Adam W's Parents/Guardians

Katy and Paul

Adam W's Siblings

Hannah 06/04/2009 Loves animals (especially dogs, frogs and butterflies), fairies, pricesses, dancing and singing. ABC and numbers, Charlie and Lola, Postman Pat, Muppets and Zingzillas. Hannah likes receiving postcards and pictures.

Adam W's Interests

Postman Pat, Mr Men, Shaun the Sheep, Doctor Who, Star Wars, Pixar films (especially Toy Story and Cars). Arty. messy stuff. Fish and dinosaurs. Rugby (England and Newcastle Falcons). Listening to stories and music and being read to. Adam enjoys receiving letters with funny stories and pictures.

Adam W's Favourite Colour

Orange

Is Adam W able to read?

No

Is Adam W able to use hands?

No

Is Adam W visually/hearing impaired?

Yes

Does Adam W suffer from any developmental delay?

Yes

Story written 2010

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

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

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

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

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

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

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

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

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

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

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

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

Update 8th August 2011

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

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

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

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

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

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

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

Update 11th July 2011

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

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

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

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

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

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

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

Update 16th May 2011

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

Update 11th May 2011

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

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

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

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

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

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

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

Update 1st March 2011

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

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

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

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

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

Update 28th January 2011

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

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

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

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

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

Update 10th January 2011

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

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

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

Update 7th November 2010

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

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

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

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

Update 1st October 2010

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

After a few anxious days, we were told he would pull through, and although he was ventilated for a total of 10 days, made a characteristically quick recovery. He is now home, and awaiting appointments for follow ups from ENT and gastro surgeons, who think they can help with his breathing problems (the ENT doctor called his tonsils