Lennon R

28 June 2011

Story written 2010

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

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

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

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

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

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

Update 15th April 2013

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

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

Update 23rd April 2012

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

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

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

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

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

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

Update 18th January 2012

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

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

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

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

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

Update 19th November 2011

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

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

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

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

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

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

Update 7th September 2011

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

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

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

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

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

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

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

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

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

Update 6th February 2011

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

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

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

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

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

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

Update 19th December 2010

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

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

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

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

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

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

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

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

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

Update 27th October 2010

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

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

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

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

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

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

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

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

Update 6th September 2010

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

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

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

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

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

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

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

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

Update 24th August 2010

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

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Amy P

23 June 2011

Story written 2004

Amy was diagnosed with Blackfan Diamond Anaemia at 28 days, after being born a month early and having had a HB level of only 3.4. After a blood transfusion given only hours after her birthday, her doctors hoped this was because of a tear in my placenta, but her HB started to drop again and after numerous tests was sent to Birmingham Children’s hospital and was diagnosed after a Bone Marrow test was completed. Amy’s condition is not just present at birth, it can be up to a year after until diagnosis is made. Amy was given steroids but this failed to kick start her red cells so she is dependent on transfusions every 4-5 weeks. Her first 2 years were extremely bad as she had no immune system and the slightest cold had her back in hospital with dramatically low HB levels and anaemic fevers. She has Chelaton therapy for 8 hours a night (she cannot use up her red cells so they lodge in her organs and can eventually damage them if not given Cheleton Therapy to get rid of them). She also has a Vascaport which is used for her transfusions and she is due in hospital for a replacement vascaport sometime soon (in a waiting list as we speak). Amy has a slight behavioural problem as she is not used to interactions (or doesn’t know how to) with children as she is constantly surrounded by adults who have their entire life revolved around her. Amy is a bright, happy, strong-willed and funny child, with a wonderful smile and a hug for anyone (even people she doesn’t know!)

Update 7th October 2013

Amy is now moving on from Post Pals, thank you to everyone who has supported her and her siblings over the years she has been a Post Pals.

Update 14th November 2012

We have just been granted power of attorney over Amy’s money issues as she finds things like this too hard to manage, so we can sort all her finances now and she can just get on with learning and building up her confidence. We are applying for a key worker to help build up her confidence away from home as she relies on me for everything even down to telling her to clean her teeth! She will also have to learn to be independent on the buses too as she has to go to college in September, so is losing her safety bubble and this is terrifying her to the extreme now. Health wise she is as well as can be expected for a child dependent on transfusions and we are awaiting a bone density scan as she is in the high bracket for osteoporosis so this is being double checked. We’ve also just found out children on chelation treatment can become vitamin d deficient as Amy has been for the past year. This is all being closely monitored now. Thanks to all who sent mail this month, the children are always happy checking the post.

Update 28th September 2012

We had a wonderful holiday in France and the kids loved it. Amy got to ride a horse and all came back with lovely tans as the weather was around 30 degrees every day. It was so lovely that we’re going back again next year, but to another part of France this time. Amy’s ADHD meds have been raised and this seems to be working. She has just undertaken an intense 3 week course to add 2 B’s to her GCSEs. Transfusions are all back to normal now and Amy is in her last year at school. We’re waiting to see what the consultant has to say to us in November, as after last time he suggested dealing with Amy’s fast dropping HB levels by having a transplant – we refuse to put her through that when she s so healthy!! The kids would like to say thank you for all the post they have received. They check the post every day and even Cody now asks if it is for him!

Update 8th July 2012

Amy has just found out her consultant is leaving next year, and other changes in her life are unsettling her at the moment, so she is a little down right now. We are trying to get her HB levels back up to what they were before the forced aneamia and this is going slowly. It has affected Amy this month as she missed a week of school because she was having extremely bad headaches and feeling more tired than usual. We are also getting Amy’s adhd changed and counseling sorted at the end of the month, as school are seeing bad behavior come back. We think her sudden growth spurt is effecting her levels of medication working correctly. Thanks to everyone who sent mail this month, the children always happily check the post.

Update 15th March 2012

Amy’s consultant recently decided to try forced anaemia. This basically means they kept her in an anaemic state to see if her bone marrow would start producing red cells, as this has happened to children going through puberty. We gave it a try for 2 months and nothing happened – she was ill over the 2 months as her red cells dropped faster than they expected and so we are now back on usual transfusions. Amy is on her work experience this week and has decided she would defiantly like to work as a nursery assistant and loves every minute of real work! I’m very happy with her boost of confidence as she has very little confidence in the world outside her school and home. I’m hoping this will make her realize not everyone is nasty because she is different! Thank you for the post, the children loved their books and every time Cody gets mail he asks me if it is another book.

Update 19th November 2011

Amy is doing well and her consultant is extremely pleased with her progress. She is doing very well at school too. We are running around with not just Amy, but her baby brother with medical problems at the moment too, so I’m a very tired mum. The kids asked me to pass on their thanks for all the cards and gifts and the balloons also went down well! Thank you to all the posties and Post Pals too.

Update 5th September 2011

Amy had a great time in France, the weather was wonderful for us and the staff on site were wonderful and friendly. Amy was a little reluctant to use French and it’s the first time we have seen her shy when it comes to talking to someone. The journey was 8 hours to get there and Amy realised she hasn’t got sea legs on the ferry. We loved France so much we are planning on going there again as we had no problems and know if we do the staff are very happy to help us out. A huge thank you from the children for the huge craft pack they received, it has all been used up and even Cody had a good time sticking all day!!

Update 9th August 2011

Amy is doing well at school, though socially she is still isolated and never goes out the door unless I can get to pop to the shops. We are trying to get her to see she will be safe outside the house but she is afraid if she goes out she will be picked on. This hasn’t happened though. We are going to France this weekend and this will be the children’s first trip abroad via a boat. We have been too afraid to take Amy before but are now ready to try, all armed with medicines and letters galore. Next year it’s the first plane journey as their aunt is marrying abroad. We would like to thank everyone for Kyle’s post for his birthday as he loved them all. Amy sends on her thanks for all her post this month too.

Update 8th June 2011

Amy is doing really well at the moment. There was talk of a bone marrow transplant but she decided against it as she and we are happy with her health and care at this time, and we’re wary of the dangers of a transplant. Her scans for her suspected deep infection in her ears was clear so we are back to square one yet again. Amy is doing fine on her ADHD treatment and her weight loss has slowed down. School is happy with her behavior at the present time and she is still enjoying school.

Update 28th February 2011

Amy is doing well and her health at the moment is excellent. Her iron levels are at an all time low though. Transfusions are still every 4 weeks and her vascaport is working really well. She is now on pump when she has her blood and that means we get out before 9pm every time we go.Amy is doing excellent in school, her teachers are really pleased and her grades have gone up ten fold which we are happy about. She is due for surgery again this year as it looks like she had a deep infection in both ears and this has gone on far too long and it now means surgery is the only way forward!! We are making sure it is put off until after her holiday as it means no swimming, or physical activity for 3-4 months, and it may mean more than one surgery as well. We are having a ct scan next week to check what is going on and then see another consultant to decide where and when surgery will happen. Amy is also 14 this year – growing up fast now! I’d like to say a big thank you for all the children’s postie as they love waiting for the post to come.

Update 25th November 2010

Amy is doing well with her health at the moment which is excellent but her iron levels are at an all time low. Transfusions are still every 4 weeks but with a review on how much next visit. We have a small problem with too much weight loss due to her adhd tablets, so a break from them may be in order, but I am hoping the Christmas break and eating lots of stuff that’s really bad for you will pile on some weight, plus a 2 week medication break we have planned. Counselling has now finished for Amy for now as we seem to go round and round over the same stupid things, so we decided to stop as it wasn’t really doing any good. The only good thing really is the fact they diagnosed Amy’s ADHD and got her moved to another school for children with medical problems and social problems etc. So we will stroll along and hope for the best now I think. I would like to say thank you for all the cards and gifts the children received, especially the chocolate!

Update 6th September 2010

Amy is doing well with her health at the moment and transfusions are going well. She has just started back at school after a long 6 weeks – she needs her routine back as boredom has definitely set in. Counselling sessions are still going on until the near future to help her deal with the problems she has. Thank you for Amy’s post and for her heart pillow, she loved it.

Update 21st May 2010

Amy is really enjoying her new school and is now inviting her friends over which is good for her as they also have some of the problems Amy has to face too. It’s nice to see her making real friends. At the moment we are having a huge problem with transfusions and are waiting to see her consultant next week as to why it’s taking so long for surgery as we are really struggling to find access to decent veins now. We know every time she goes for blood she is going to have major trouble for access which is very upsetting for Amy even though her nurses are really good with her and wait for her before they retry anything. It’s still up setting both for her and us though. Amy is enjoying after school club and socializing at school and is having some speech therapy to help her understand words and how to speak to people etc. The school is very good with the extra help she needs and it seems to be slowly working. A very special thank you to Paul who got a signed picture of Zac Efron for Amy. It’s now going in a frame in her room. Thank you so much, it was such a kind gesture.

Update 24th March 2010

Amy is really enjoying her new school and has settled in nicely and is making friends now to our delight. She is a complete change from the depressed little girl we had for years. It’s such a joy to see her excitedly waiting for the taxi and running out to meet the driver. She has joined in after school bowling and is really doing well; it’s such a relief for us. She is still waiting for surgery and having problems getting lines still but we’re still waiting for that call or letter!! Health-wise she is doing really well though. We have just celebrated Cody’s first birthday and we can’t believe its been a year already. So much has happened with Amy it seems the year has flown by. Amy is still receiving counseling and this will be a long term thing, but her counselor is pleased with her change of mood and her bounce has come back which they have never seen before, so that’s really good for us all. Amy is getting help with her dyspraxia at school and her aim is to learn to ride a big bike safely so she can have one for Christmas. She is also learning to use a laptop as writing is a major issue for Amy at school and she tends to avoid anything to do with writing and is still trying to learn the basics on a pc (hence why no reply to emails as she gets stuck with what to do and how to write back).

Update 9th March 2010

Amy is doing very well in school and has settled in nicely. She is a lot happier now and more excited about school. We’re still waiting for surgery and having problems finding lines for transfusions at the moment. Amy is still in counseling so she has some other outlet for her emotions and problems and this will be a long term thing for her.

Update 1st February 2010

Amy started at the new school today. We had a home visit last week and then went to visit on Thursday and were offered a place straight away. Amy is very happy to be starting and hopefully will get all the help she needs now. Fingers crossed home life will become calmer now she is happier too.

Update 12th January 2010

We have a meeting about Amy’s referral and we have been told Amy has a good chance of getting in on her medical and social problems and we just have to go before the panel now. We’re playing the waiting game again, but if no success this time, we have informed everyone she will be home schooled for definite. We can’t put her through the constant agony of forcing her to go to school, so would rather take out that problem totally for her own mental well being. A huge thank you to all elves this year, the children are in the process of writing thank you cards to the addresses they had.

Update 16th December 2009

Amy is at last being referred to a special needs centre for either extra support or a change of schools that can cope with her needs. We are awaiting a meeting to sort out what happens next and what goes into the referral. She is coping at the moment but is still unable to cope socially or with the fact she has been placed in lower groups and too many distractions from other children. She’s a very unhappy little bunny at the moment and is fed up of waiting for things to be done faster. We are still having counseling to help her and the family cope with her ADHD and school. Fingers crossed Amy will be moved, but if not, home schooling is our next avenue. Thank you to all that have sent Christmas presents, they are all under the tree waiting for Christmas day. May I wish all the other families a very merry Christmas and a good New Year.

Update 14th October 2009

Amy is doing well in school and the medication she is on for her ADHD is working well. She is still on transfusions every 4 weeks. This is going well even though there are problems finding a vein for transfusions and we are currently on 3 units a month.

Update 31st August 2009

Amy is doing well on her ADHD meds and her transfusions are going well every 4 weeks still. We’re just waiting for some more tests for concentration and to see what results are found to help her at school!

Update 18th August 2009

Amy has just been diagnosed with ADHD. After 10 years she is now on medication and life is a lot easier for her at the moment. She understands now what has been happening and is very happy to have a name for it instead of thinking it was her that was the problem. She is still in therapy to help her cope with everything she goes through and sharing her feelings with someone other than us seems to be helping her. Amy has also lost over a stone in weight since starting her medication, which for her is wonderful and makes up for not being able to eat herself silly! A much happier little girl!

Update 4th May 2009

Amy is doing well this month, apart from finding a vein for her transfusions which is proving a little difficult. She is doing fairly well at school although is still not happy being at her present school. We are proud to announce the arrival of Cody Alan Giles on the 23rd of April. He was delivered by C-Section at 10.07 and weighed a healthy 8lbs 6oz and is doing well. The children are over the moon and buzzing around him all day. A big thank you to Julie Barrat who sends regular cards and letters to all the children.

Update 1st April 2009

Amy is ok this month. She is doing fine at school despite the problems she is having, we’re hoping to try extra support and see what happens. She is still receiving counseling and is doing well at each session. She is now looking forward to her baby brother arriving on the 23rd of April and 2 weeks of Easter holidays. A big thank you to Julie Barrat who sends regular cards and letters to all the children.

Update 24th February 2009

Amy had her port removed on Monday and all went well. She came home an hour and a half after she woke up and was asking for food as soon as she got on the ward. She is in a bit of pain but has done really well this time and there were no complications. We are now using the veins she has that are working well for about a year. We hope to give her a break from ports and more surgery. Amy is still receiving counseling and we are trying to move her to a special school for her emotional and behavioral problems, but as usual, it takes time. She is a very unhappy girl and hates school. On the bright side, transfusions are every 4 weeks and her iron levels are low, so health wise things are going smoothly at the moment.

Update 31st December 2008

Thank you to the children’s elves for their elf boxes this Christmas.

Update 14th November 2008

Amy is being assessed at school for extra help and is finding it a little difficult there at the moment. As you can imagine, lots of telling off and lack of new friends is making her feel a little lonely and down, as she isn’t as grown up as her peers. Due to her dyspraxia she is also feeling down. Amy has been referred for some counseling with the rest of the family due to all the pressures and to help her and us deal with it a lot better. She is due to see her consultant next week to decide on whether to remove her unusable port for good or get it replaced. We are hoping to give her a break for the time being and see if this improves her behavior too. We are pleased to announce that a new member to the household will be here in May and Amy is hoping for a new baby sister, so fingers crossed she gets her wish this time. A big thank you to Julie Barrat for letters to all the children.

Update 5th August 2008

Things are ok with Amy at the moment. She is under occupational therapy to help us out with her dyspraxia. She did really well in her sats and she did better than her teacher expected her to do. She received a progress shield from school for all her hard work and the effort she put in since Christmas which was nice as she has had such a hard time at school.

Update 27th May 2008

Amy is having problems with her port at the moment as access is a nightmare. We are waiting for 6 months and if problems still arise then she will have the port out (more surgery!) and a break so she can just have canullas in to save having double surgery yet again, as she had a hard time of it last surgery. We have just been told her little brother could also have dyspraxia, but probably a milder form, so we’re in the process of changing schools to save all the problems we have had with his sister in the same school. So it’s double the trouble for mum and dad now!

Update 4th April 2008

Amy is having problems with her port access at the moment and having a full transfusion through it is a nightmare. Cannulised every time through the back of her hand, we’re hoping she wont need a another port yet, as hers is only 3 years old and her last one lasted 5 years. School problems are still a nightmare and she is now having another set of assessments done in her new school which will put her back with coursework as her junior school didn’t bother and just labeled her the naughty child, not the child who has dyspraxia! We are so dreading senior school, they are trying their best to set things in place for her for her first term, and this is the most help we have had in years thank goodness! We had lots of Easter cards for all the kids, plus valentine’s cards too. We also had lots of things for the boys and they loved it, so thank you for everything.

Update 30th January 2008

Amy has been diagnosed with learning disabilities as well as dyspraxia, so we now have to fight the education board for help yet again. The only thing in place is the fact she gets extra time in her SATs which helps. Her new medication is working well, fingers crossed, but she has had a slight glitch in her liver results so we’re praying it isn’t affecting her liver, otherwise its back on the pump if it is! Apart from that, she is doing well and is on the mend programme for kids to help get her moving and lose some weight and she loves it!

Update 19th December 2007

Amy has had so many appointments this month to sort out how we address her behaviour as she is now under the learning difficulties label. We don’t think anything will be sorted until senior school which doesn’t help her or our sanity, but what can you do! On a lighter note, her health is great and her new meds are working great, the only problem we have is port access – every transfusion we have to pin her down and try to get in a needle at the moment and she isn’t easy to pin down now she is getting bigger! We wish everyone at Post Pals a great Christmas and New Year and thank you for all the parcels and cards!

Update 1st October 2007

Amy is having OT appointments at the moment and is being referred for behaviour therapy too as she is having a lot of emotional difficulty due to her illness. This is a major problem at the moment and is a very difficult time for all the family. Health wise she is good and is now being bumped up to 4 units a month as she is getting bigger and the transfusions are not lasting as long. Her chelation therapy is working well and she is now being put onto a new drug that saves her having to use her sub cut pumps at night, so we are keeping our fingers crossed that this works for her, if not it means going back onto the sub-cut pumps again. Thanks to everyone who regularly sends cards and letters to Amy and a big thanks for the lads cards and small packages they love them too.

Update 27th March 2007

Sorry I haven’t written for a while but I have been busy with appointments and organizing our annual conference for families. Amy has had a good 6 months regarding school, although we had a set back last week with her behaviour and so will have to see how she responds to the way we are trying to correct things. We’re still waiting for her to be assessed for dyspraxia but as we have been waiting almost a year we are plodding along as best as we can. Health wise, she is fine and her treatment is working well. She is very healthy and happy at the moment. Thanks to everyone who regularly sends cards and letters to Amy and also for the cards and small packages that arrive for the boys.

Update 13th June 2006

Amy is being tested for ADHD as she is being so disruptive at school. She has also been bumped up to a lovely batch of 3 units of blood every month now as she was running way too low and we could tell!! (It’s going to be long days or nights for us now). Some good news is that her iron count is low at the moment. Apart from that she is fine, though the hot weather is hitting her hard this year so she has not been able to play outside for long in this extreme heat. Thanks to Katie for the cards etc they are still being kept on view in the living room and her box is full now so time for a sort out of old cards and letters I think.

Update 13th April 2006

Amy had bad news when we went to see her doctor; he told her it will be another few months before she can come off her sub-cut pump (we are not holding our breaths for her to come off it at all) so needless to say she was upset!! She has finished her sessions for her behaviour at home, as she has settled back down again thank goodness. School wise she is under the educational psychologist, who is monitoring her, but she has been really good for the past week and a half … it’s surprising what a lack of chocolate and biscuits can achieve!!! She is getting more stars on her chart and asks can someone send her some heart stickers so she can use them on her chart as she is running low on hearts and stars!! Health wise she is still ok – up every 4 weeks for blood transfusions but we are on 2 bags one month then 3 the next to keep her topped up nicely. Everything else is ok at the moment (fingers kept crossed). Her little brother has suffered some anemia but I am constantly assured it’s not DBA so we have another appointment to see Amy’s doctor for her and Kyle in the summer to check up on them both.

Update 2nd March 2006

Amy is just starting a few sessions to find out what the problem that’s causing her behaviour problems is. She settled for a bit, but has suddenly restarted her bad behaviour at school again, so we have to wait a while until she has done a few more sessions to find out the cause. Amy is due to find out tomorrow if she can reduce or stop her sub cut pump as the oral treatment she is also on is working well at the moment. Thanks again to everyone who has sent her mail.

Update 29th January 2006

Amy’s health is great at the moment but her behaviour is being looked into as she is having a few problems at home and school. I will update again when we know what is going on. Thanks to everyone for the many cards from all over the world she’s received this year. Thank you also to the class of children in Japan. Big thanks to Jennie and friends for the big postie box sent at Christmas – it took an hour to open and Amy was delighted with all the gifts.  Thanks to everyone who sent all the kids a small present, they loved them. Great pleasure is seen on the kid’s faces when they get a card or letter and even stickers – a small thing such as that is loved too.

Update October 2005

Amy is in good health at the moment, we have had so many appointments all in one go we have had to run around everywhere almost every week for one thing and another. Amy also had a liver biopsy and was a great little patient was up and asking for food within 5 mins of waking up and was home the same day. The only problem we had was keeping her from jumping and running around the house for a week after, because she felt fine she couldn’t understand why she had to be calm. So a good few months, plenty of letters, and still getting postcards too. Her oldest brother has a new post pal who he is writing to, even if it is a girl! Oh lads – you have to love them!

Update May 1st 2005

Amy is fine at the moment and is in good health apart from the odd cold and ear infection. She is due a transfusion in 2 weeks time. The kids are loving being on Post Pals, especially Amy. The lads also had some stickers from Sue which made their day.

Update 1st April 2005

Amy is fine at the moment, wasn’t well last month had a really bad ear infection for 4 weeks, but is ok now and back to normal.

Update 17th January 2005

Amy’s hospital ruined her first port access and I had to take her home before they used her as a human pin cushion again. She had her blood (although being 1 unit short) today on the outpatients ward. She had her friend Mikey come to stay over the weekend who also has DBA.

Update 31st December 2004

LOTS of great cards this month which made Amy very happy. She was waiting for post every day and was not disappointed. It made her Christmas to know people out there online do care and take notice of things posted on there. Amy has had her operation to have her port replaced and is doing well. It only took her a week to get over the operation and she is running around like nothing happened. She is due to use her new port in 2 weeks so hopefully it will make transfusions easier and shorter. She is now staying overnight in hospital for transfusions as she is having more units so it takes around 10 hours to do. She is in good health at the moment which is always a bonus, no illness for 6 months now so her immune system is a.o.k! Hope it stays that way.

Update 22nd December 2004

Amy went in for her vascaport replacement on Monday (too near Christmas but it had to be done). She did extremely well had the anesthetist in stitches and wasn’t scared at all. She was in a lot of pain on Monday when she came back from theatre, but we got home at around 7pm that night. Her first couple of days have been quite bad, but today she seems to be back to her old self and is smiling again and playing with her toys. We went out the house for about 20 mins today which was a bad idea because it wore her out too much. She has 2 weeks of no showers, which for a kid is a bonus! She will have a vascaport that now works for transfusions and as she had a transfusion on Friday night she will last out now till the New Year and we will see how well this new port now works. All my thanks to everyone who is sending cards and parcels she is very excited and knows every day she will get mail. She gets more than us now and has a whole door full of cards from post pals friends. It has brightened up her day and even more so when our neighbour sent round a parcel the postman had delivered on Monday so that made her smile.

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