunal tube change in Leeds on Friday and a fitting for his specialist boots on Tuesday, so he keeps us busy!

Though the surgery really has been amazing for Theo, unfortunately a lot of his issues remain and his pain is really quite bad at the moment. He continually surprises us with his immense bravery and acceptance. I want to again thank each and every one of you for your support and wonderful post… it really is amazing.

Update 3rd July 2013

I want to take this opportunity to thank each and every person who has sent post to my little man. You have no idea the difference it has made for him and brightened up the toughest day… there have been a few of those unfortunately.

Last time I updated we had been to Great Ormond street and they wanted Theo in for an urgent admission. Due to problems with beds etc we have finally got a date for next Monday (8th July). I can’t say I’m excited about it but it has to be done. Theo really needs some help to try and sort him out a bit so he is more comfortable.

We have had continued problems with his failing tube and have been backwards and forwards to hospital in a vain attempt to try and let them get it working. Unfortunately the flange of his tube is now embedded and the gastrostomy port has not been working for a couple of weeks. This has created issues for poor Theo but unfortunately all we can do is wait until next week for Great Ormond Street who will replace it. It is a bit of a mess now and rather infected so bring on the tube change. We have no idea what else they have planned for him so all we can do is wait for next Monday.

We have tried to make the best of family time until we go and have visited the seaside a few times. Theo has loved this but with his health deteriorating the traveling is increasingly difficult and he suffers badly in his car seat so we are limited in where we can go. His energy is lacking and he is struggling with pain. He is, however, typical gorgeous Theo, and does his best to enjoy what he can and tries his best to smile through it. We really hope this admission will bring some relief and we shall come home with a comfier little boy.

Post pals continues to be an absolute godsend for the family and especially Theo of course. It brings a lovely smile through some very tough times we have had and I want to thank everyone who has cared enough to send Theo some post. We treasure everything and all our cards and letters go in scrapbooks for Theo to look at when he wants to.

Update 9th May 2013

I firstly have to begin with a great big massive thank you to every single person who has cared enough to send Theo post and gifts. We really have been totally amazed by the kindness of strangers and these people are fast becoming friends. Theo is having a tough time so the smiles the post brings is so valuable.

The last time we updated we were waiting on an appointment with Theo’s consultant at Great Ormond Street. We went at the end of April and unfortunately the news isn’t good. The doctor was very unhappy with the state of Theo’s gut and the amount of distention he is getting. He also felt the level of Theo’s pain was unacceptable. The upshot of the appointment is that Theo requires a long term admission to Great Ormond Street to try to help him and his issues. Though this is gutting, as we are so far away when we are in there, it comes as a relief that they are going have him in and make a new plan of action.

While we are in Theo will have a new gastrojejunal tube placed as his isn’t in a good way and also have upper scopes and biopsies done and then the rest is in the hands of the doctors there.

So we wait… we wait for an admission date and a bed to be available and  while we wait we continue to plod on and try to keep Theo as well and comfortable as possible.

I shall aim to keep everyone updated on when we are going in and forward the address of the ward we will go into as I’m so hoping the happy post continues as I’m sure it will be a wonderful break for Theo in the long days in hospital.

Thank you again to everyone for the amazing post. Post Pals has been truly a god send so far for Theo, it has brought him some much needed smiles and therefore for us too… it is an amazing charity.

Story written 2010

Poppy is a loving, smiling, happy little girl. She was born at 28 weeks and from birth she had inflammation of her bowel and started treatment for it at 3 months old. She was initially ng tube fed, then nj tube fed by 6 months, and her first operation was at 9 months old when she weighed just 8lb.

Over time, more and more things became apparent with Poppy. She had pseudo obstruction from 7 months old, hypoglycaemia caused by a rare condition called growth hormone resistance, and poppy has delayed gross motor skills and couldn’t sit until 18 months and didn’t walk until 2 and half years old. She used a walking frame and has special boots and orthotics. She also has Ehlers-Danlos Syndrome too.

Poppy has been tpn dependant since January 2010 and has suffered many line sepsis since November 2009, with 4 bouts of pneumonia, cellulitis, and with multiple bugs in her blood stream at one time. Her inflammation has got much worse along with the pseudo, and on many occasions we have nearly lost Poppy as she has been so ill. Somehow her little body fought hard and she is still battling on and always with a smile!

Poppy’s intestines are really struggling this past year and even though she’s on TPN she’s still not gaining weight or growing. She has a MRI booked for the 26th July 2010 of her bowel. In May she was put forward for small bowel transplant, but she is not a candidate as yet, so her battle continues and we can carry on giving her the best life we can when we’re not in hospital.

Update 30th March 2015

Well, what a year we have had. As you know, Poppy got her transplant call in September and she had a really rocky time. What with her abdomen being open and huge infection problems, gvhd and rejection, collapsed lungs and every complication possible, it was very tough.

However, Poppy’s finally turning that corner. She’s still needing iv fluid at night… but she’s off tpn and she is able to eat if she likes, but she gets her calories via her ng tube. Poppy’s open abdomen wound is getting there and we are hoping it will close within the next month. She’s almost 7 months post transplant so it’s been a long road for her with her wound and it’s been pretty difficult at times, so it will be amazing for her once healed. We also found the day of transplant that Poppy’s genetics came back as a defect gene, so we at least have some answers.

At the moment Poppy has a ileostomy stoma and a colostomy stoma too. In May, Poppy will have more surgery to close her ileostomy and her new colostomy bag will finally be in use. Our team are hoping that by doing this now Poppy’s colon will be less inflamed and cause less issues for her – it’s a right pain at the moment for her! They may revise her scar as it’s huge and possibly close her stomach muscles too… or this maybe done with the next surgery when they close the colostomy and reconnect her new colon. So there is a lot more surgery planned for poor Pops but she’s a little star and I’m sure she will bounce back!

Next month Poppy is seeing the cochlear implant team, as last year she became severe/profoundly deaf. It’s been really difficult all round and we are learning sign language, but she’s been assessed at Great Ormond Street for cochlear implant surgery, so possibly more surgery on the cards.

Poppy’s rejoined her class in school after nearly 3 years out of school, it’s just a few hours but it’s enough for her right now. She hates going but once there she seems happy.

Lots has changed for Poppy but mostly for the good. It was really tough in the years and months before transplant, and we honestly never thought she would make it through. Transplant has been a real journey, and by no means a cure, but whatever time we get we will live to the max… enjoying and making memories as much as possible.

I feel now is the right time to move the girls on from Post Pals. It’s been lovely and you guys are amazing, but I feel lots of children are more deserving right now. I’m sure in the future when Poppy needs re transplant we will be back as they only give you 3 or 4 years maximum with these organs, but for now we are doing well.

Thank you so much for all your help, post and smiles over the years. It’s been amazing and has made long stays in hospital so much more bearable for the girls, as you never forget Coral either. Thank you to everyone who has sent us post over the years, it really has been appreciated and helped us so much.

You can keep up to date with us on Poppy’s Facebook if you like ‘Poppy our fighter’. We intend to have lots of fun to share on there!

I have one more ask of you all… please think about organ donation, sign up, discuss it. Poppy is more than proof it’s worth it… if you have followed Poppy you will know her journey to here. Organ donation saves lives.

Update 11th November 2014

Pops is doing amazing! This super princess has definitely cracked it this time… go Pops! It’s about time… we are in our 10th week on picu/hdu. Maybe this week we might make the ward if we can get her bp more stable! Blood pressure is still being a pain, so she is still hooked up to infusion. The obstruction keeps causing pain but hopefully they’ll have a look with a camera this week and make a plan. Lots of resistant bugs as usual too so back to full gowning up for anyone visiting our room. Arrrgghh pesky bugs!

She is looking much better though – such a difference in just a few days. She is eating skips and sipping juice which is amazing as she has never eaten in her life! Keep it up Pops!

It is amazing what organ donation can do! Always so grateful and thinking of our donor family xx

Update 7th November 2014

Poppy had her transplant on 5th September (5 organs). Shes had a rocky time and still hasn’t left itu/hdu in the whole 9 weeks. She’s had lots of problems with the same infection bugs from before transplant and they are now in her open wound so has had a lot of sepsis. She had a 2 week period where we didn’t know what was wrong, 2 solid weeks of a high temp which wouldn’t come down and her needing bipap. She also had an awful rash and after a skin biopsy it showed Poppy has GVHD. This is where her donor cells within the new organs were attacking her tissues/organs making her very unwell. She has responded well to treatment so far but until she comes off the treatment we won’t know if it will return as it hasn’t fully gone from her skin yet. Her open abdomen is getting a little better but she has had problems with it going necrotic due to an underlying condition of connective tissue meaning that she doesn’t heal well. Poor thing.

Poppy has taken all this in her stride and has coped so well, but she’s really missing home now. We all are. Coral is at home and we are over a 500 mile round trip for a visit so it’s really tough all round. Pops is a fighter so we will get there… just got to keep the hope.

Update 14th September 2014

Day 8! Pops is finally off the oxygen!! Just need everything else to improve! Come on Pops!

Update 12th September 2014

Pops is the same really, no change. Blood pressure is still being a nightmare. Added in yet another infusion (9 pumps running!) so still in HDU and will be for a while yet. No feed this week now as the gut is not coping yet and the pain is still bad from her open abdomen, bless here She’s a little star!!

Update 10th September 2014

Pops is in HDU now. Her blood pressure will keep us here a long time as she’s on lots of drugs/infusions for it and it’s still not good. We knew this would be an issue as it’s one of her biggest problems. GOSH are helping with advice. Her pain is really bad due to the open abdomen, bless her. The pain team are amazing as always and trying their best. The biggest most amazing thing ever is we are running 5mls per hour dioralyte into her new bowel, bypassing the new stomach…WOW!! Keep praying as it is just day by day… hour by hour… she’s a little star!!

Update 8th September 2014

Pops is off the ventilator, on oxygen and still in ITU. Her blood pressure is still an issue and hard to manage but they are chucking everything at it, she always has issues with it so we expected this. She’s doing well and stable… all the expected problems but she’s fighting. The pain is awful for her as she’s still open and will be for a few weeks. Such a brave girl.

Update 6th September 2014

Pops is out of surgery. She had some complications but she’s doing ok. Now her journey of recovery starts so please keep praying. The surgery was just 8 and a half hours! I love our surgeons, they looked after my baby. Sadly they couldn’t close her abdomen though so she will still need more surgery in a few weeks.

Update 5th September 2014

Poppy got her call at 6am. Two ambulances and a helicopter later we arrived. It’s been a long hard day. Poppy is in theatre now (9pm) and it is the start of her new life.

Thinking of our donor family tonight with so much love for the life they’ve given. My baby is so brave… please keep praying.

Update 9th August 2014

I’m so sorry I’ve not update for a long while. Poppy has been in and out of ITU and ventilated a few times too this year, the poor girl is having a rough time.

Her transplant listing has now changed and sadly includes a liver too, so she is now on the list for 5 organs (full multivisceral-liver, small bowel, large bowel, stomach and pancreas). She has been 10 months active on the transplant list now!

She is still having ongoing infections and pancreatitis pain, so is on a lot of morphine and a huge dose for her patch. Since the increase she is definitely much more settled and happier but is still having a lot of pain.

Sadly, poor Pops has lost her hearing and is now profoundly deaf. She now wears hearing aids on both ears and this has affected her (and us as a family) hugely. Her behaviour can be difficult along with not being able to communicate well. It has been tough all round as it was very sudden but for poor Pops is must be so hard. She was very withdrawn but seems to be getting used to it now and we now need to learn to sign too.

Life is still pretty much on hold until she gets her call and a chance at life. She’s not been to school since the beginning of reception class (she would be Year 3 this September) and it’s so sad she’s missing out on all the primary years.

She’s still crazy as ever though and has acquired a ‘Disney channel’ attitude to boot, bless her. It’s amusing when she’s so teeny… you forget she’s 8 this year!

Poppy and Coral are loving the loom band craze… It keeps them busy, though it’s mainly Coral! Coral is doing fantastic in school and has done amazing with her reading and is way above her age, she’s a star! Poppy still enjoys her colouring in and anything pink!

Update 4th December 2013

Wow it has been a long time since we updated. Poppy is listed for a small bowel and pancreas transplant and we have spent nearly all year in hospital. Things just got worse and everything we have tried just made things worse. We really tried to get her gut feeding but she just can’t, bless her. She’s had 5 picu stays this past year where shes literally fought to stay with us. One of her worst was the encephalitis through which she sustained a brain injury with damage to a large area. She really did amazing and way better than her picu doctors thought she would, but it has left her with a left sided weakness, seizures, obsessive behaviour and needing splints on both legs, but she’s still a star! The ongoing pancreatitis is awful for her as she’s in a lot of pain which we are trying to control with a morphine patch plus added morphine and it does get her down at times. She gets very fed up but Pops being Pops, she is still as crazy as ever and still laughs like mad at silly things!

Coral has had a tough year and big changes for her due to Pops care being so much at home now with lots of iv drugs all day. She has so little time with me and we don’t get out or do fun stuff anymore, so she’s missing out a lot. However, she is doing brilliantly at school and is so helpful at home – I couldn’t manage without my little sidekick!

We just pray Pops gets her transplant call soon and she gets the princess life she deserves. I feel 2014 has to be better.

Thank you to everyone who sends post to both girls, it means a lot and cheers Pops up lots. We love our Post Pals family! Thank you Bev Higgins for the advents, what a fantastic idea! Poppy loves it, she can’t eat or drink so this cheers her up loads!

Update 21st September 2013

Poppy is awake and off the vent and most importantly is still herself. The neuro team are astounded by how bad her MRI is and how well she has pulled through!! What a star Pops is!!!! Literally improving by the hour, managing to do more and more things, as her brain creates new pathways. Go pops!!!!! Can honestly say we really truly are so lucky, she had amazing treatment in picu which all helped her and we are so so greatful and lucky to still have our girl.

Update 16th September 2013

Poppy has had an up and down time and after a stay at Kings it has been decided that Poppy will be listed for transplant. They were waiting for test results to decide which organs she needs in addition to a new bowel.

However, this week, Poppy took a turn for the worse yet again and was admitted to Manchester PICU and placed on a ventilator, as amongst other things she is having uncontrolled seizures.

Today came the very bad news that Poppy has a large area of her brain that is swollen and damaged, both from birth and now from this. The doctors need to keep her resting in PICU to let the swelling reduce before they can wake her to see how the damage has affected her. All we can do is hope and pray that Pops is still Pops when she wakes up and that we can control these seizures.

Update 30th July 2013

Poppy has lost at least 6 litres of fluid and is looking much more like her normal self. She is now breathing by herself (but on O2) and back on the main ward. Today she said a couple of words for the first time, this latest PICU stay has taken its toll on her.

Update 27th July 2013

Pops had a stable night, she has a high temperature again though and her liver is very big and her liver bloods are not good. The frusimide infusion and restricted fluids (1.4mls an hour of tpn!!) have helped as she has lost a lot of the fluid she had on her. She is amazing, bless her.

Update 26th July 2013

Last night Poppy was flown down to Great Ormond Street and spent the night in theatre.

Update 25th July 2013

Poppy has been moved to ICU in Manchester to be ventilated as she is really not well, needs a chest drain put into her chest to drain her right lung, and the heart stents caused a superior vena cava obstruction as well as infection, causing her head to be hugely swollen. She is struggling bless her and is just so poorly.

Update 7th February 2013

Poppy has been admitted to GOSH and will be having surgery to remove her colon. We are hoping she might be able to be discharged by the summer but it will be a long stay away from home and Coral.

Update 27th October 2012

It has been a long time since i have updated and a lot has changed, but sadly not for the better.

In the last 6 months Poppy has deteriorated a lot. Not only is she tpn dependent but she is now dependent on IV fluids day and night too, meaning she is connected intravenously 24 hours a day. She’s pretty fed up with it all. She got a line infection after a bowel procedure in April and things have just gone from bad to worse.

She has had horrendous pain and she’s now on a range of pain medicines including nerve meds, morphine and codeine. She had to have emergency  surgery in Manchester children’s hospital in August due to a prolapsing bowel which ended up with her being in HDU. She then got septic and had to have her hickman line (which she gets her nutrition and her fluids through etc) removed due to the infection and how sick she was. She went to theatre and had a central line put in, but due to poor access she ended up with a line in her foot, which was very uncomfortable due to the vein being very inflamed.

Her bowel in the last 6 months has massively deteriorated and was so dilated and distended she was unable to sit, and was needing oxygen at times due to the pressure it was putting on her lungs and diaphragm. She couldn’t even sit up, and tests showed her small bowel had deteriorated and wasn’t working and flowing backwards into her stomach. So, she had more bowel surgery to form a ileostomy (this is a stoma) to help relieve the pressure.

This operation went a little wrong, meaning a day later she had to go back to theatre again to be reopened and have the stoma moved. They also had to sort out a mass of adhesions. Poor girl, by now she’d had enough and ended up in HDU in GOSH this time. Once again, she was septic after surgery and ended up needing oxygen and was poorly and I was living on a knifes edge not knowing what was next. It had been an awful few months previous to the surgeries, she had barely been to school since April, and when she did she needed morphine administered in school to help her pain.

She arrived home from GOSH on September 3rd, just in time for me to take Coral for her first day of school. Poor little Coral, she had been shuffled from pillow to post all summer.

Poppy still wasn’t at all right, and was still on iv antibiotics and iv antifungals – then a week after these finished she took a turn again. She was so poorly this time she ended up in PICU in Alderhay hospital. It was a very stressful time and brought back many memories for me losing my son Oliver in the same way. Lately, all her organs are under a great strain, so she’s retaining fluid massively, she has very high blood pressure despite meds, her heart rates racing all the time, her nervous system has become affected and she has shakes\tremors, she’s so swollen and puffy due to the fluid shifts, and this infection just overwhelmed her very quickly and she went in to septic shock very quickly. Its always a TPN mums biggest fear and we were living it. Luckily, Pops is a fighter and she came through, she had amazing care and we owe our local consultant her life for getting her onto isotropes and ventilated and transfered so quickly.

Since her bowel and general deterioration means she now can’t attend school, she’s pretty fed up. She’s been crying a lot and is very sad about things. Being connected to ivs 24 hours a day means no more swimming, which she loves to do, and in general we don’t really do much as a family anymore. She tires very easy and generally just feels unwell.

The plan for now is that she has been referred to Birmingham children’s hospital for bowel transplant assessment. We really don’t know how we feel about it, but the negativity about where we are at right now from everyone makes us feel like we have no where else to go. It is just very scary. We are currently waiting to hear if they are going to remove her colon too, as this is a great source of pain. She’s needing lot of pain relief and is having to be on so many strong immuno suppressions etc, to try to help her inflammation, plus she now has enemas which she hates. I just really feel for Pops in all this.

On a good note, Coral is really enjoying school, and is doing very well and is very bright – yay, go Coral!! Poppy is to start home tutoring after half term, so that will keep her busy, and hopefully it will be fun learning too. She’s getting very good on the laptop and is enjoying cbeebies, and now is a huge fan of moshi monsters – she tries to play online but it is quite hard, so i have to help and read it to her – she has a pink moshi online… always pink, still. We have a new amazing OT who has got her a new big comfy armchair for home which reclines and she spends most of her day in this and loves it. I would love one too! It reclines and is amazing! We have tried her in a fab new wheelchair too, which we find out on the 7th November if we get the funding for it. We really hope so as Poppy’s really looking forward to having a chair the same as her beloved Post Pal ‘Dominic B’… so watch this space!

Thank you to everyone who sends post and just thinks of us at our tough times. Post Pals is always a godsend when Poppy’s poorly and stuck in hospital and is for Coral too. To know people remember her too is great as siblings are often forgotten. Particular thank you to Emma (Isle of Man) and Nathalia. Thank you for the personalised stickers too as both girls loved them!

Update 8th June 2011

Poppy’s doing ok on this new Ivig treatment, she seems to have a little more energy, and has been off iv antibiotics now since the end of March when she had aseptic meningitis and pseudomonas line sepsis.

She’s been having lots of problems with her left ankle, it’s very stiff and painful, especially in the mornings, so she’s just got to exercise through it while we wait for X-ray and scan results, and wait for a podiatry/orthotic appointment as the left leg isn’t growing and is much shorter than the right.

Poppy starts big school in September and she got the school we wanted for her and they have been fab.

Thank you to everyone who sent Poppy and Coral Easter craft sets, they had great fun making things. They loved the tiny little pram and dolly that Libby sent coral too, she plays with it every day.

Post Pals is just fab, the girls love the postman now.

Update 15th April 2011

Poppy is in hospital as she turned blue/grey tonight.

Update 28th March 2011

February was not a bad month in all. Poppy had two chest infections needing iv antibiotics, but luckily we can do them at home. She was having masses of pain from her bowel so is now on new meds and they seem to be doing something but not fully working yet. Poppy had her educational psychologist assessment ready for school to see what help she’ll need for school in September.

We had a lovely weekend away just local to us in our caravan, but the weather was terrible and Coral fell face first in the mud. Poppy found this very amusing, bless her!

The great news is that Poppy has finally got funding for her IVIG treatment. GOSH are paying on a trial basis. We are very hopeful that this will help her immensely in the long run, and even a possibility it may help enough to get back onto tube feeds. Keep everything crossed please!

Thank you for Poppy’s letters from Rachel and Adam, Mandie and Rosie, Emma, Sarah G, and lots more. Poppy loved her build a bear outfit too, very cute! Thank you.

As usual, you guys do a fab job and always manage to bring a smile on the most hardest of days. It means the earth, thank you.

Update 18th March 2011

Poppy was in GOSH for an overnight TPN MOT on Monday and started her new treatment. Unfortunately she reacted to it and had aseptic meningitis and a bacterial sepsis. She’s on IV antibiotics and hopefully going home later this evening – as we do all her care we can manage her at home. Fingers crossed this treatment helps things but we are a bit worried about the next dose, although she will be pre-medicated this time.

Update 18th February 2011

Well it’s been an up and down winter for Poppy this year. She has pretty much been on IV antibiotics the whole winter. In December she was very unwell and they were talking about PICU, but miraculously, with a lot of iv’s and blood transfusion she picked up. She was in a lot of pain and needed morphine, her mouth was full of ulcers and very sore, and it was so upsetting. New Year she had flu, so it was more ivs, oxygen etc, and home on ivs. Her gut in that time was terrible causing proctitus flares. The winter has been bad due to her bloods not being good, her bone marrow very suppressed and neutropenia, meaning for 8 weeks we were housebound, even over Christmas.

Back in October, her immunologist at Great Ormond Street told us of a treatment that really could improve her life – intravenous immunoglobulin therapy – and she was applying for funding from the local PCT. We were excited at the prospect that within 6 months of being on it Poppy could come off tpn and back to jejunal tube feeds!! Amazing! However, the local PCT turned her funding down, unfairly. To cut a long story short, appeal process started, emails to MP’s flew back and forth etc and by now GOSH were realising we were not going to give up. On Valentines Day we got the call to say that GOSH were going to fund it. Yipppeee!! We’re very happy and hopeful that this will make a difference to her so keep your fingers crossed! 🙂

At the moment Pops is ok, no infections and no ivs. Her gut is up and down and we’re trying to combat dehydration at the moment but she’s not happy about being connected to either or another machine all day.

Sorry for the slow update but we’ve moved house and had no Internet!

Thank you to Sarah Marshall for the lovely elf box for Coral – she loved all the princess things, especially the dolly and she shared her box with Poppy too. Thank you Post Pals for the girls’ balloons! Poppy’s going to have her deflated Minnie mounted on her wall. Thank you Jenny for the stickers. The smile box from Germany was fab and they shared it all! Viks and Kate, thank you for the tea set as the girls love crafting and they play with the tea set all the time! I’m hoping I’ve not missed anyone but the internet has been off and I’m trying to catch up!

Post Pals is amazing and a whole new world for Poppy. Life for her can be strange living in Coral’s shoes, as in it is Coral’s nursery and Coral’s friends, Coral can eat and drink etc, but when she gets post sent to her from what she says are her friends, it really does light up her face with a smile. Thank you!

Update 16th November 2010

Poppy’s blood works are not good at the moment, her bone marrow is very suppressed, her liver is struggling at the moment, and she’s anaemic so it is making her feel up and down and very tired. They’ve stopped her immunosupression for a week and then they’ll reduce the dose to see if this helps, but it will possibly have an adverse effect on her gut. She’s not allowed out at the moment or to nursery etc, as infection risk is very high. We’re going to Disneyland Paris on the 23rd of this month, but we need Poppy well to be able to go. Her bloods need to be better or we won’t be going, but she’s still smiling, bless her.

Thank you Alison for the Halloween gifts and they also loved the flannels! Thanks to Post Pals for the Halloween bag too.

Update 27th October 2010

Poppy has been up and down recently. She’s home which is fab and with home TPN we are having much more time at home now. We’re still having lots of problems with bacterial overgrowth and diarrhoea and pain , she’s just finished yet another course of antibiotics. She has seen her immunologist at GOSH and they want her to try immunoglobulin therapy IV (IVIG). They’re hoping this will help her immune system and her inflammatory problem. It’s a 5 hour infusion every 3 weeks at GOSH and after 3 tries we can do this at home as we’re IV trained. So fingers crossed!!

We’ve had a lot of change of medication lately to try and help her gut, but not much change yet. Poppy is happy though and is now in nursery and enjoying it a lot! She’s also doing gymnastics too as it all helps with her physio programme; she finds it very tough and is exhausted after but is enjoying it.

We are going on holiday to Disneyland Paris in just 4 weeks time. As you know, Poppy is a massive Minnie Mouse fan, so she is extremely excited!

Thank you so much to Viks and Kate and all the Post Pals gang for running Post Pals. Poppy loves it! Thank you for Rosie and Mandy for Poppy’s gifts; I’m subjected to Mickey Mouse DVD all day now! Thank you to everyone who sends Pops cards and pictures and thanks Emma Stone for the pictures of badger. Thanks also to Dottie the Dalmatian – Poppy loves your adventure post! Thank you so much for Poppy’s DVD player as well, it is literally a life saver. She is in bed by 5pm most days exhausted and loves to watch her DVDs.

Update 13th August 2010

Poppy is currently in our local hospital in Blackpool with a line sepsis. Consultants are all very worried as her immune system is very poor at the moment and she’s not responding as she should. Her body’s not responding outwardly with the infection which is worse, so we’re hoping these new antibiotics kick in and that she improves.

Thank you all so much for your post as it really does cheer her up!

Update 29th June 2010

Poppy is home at last after 7 months in GOSH on TPN. She’s doing ok at home, but still having a lot of pain, her bowels are not good, and she is still losing weight despite being on TPN. She is pretty worn out, bless her, but very happy to be home. The bowel MRI is on 26th July at GOSH.

Thank you for Poppy’s cards this month. Viks sent a lovely hand made one, Emma Stone, lovely cards from the USA too. Poppy and Coral are very lucky girls! Also, thank you so much Post Pals as the girls had a huge parcel and loved their chair! They coloured the bean bag dogs in straight away too. Granny Ruth sent Poppy a Charlie and Lola magazine which she loves, she’s really into her magazines and books! Thank you to Louise for the Peppa Pig bags, Poppy now carries her feed pump in her one! Thank you to Alison L, she’s great! Thanks to Steph, Poppy loves her pink poodle. To everyone else who has sent post, thank you!

Post Pals is brill and has brought a new life to Poppy! She’s not really got any friends because she’s too poorly for nursery and is always in hospital, but now she has lots of friends who send her post and it has really brought a huge smile to her face when the postman knocks! So thank you!

Update 15th June 2010

The girls got their Post Pals parcel today and it was very unexpected! Thank you! They were so excited, giggling like mad! Apparently it’s a magic chair, it walks! The wind blew it along in the garden and they were wetting themselves with laughter! Brill! Definitely a much needed smile as Pops has been in a lot of pain again today. Thank you!

Update 7th June 2010

Hey all! We are home! Poppy is all connected to the TPN too.

Thank you all so much for the post you’ve sent Poppy and Coral! They just love receiving it. We had just arrived home tonight after a long journey (screaming, tired, bored, sore etc) and Poppy was grumpy and in pain, but it soon livened her up to come home to post!! We’ve decided to keep a notebook of addresses starting from now on so Poppy can write back, as she’s in bed early now at home because of the TPN and it’ll give her something to do. She’s had so much post it is hard to keep up!! Loads of love and thanks! You’re amazing people!

Update 21st May 2010

Well Pops is definitely on the mend; our doctor just said she’s a very lucky little girl to pull through. She was very very sick – 10 days she was fighting it and she’s very worn out. I feel so relived an grateful she’s still here! Nothing will stop me smiling! Now it’s just a long recovery.

Update 20th May 2010

Yet another bad night. PICU doctors wanted to do a CT scan over night as her head is swollen and morphine’s not touching the pain in her head and she can’t move. They reduced all her fluids because she’s so swollen, bless her. Just waiting for doctors now to see what’s next. MRI and echo and possibly CT scan needs doing. Poor little thing. We’re waiting on big news today for her. I will update when I know anything. I’m so tired it’s unbelievable! Little improvement today, but don’t want to count my chickens as when ever we have a sigh of relief that maybe she’s turning a corner, it goes wrong again.

Story written 2006

Macaulay was born on the 20th of March 1995. He had pneumonia and was in special care for 15 days. He was then allowed home for 2 weeks and wasn’t feeding properly or gaining weight. He was then transferred back to hospital where they detected a heart murmur so he had an operation to repair that at 5 weeks old at the Royal Brompton in London. He was then transferred to our local hospital to recover.

Then they found he had more problems as he kept projectile vomiting, so they did a Nissans operation to stop him from being sick. From there on his health went down hill, I battled for 7 years to say there was still something wrong with him as his stomach blew up like a balloon. They eventually transferred him to Great Ormond Street Hospital where it took them 1 year of extensive testing to come up with the diagnosis of his problem – Neuropathic Pseudo Obstruction.

The only treatment for this is several different medicines; they have formed an ileostomy and gastrostomy. He is on Peptamin fed via his gastrostomy 3 bolus and 1 pump feed.

Update 29th March 2013

Macaulay is moving on from Post Pals as he is doing relatively well. Post Pals has been a great support to him and my family over the years and I would like to thank you all for all the hard work that you do. You will always be thought of in my heart and I hope Post Pals keeps growing and more support is given to you.

Thank you all again, Andy, Macaulay and family xxx

Update 1st March 2013

Hi everyone, we hope you are all doing ok. Macaulay has had an ok month. He had his last visit to GOSH as he will be reaching 18 on 20th March and he has now been transfered to UCLH. It was sad to say goodbye to his doctor as he has been going there for about 9 years. They have been great over the years and we have got to know them very well. We will miss them very much. It was also his last month at his respite place as he will now be moving over to the adult side of social services. I can’t believe he will be 18 soon, the time has come round very quickly, it is so scary. He has 1 more year left at school then he will go off to collage for a bit then we will have to help him find a job.

Thank you for the post that has been sent to Macaulay and his siblings.

Update 14th January 2013

Hi everyone, I’m sorry I’ve not updated for a while things but I’ve not been too good with my own health.

Macaulay is not too bad at the moment and he has been busy at school and college. I have been chasing GOSH for a while now as they have not seen him for a long time and they are supposed to be sorting out a transition meeting as he will be 18 in March. He has had a few obstructions since they rejoined his bowel but not as many he was having, so fingers crossed things have calmed down now he is older.

Thank you for the post sent to Macaulay and his siblings, they do love receiving it.

Update 17th October 2012

Hi all, I’m sorry for not updating for a while but I have not been too well of late and had to go in to hospital 2 weeks ago to have my spinal stim sorted out.

Macaulay is doing well at the moment, there has been a few bad days for him, but he seems to be doing good now. He is enjoying school and collage – he is making a bird table at the moment so it will be good to see the finishing table.

Thank you so much for sending the cards and gifts that Macaulay and his siblings have received, they are very grateful.

Update 12th March 2012

Macaulay has had an okay month. GOSH put him on a new feed but it was too rich for his tummy and it was making him feel really uncomfortable, so he had to be put back on his old feed.

He is enjoying going to college one day a week. He is learning life skills and made some cakes which he was very proud of.

I am going in to hospital myself soon to have my spinal-cord stim sorted out as it has been causing me some problems.

Thank you to everybody that sends mail, it puts a big smile on their faces when they get post. I would also like to thank you all for the very hard work that you put in to making Macaulay and his siblings smile. I hope you are all managing to stay as well as possible and not getting these horrible bugs that are going around at the moment.

Update 12th February 2012

January was quite a busy month for Macaulay with lots of different appointments. There has been lots of changes made, he has been put on some new feed and new meds to help make things a bit better for him, so let’s hope it does. He has not been feeling too bad but he has his moments where his tummy flares up. I’m still not sure it was the right move for his bowel being rejoined.

Macaulay is starting collage after half term, so a fresh challenge for him. We hope everyone is as well as can be and thank you for the post that has been sent to Macaulay and his siblings.

Update 11th January 2012

Hi everyone, first of all a happy New Year to you all!

I’d like to say a great big thank you to Sandwell Academy for all the lovely gifts they sent Macaulay and his siblings, your very kind thoughts blew us away. A huge thank you to Macaulay’s elf too and for the lovely cards he received.

Macaulay isn’t doing too bad at the moment. There is being some changes made with his feed though as he is losing lots of weight which isn’t good. When we was last at GOSH his consultant wasn’t too happy with the way his tummy looked so we are hoping things will settle.

We all had a lovely Christmas and Macaulay was very excited. Macaulay is glad to be back at school and into a routine though.

You all work so very hard to help put a smile on our children’s faces and I would like to say a big thank you to you all.

Hope you are all well and take care, love Andy and Macaulay.

Update 6th October 2011

Macaulay has had some up and down days of late but he just plods on through it all. He is enjoying school and going to college. He is doing cooking two days a week so looks like I need him to start cooking me my dinner now!

We had a party on Saturday for his brother, Grant, who is now 18 and we all had a great time.

Macaulay is loving playing with his new little sister who is growing very quickly.

He has some hospital appointments coming up so lets see what’s next for them to do.

I hope everyone is well and thank you for the post that has been sent to us.

Update 29th August 2011

Macaulay has had some up and down days the last couple of weeks but is doing ok at the moment. He has got to go in GOSH on the 3rd September for more surgery.

We have managed to go out on some days out the last couple of weeks, but it has been difficult for me as I had an operation on my back on the 9^th.

Macaulay is looking forward to going back to school as he will be going to college 1 day a week which will be good for him.

Thank you to everyone that has sent post to Macaulay and his siblings.

Hope everyone has had a good summer and take care.

Update 11th August 2011

Just a quick update as I’m not feeling too good after my surgery.

Macaulay is doing ok at the moment and has been busy going to all his clubs. He has got to go to GOSH soon to have more surgery though.

I hope you are all well. Take care, Andy.

Update 29th June 2011

Macaulay is not so good at the moment, he had his operation on the 3rd to rejoin his bowel, but since then he has not been so good. He gets lots of trapped wind which makes his tummy blow up like a balloon. We have been up to GOSH every week since, as the doctors are keeping an eye on him and if things don’t settle down he may have to have the stoma back, but it will be for good this time.

It was great to meet some of you at the party. We enjoyed it and Macaulay loved having his picture drawn.

I hope you are all well and can enjoy some of the sun we are getting at the moment. Thank you for the post that has been sent to the children too. Take care, Andy and Macaulay.

Update 5th May 2011

Macaulay is not having a good time at the moment. His stoma is prolapsing 3 to 4 times a day. We are still waiting for the surgery date so it all can be sorted out. The new baby is due this month as well so we hope it is sorted before then. It’s making things really hard for him as he is not allowed to do any sports or swimming, which are things he enjoys very much.

It has also been a very sad month for him as his uncle passed away very suddenly. He will be greatly missed.

We hope you are all well and enjoying the lovely sun we are getting at the moment. Thanks again for all the lovely post.

Update 5th March 2011

It has been a busy month for Macaulay. He has been going up to the hospital once a week since his bowel prolapsed to have blood tests, as his sodium levels are low so they’re keeping a close eye on him.

We are still waiting for the date for him to go back into GOSH to have the bowel rejoined.

He is still not back to his full activities at school, like his football and basketball, which is frustrating for him.

Thank you to all that have sent cards and gifts to Macaulay and his siblings. It puts a big smile on their faces. We hope you are all well and have a good March.

Update 7th February 2011

It has been a crazy last couple of months with lots going on and to top it all off I had to rush Macaulay to London to GOSH on the 25th as his bowel prolapsed quite severely. He had emergency surgery that night and they managed to save bowel and put it back into his tummy. The surgeon has now decided enough is enough and is working with his gastro consultant to re-join his bowel in March, which means a long stay in hospital.

Macaulay is still weak from what happened and it is as though he has given up. He has said he has had enough so now so I’m trying to encourage him to keep going.

Macaulay is hoping to go back to school soon but his return has to be staggered.

Hope you have all had a good start to the year and are well. Take care all, love Andy and Macaulay xx

Update 7th January 2011

Hi and happy New Year to you all. It has been a hard few months during the build up to Christmas and Macaulay is having his ups and downs but he soldiers on.

We went to our local hospital today to see his gastro consultant. Things have stayed the same for quite some time now and Macaulay is on this long road with his illness that doesn’t seem to be going anywhere. He sees two gastro consultants that have different opinions (one at our local and one at GOSH). The surgeon at GOSH has said that it would be better for Macaulay to have his bowel reconnected and for them to do something different, but at the moment his doctor at GOSH is very reluctant to do it. However the one we saw today said they won’t know what would happen unless they did it, but I’m not so sure if I want to put Macaulay through it for him to go back to square one. So we have difficult decisions ahead.

Sadly, on the 14th of December I lost my Mum, which was not expected. Our Christmas was ok but hard as my Mum’s funeral was on the 21st.

On a happy note, my new baby who is due in May will be a baby girl which I’m very happy about.

Hope everyone had a good Christmas and New Year. Thank you to everyone who sent the children post, they were very excited with the gifts they got. Take care everybody and have a very happy and healthy 2011. Love Andy & Macaulay.

Update 14th December 2010

Hi everyone sorry for the late update but it has been a bad month all round. Macaulay is doing ok at the moment, he still has his ups and downs but he is plodding on. Bless him; he is getting very excited for Christmas. He is doing his Christmas play at school this week which he has a leading part in, so I can’t wait to see that.

I’m trying to stay strong at the moment as my mum is seriously ill in hospital and it is not looking too good for her. I will be glad when this month is over as it has been a hard old month.

I hope you are all well and you all have a very merry Christmas. Thank you for all the post that has been sent. Love Andy and Macaulay xx

Update 3rd November 2010

It has been a hard old month. We’ve had lots to do and Macaulay has had a couple of appointments. He is going to GOSH this month to see his consultant and surgeon to talk about his stoma after they redid it. He has had some obstructions this month so not sure if what they did has made it any easier for him.

I’m still having lots of problems after my surgery; the stimulator is not working so well so I’ve had lots of pain. My wife is also not so good at the moment. The good news is she is having a baby, but the down side is she gets very sick and has to keep going in to hospital to be rehydrated. She is on her fifth stay and she is only 12 weeks along, so I’m hoping things settle down soon.

Thank you for the post that has been sent this month. I hope you are all well and looking forward to Christmas. Take care everyone.

Update 5th October 2010

It has been a crazy month. Macaulay is doing ok at the moment though has had lots of appointments at different hospitals. I’m still recovering from my operation, it has been very sore and I need to go back to have my stimulator sorted out as it is giving me some problems. My wife has not been too well either so its been a crazy time, but all good fun I guess?!

Hope you are all ok and thank you for the post that has been sent.

Update 17th September 2010

Sorry I’m a bit late with this update but it’s been a bad month. Macaulay has been up and down with illness, he had his stoma re done but it has prolapsed a couple of times. We’ve been back to GOSH to see the surgeon; he has put Macaulay back on the operation list to have it sorted out.

He is settled back in to school now after a long summer holidays – his started early because he had his operation before the start of holidays.

I have had my operation now too; I had it on the 7th of September to have my spinal cord stimulator implanted. I’m not allowed to do anything for 8 weeks which is driving me mad.

I would just like to say thank you for the hard work that is put in to making Macaulay happy, as well as the other Pals. A very big thank you to Ria for the lovely pillowcases and to everyone who has sent post.

Update 3rd August 2010

Hi everyone, I hope you’re all well and having a great summer.

Well, where do I start?! It has been a busy time. Macaulay had his operation in June which went ok but he was not allowed back to school for two weeks after the operation. After that, he was all set to go to school but then he got an infection in the operation site, so he was not allowed back again and his summer holidays started early.

Then, about two weeks ago, he was in the garden with his brother and sister playing when he had to go and empty his stoma bag. After doing that he came up to me and said ‘Dad feel this’ so I did and his bowel had prolapsed about 5 inches. I had to ring the ambulance to take us to the local hospital and when we got there the doctors had to ring GOSH as it could not be dealt with at my local. We had to be rushed up to GOSH as if the bowel was left much longer it would die. When we were about 5 minutes away we saw it had worked its way back in, so they kept him in over night just to make sure it did not do it again. The surgeon had done an operation to stop this from happening, but the stitch has broken away and it prolapsed again last weekend too. So, now we are just waiting for the surgeon to come back from his holidays so he can deal with it.

I had my operation when Macaulay was in GOSH – he had his on a Friday and I went over to GUYS on Saturday and had mine, then went back to GOSH. It went well and has helped with my pains so now I’m waiting to have it implanted in my body.

Thank you for all the post that has been sent and for the swimming pool, the little ones love it.

Have a good summer, love Andy and Macaulay.

Update 31st May 2010

Hi everyone, sorry I didn’t update last month but as you know I had an operation on my back to help with my pain. The good news is it worked for the pain in my leg but not my back, so I’m going back in to have this new thing they are trying at the moment – fingers crossed it works.

Macaulay was due to go in GOSH at the end of May but it has been moved back to the 24th June, so will be in there with him for a couple of weeks.

Macaulay received his love quilt this month which is lovely and a lot of hard work has been put in to making it. We would like to say thank you so very much to all that made it. Thank you also to everyone that has sent cards, letters or a gift this month.

He is doing ok at the moment. He has had a few ups and downs but he keeps on going. Hope everyone is well and I hope you are all managing to enjoy the sun we are having. Take care, love Andy & Macaulay.

Update 3rd April 2010

Macaulay has had an up and down month with his illness and has been getting lots of obstructions. We went to see his surgeon at GOSH last week as his consultant wanted him to see him because he thinks it is Macaulay’s stoma that is causing the problem. The surgeon is going to redo Macaulay’s stoma as it is protruding into his stomach, so he said it will be a 3 hour operation to sort it out and a 2 week stay in hospital, which will be at the end of May.

He had a great birthday and got lots of cards and money which he bought himself an Xbox with. It is something he has wanted to get for a while. We took him bowling and for something to eat afterwards. Thank you so much for all the lovely cards that you all sent.

It is going to be a busy couple of months with hospitals as I’m going in soon for an operation on my back too, but not until I’ve got Macaulay sorted first.

Hope you all have a happy Easter and don’t eat too much chocolate! Take care everyone, love Andy Macaulay.

Update 10th March 2010

Sorry I’m a bit late with the update but I have been in hospital myself for two weeks.

Macaulay has had an up and down month. We are waiting for him to go in to GOSH to have his stoma refastened as his doctor thinks it will help it work better and they are giving him a break from some of his meds to see what happens.

Next week he has a pantheon challenge 5 aside football competition with school which will be good and he got a gold medal last year.

Hope all are well and this weather starts to change. Thanks for Macaulay and his siblings post.

Update 6th February 2010

Macaulay has had an up and down month. We went to GOSH to talk about a bowel transplant, but at the moment they don’t feel it’s for him. They are looking at some other options, his medication is going to be changing, and he will need to go into hospital to have his stoma re-done to see if that will help with the soreness and the blockages he’s getting.

Macaulay has been working hard at school and he has some football tournaments coming up which he will have fun taking part in.

I (Macaulay’s dad) am going into hospital from 22nd February for 2 weeks to have treatment on my back and an operation at the end of it.

We hope you are all well and had a good January. Take care everyone and thank you to everybody who has sent post.

Update 6th January 2010

Macaulay had a great Christmas. He was very excited we went to stay with family and everyone had a nice time.

Thank you to all the lovely elves who took the time to send Macaulay and his brothers presents. They really loved them. Hope you all had lots of fun at Christmas too.

We have lots of snow at the moment, like most of the country, and the kids are loving it because they have no school.

Macaulay is going to GOSH later this month to talk about the next step on what they going to do.

Hope you all have a very happy year, love Macaulay and Andy.

Update 3rd December 2009

Macaulay has had a ok month. We went to chase to meet Simon Cowell which was good and Macaulay got very excited. He has been working hard at school for his Christmas play, plus he has had lots of outings with school. He has gone Christmas shopping today with school, so I hope they don’t get to wet with this bad weather we are having at the moment.

On Tuesday night he went to a party at Crystal Palace Football Club, they have a Christmas party for disabled children every year and he had lots of fun and met lots of the first team players.

On Friday we are all going to the chase for the weekend and it will be our last stay as Macaulay will not be going there any more. We are going to miss it as they have been a great support over the years.
We are still waiting for an appointment to go to GOSH to talk about the bowel transplant.

We wish everyone a very happy Christmas and a great New Year. Hope you all have fun and have lots to eat.

Update 1st November 2009

Macaulay has had an ok month with his illness. We went up to GOSH to get some results and they where ok.

We have to go back to GOSH soon to have a meeting with his doctors to discuss a bowl transplant though.

He has been working hard at school and we went to the chase on Thursday to meet Simon Cowell. He gave Macaulay a signed picture which Macaulay likes and he was also in Friday’s Star newspaper. Simon Cowell was very nice to all the kids – he is not like people think he is!

We hope you are all well as can be and thank you for the post that has been sent.

Update 6th September 2009

Macaulay has had a good fun filled 6 weeks holiday. He has been places with his carer, stayed at his respite centre, and went to the 02 with them to see Walking With Dinosaurs. Then we have stayed with my in-laws and we went to the Littlehampton beach which was good. We also saw one of the other Pals and it was good to catch up.

Macaulay’s health is still up and down and we are going back to GOSH in October for results.

I’ve been put on new drugs for my back but they are not working, so when I go back this month I will be telling them and hopefully they will suggest something that will help.

Hope everyone had a good summer and is well.

Update 4th August 2009

Macaulay is doing ok at the moment. We went to the Isle of Wight for 4 nights which we all enjoyed very much and we didn’t want to come home!

At the moment Macaulay is at the Chase for a week and then he is going into GOSH for some tests for 2 days. After that he’s going to Mencap for the day and we have a family day trip to the beach planned, so a busy summer for Macaulay.

Update 2nd July 2009

Macaulay has had a up and down month but is ok at the moment. We went to the hospital today for him to be fitted with his hearing aids so hopefully it will help him hear much better now. He was meant to go in to GOSH at the end of month but it has now been changed to August.

He is getting excited about going on hoilday soon. We are all looking forward to it so let’s hope the weather stays nice.

We hope you are all well and thanks for the post we’ve received.

Update 2nd June 2009

Macaulay went to the hospital about his ears and they wanted to do another grommet operation. I said no to this though, as they clearly aren’t working after already having it done 4 times, so he will probably have to have hearing aids again. We’re still waiting to go in to Great Ormond Street Hospital for his test.

He had a nice half term holiday as we all went to stay with my wife’s mum and we went to the beach for the day which was lovely. Macaulay has been getting angry a lot lately and hurting his younger siblings though.

Update 30th April 2009

Macaulay has been ok this month. He has been to his after school clubs and had a meal out to teach them independence etc. He’s also been to his respite centre and he went to a sports centre where they do different fun activities.

This Sunday (4th) he’s going to Crystal Palace football ground to watch the last game of the season by special invitation with 6 other boys from his school, because they were in a competition against other schools and they came third! At half time, the children from his school are going onto the pitch for a special presentation.

On the 11th of May Macaulay is going into hospital to have his grommets put in again. We are also waiting for an appointment for an endoscopy to see what is going on with his tummy.

Thank you for the post sent this month, Macaulay particularly liked his growing eggs.

Update 4th April 2009

Macaulay has had a ok month. We went to GOSH last week to discus his illness. His doctor is not too keen on doing the gastric pacemaker as he doesn’t feel it would work for Macaulay. They want to take him in to do an endoscopy to see what is going on so we’re just waiting now to get the date on when he is going in.

He had a great birthday and got a DS which he hasn’t stopped playing.

Last week he did a Panathlon Challenge with his school against other boroughs. They played different games like table cricket which they won and they came third out of six in the whole competition so they all did well.

This weekend he is at his respite place which he will love even more this time as his best mate is there too.

Hope you all have a great Easter and thank you for the post.

Update 6th March 2009

Macaulay has had an up and down month. He went for his test to see what’s happening with his tummy and it does not look good. The doctors are looking at more surgery to put a gastric pacemaker in his tummy to help it work better but they said it will take a lot of thinking and careful planning, so we’re not sure when it will all happen.

On a good note, Macaulay had a football match the other day with his school and he scored two goals.

He is also going to GOSH on the 18th for the day. We hope you are all well. Take care and thank you for the post this month.

Update 2nd February 2009

Macaulay has not had a good month with his illness and we are waiting for him to go in to hospital for some tests which should be this month.

There’s been lots going on as I had an operation on my back in March last year but I’m still having lots of problems and it is hard to walk some days with the pain I’m in.

On a sad note, Macaulay’s nanny passed away last week and she will be greatly missed.

Macaulay is excited today though as he has no school because we are snowed in – the snow is about 6-10 cm high.

Thank you to everyone who sent post during January.

Update 4th January 2009

Macaulay has had a great Christmas and he got lots of pressies. Thank you all so much for all his lovely cards and gifts.

We had a lovely time at the chase, they made it so special, and on Boxing Day we went to a panto which was very funny.

He has had a few bad days with his illness and as usual he has lots of hospital appointments coming up this year. At some point he has to have an 8 hour test to see how things are with his bowl.

I hope you all had a great Christmas and are well. HAPPY NEW YEAR TO YOU ALL!

Update 6th December 2008

Macaulay has not been to well this month. He has had a really bad ear infection and has had some obstructions. He had to have an operation on his ear on Monday to remove his gromit as the ear drum had grown over it and it is very sore.

Today, Saturday, he has gone to a Christmas party with the Chase which he was looking forward to. Jessica has gone on a sleep over with her rainbows group which she was also excited about.

Macaulay’s younger brother, Joshua, has now been diagnosed with Cerebral Palsy, which i thought he had all along. It has been a really busy month with taking Macaulay and Joshua to the hospital and my mum has just had to go in a home as her health has got bad, so i have had to look at some homes for her. She has gone to a nice one now and has settled in well. My feet have not touched the floor this month!

On the 23rd we are all going away to the Chase for Christmas which will be great and we are all looking forward to it.

Happy Christmas to you all and have a great time.

Update 1st November 2008

Macaulay has not been too bad this month. He’s had a bad ear infection but it is getting better and he’s been busy working hard at school.

He has started some counselling now to help him try cope with having a stoma which he has found very hard to cope with and to help with some anger problems.

He has gone with the Chase to the Top Gear Motor Show today and then after they are going to watch them film Top Gear.

We hope you are all well and keeping warm on these very cold days we are having.

Update 29th September 2008

Macaulay has had an ok month and has been busy back at school. He has had some bad days with his illness but is ok now. We went to GOSH on the 24th and all is ok there, but they are not making any changes at the moment. He will need to have an 8 hour test again next year to see how things are going and to see if they can rejoin his bowel. We are back at GOSH on the 7th and 28th of October, so it’s busy.

Grant, Macaulay’s brother, has just come back from being away with the chase on a 72ft yacht. They went to Yarmouth, Poole and Isle of Wight which he enjoyed.

Update 1st September 2008

Macaulay has had a busy summer going to his respite centre and out with his carer. We all went to the beach and had great fun and on the 27th Macaulay went to Southampton with Chase. They went on this really posh boat and had lunch in Portsmouth, and then they went to the lsle of Wight and got to drive the boat which Macaulay loved. He come home full of excitement.

It’s back to school next week; the holidays have gone so quickly. Macaulay has also got lots of hospital appointments coming up so it’s a busy September for him.

Thank you to all that sent to Macaulay this month and thanks to Post Pals for sending the out door bowling game, they love it.

Update 4th August 2008

Macaulay has had a few obstructions this month but other than that he’s been generally ok and well.

Macaulay has stayed in his respite centre and went to the beach with them. We have been to the park to play football and play on the slides and climbing frames. Today, Macaulay is going to his respite centre in Guildford and will enjoy that as he loves it and they have lots of fun things to do like arts and crafts, computers, play stations, out door fun area, and much more.

Next week we’re hoping to go to the beach then the following week we are going to the in-laws for a few days and hoping to go on days out with them too.

Thank you for the post and hope you are all well. Happy holidays to you, what ever you may be doing.

Update 7th July 2008

Macaulay has had an ok month with some ups and downs with his health but he is soldiering on as he usually does, bless him.

Macaulay has had lots of hospital appointments and dentist appointments to help see if his teeth can be straightened.

Macaulay has been to the cinema with his carer. He saw the new Hulk film, Kun Fu Panda and the new Hancock film staring Will Smith, which he enjoyed very much.

He has his sports day on Tuesday if the weather is ok and Macaulay is looking forward to the summer holidays. In August he’s spending a week in the CHASE which he enjoys too.

Thank you so much to those who sent Macaulay and his brothers and sister cards, they enjoy receiving them.

Update 6th June 2008

Macaulay has not been to well this month but is feeling much better now. He will be on Channel 5 news next Monday (10th) with his brother Grant as it is carers week. They are doing a report on young carers and he has been busy at school working hard.

Thank you for all the children’s post.

Update 14th May 2008

Macaulay is ok. He is having a few up and down days with his health, but seems to be coping. We received the results from his long test he had at GOSH and they weren’t good, they can’t re-connect his bowel at the moment as his bowel still isn’t well enough. Plus, they said if they did it now it would disturb his puberty etc so best to leave it until the bowel is 80-100% better. So, that was a bit disheartening but we are just plodding along as usual.

I hope everyone else is ok and thank you to all that have kindly sent Mac things.

Update 6th April 2008

Macaulay had a good birthday and he had lots of cards and presents. He’s happy now I’m at home after my stay in hospital. He has to stay in hospital on the 15th until the 17th for a test we have been waiting for, so fingers crossed it all goes well.

Thank you to all those who sent Mac birthday cards and letters and thank you to Julie for the present.

Update 29th February 2008

Macaulay has had an up and down month but is doing ok. He is happy as he has just been given respite in a place where he wants to go. He is still waiting to go for his test in GOSH which is getting very frustrating. He had a good half term though and enjoyed the rest.

Thank you for all his post this month.

Update 30th January 2008

Macaulay has not been feeling too well this month but is doing ok. He has to go to GOSH on Friday to have an operation on his stoma and he is hoping to go swimming as soon as he can go back in the water. He is still waiting to have his test to see what they are going to do with his bowel which is making him very frustrated.

Update 2nd January 2008

Macaulay has had a lovely Christmas. He got lots of presents from Father Christmas; he got a new playstation 2 and lots of games to play on it.

Health wise Macaulay has been well. Tomorrow he’s due to have a blood test and on Monday he’ having a small operation to correct the position of his Grommet as they have got lodged in his ear canal. They are hoping his hearing will improve after the operation but if not he may have to have his hearing aids back, as at his last hearing test he did quite badly bless him.

A big thank you to everyone who sent post and a special thank you to Julie for sending Macaulay the lovely gift.

Update 4th December 2007

Macaulay has had an up and down month and has had this horrible cold with a nasty cough. He’s still waiting for the test at Great Ormond Street and this is becoming frustrating as we don’t know what’s happening. He has been to have his hearing checked which is very bad and he’s got to have a small op done to correct his grommets and possibly have his hearing aids back.

On Monday the 10th Macaulay is going to the Crystal Palace annual Christmas Party which he is extremely excited about.

Thank you to everyone that has sent post this month.

Update 30th October 2007

Macaulay has had a up and down month. He went in to Great Ormond Street Hospital to have the test he has been waiting for, but unfortunately it didn’t go to plan as they had to insert a catheter from his nose down to his tummy and they couldn’t get the tube where they wanted it. They had to abandon the test so we are now waiting for them to redo it a different way, which we hope is soon. Macaulay is still finding it very difficult to cope with his stoma and having to be fed four hourly.

Thank you to everyone who has sent Macaulay something this month.

Update 30th September 2007

Well it’s been a busy time for us all, as we have just moved into a nice house at last!! Macaulay is very happy to be in a house now and he loves the garden as we never had before.

He has had his ups and downs with his illness and he will be going into GOSH on Friday to have a test so they can decide what they are going to do with him long term.

Macaulay has settled back into school ok and is working hard again. Macaulay is enjoying football again on Friday’s plus swimming.

Update 30th August 2007

Macaulay has had a good summer holiday with lots going on. He stayed in his respite center for 5 days and had fun there. He has had his ups and downs with his illness, but is getting through it. We are moving very soon to our new house which we are all looking forward to.

Update 4th August 2007

Macaulay has been in hospital this month to have his feeding tube put back in as when i went to change it i couldn’t put the new one in. He has had an up and down month with his illness but is staying strong. He is going to his respite centre for 5 days which he is looking forward to. He is still waiting to go to GOSH for his test but at the moment the machine has broken.

We are moving soon as the flat we are in has been leaking so we have now got a house which is being all done up for us. We should be in there in a month and it will be great for us all.

Thanks to everyone who sends me cards and letters.

Update 1st July 2007

Macaulay has had his up and down days this month. He has been to his respite centre this weekend which he loves. He has his sports day coming up which should be great if the weather is good. He has got a carer now who has him once a week for 3 hrs who does lots of fun things with him.

Thank to everyone who sent me post and thanks to Julie for my WWE kit.

Update 4th June 2007

Macaulay has had an up and down month again. He has been very busy too – he went to see the new spiderman film which he loved. He is still waiting to go into hospital to have his test. This weekend he has been at my mother in laws and he has great fun there. He played in the garden and went out for a meal – he really loved it and had lots of fun.

Thank you to everyone for my cards and letters as I enjoy receiving them.

Update 1st May 2007

Macaulay has had an up and down month with his illness. We are still waiting to go in for his test. His baby brother was in hospital with pneumonia but is better now. He went to his respite centre for the weekend and had fun. Thank you all for sending Macaulay cards/letters, he enjoys receiving them.

Update 31st March 2007

Macaulay has had an up and down month with his health. He has had a few obstructions which give him an awful lot of pain and discomfort but he seems to be well again now. Macaulay is still waiting for a test to be done at Great Ormond Street. They did have a date but there was no bed so we are still waiting.

He had his 12th birthday this month and got lots of lovely cards and presents. He was also in a competition with his school this month and they came 4th which was great!

Thank you to everyone for all my lovely cards and gifts. Thank you also to Julie for the notes and messages, as they make him smile.

Update 2nd March 2007

Macaulay has had an up and down month and we are still waiting to have his test to see what they are going to do with him.

He has been getting very angry lately as on a sad note, his great granddad past away on Monday, which is a great loss to the family as he was a much loved member.

Macaulay is still not copping very well with his stoma bag, it has come off every day this week and made his skin very sore. Thank you to all that send cards to Macaulay, it makes him happy receiving them.

Update 8th February 2007

Macaulay has had some ups and downs with his health and he has started counseling at GOSH to help him cope with his illness which is great.

He is still waiting to go in GOSH to have a test so they can make up their minds in what they are going to do with him and we are also trying to get a shower fitted to make it easier for him.

Thank you for all his post.

Update 30th December 2006

Macaulay has not been feeling too well lately but is feeling a bit better now. He has a busy new year with hospital appointments and its crunch time to see if his bowel is better so they can rejoin it, but his doctor does not hold out hope that they can.

Thank you to everyone who sent me a card and to Sue for the lovely Christmas presents.

Update 30th November 2006

Macaulay has not been feeling very well lately because of his pseudo. He has a busy december with appointments and on the 7th he has to go in to hospital to have his feeding tube changed because he has not been getting on with it. On the 19th he has two appointments at GOSH.