Story written 2005

Alex was born very big (9lb 12oz) and full term but was very ill and rushed to neonatal intensive care. He stayed there for 9 weeks and was quite a mystery to the doctors. He was diagnosed with Hypothyroidism but this did not explain his oxygen dependency. He also got pneumonia.

He gradually improved but once home his parents knew there was another problem, as he was very floppy and developmentally delayed. He couldn’t hold his head up until 6 months or sit unaided until he was 2. He still doesn’t have an official diagnosed but he is described as having a type of Dystonic Cerebral Palsy. He also has food intolerances. Ear tendencies and eczema which used to very severe.

Alex is a very happy, loving social boy but whose social abilities are his main strength. He now goes to mainstream school with one to one support. He is learning lots of new words and uses makaton (A type of sign language). He gets around by crawling and tries to stand and walk holding onto things. He is very clumsy and uncoordinated so bumps and bruises himself a lot. He wears a protective helmet when playing.

Story update January 2008

Alex still doesn’t have an official diagnosis but he is described as having a type of Dystonic Cerebral Palsy or sometimes as having an “asymmetrical four limb motor disorder” as well as global developmental delay. He also has food intolerances eczema which used to very severe. His food intolerances and eczema are less so now, but still flare up occasionally. Happily, he seems to have totally grown out of his glue ear tendencies and now passes his hearing tests even though he no longer has grommets!

Unfortunately, as Alex has got older, his frustration has resulted in quite a lot of difficult behaviour which makes him extremely hard work and need constant one-to-one attention despite his physical progress. He got a diagnosis of ADHD in 2007 and he also seems to have some autistic tendencies. At the time of writing, he still has no MAIN diagnosis but the list of “lesser diagnoses” grows all the time! He has done very well in a mainstream school up to now (with constant one-to-one assistance) but we are now looking towards special education as we think this will better address his needs as the curriculum will be based more around teaching him practical skills and self control as well as academic skills, which we feel is what he needs and will help he frustration/behaviour.

Update 20th June 2009

Alex has just celebrated his ninth birthday! We didn’t know if he was going to be better for his birthday as he’d been poorly with a really sore throat which was caused by mouth ulcers in the throat (ouch!) and also some on his tongue. It was agony for him to eat and he was not a happy bunny because he does so love to eat! Anyway, he’s on the mend now and was back to school for his birthday on Thursday and really enjoyed all the attention.

We (mum and dad) clubbed together and got him a sandpit for the garden and toys to go in it. Big brother Jordan gave him some money and sister Jess got him the first season of The Sarah Jane Adventures on dvd which he loves. It’s the only non pre school TV that he’ll watch avidly! He also got Pingu and Pepper Pig dvds which are still firm favourites, although Peppa Pig may go missing shortly, as Jordan, aged almost seventeen and with no intellectual special needs at all, LOVES Peppa Pig… actually so do I!!

Alex would like to say a very big thank you for his birthday posty which included cards from Karen and one from Jenny Orpwood, both of which were lovely Bob cards. Wendy also made him a gorgeous card and Debbie sent him a great card and lovely presents for both him and Jess which they loved! THANK YOU so much!

Apologies for the late update but I have just started work and it’s the first time I have been a working mum of 3 (well, at least working this many hours) and everything is going a bit pear shaped! Please bear with me.

We are all going to the zoo tomorrow which is Alex’s birthday treat instead of a party this year, so I’ll update you on that next time.

Update 5th May 2009

Alex has had a very good month, making lots of good physical progress and with a little less objectionable behaviour for us to contend with! He is loving being able to get outside now the weather is being a bit more reliable and I have started to get brave and take him and Molly the dog out together on my own, hanging onto both the lead and the wheelchair whilst managing, most of the time, to keep an eye on Alex’s hands to check he’s not about to release himself and walk off (wobbly fashion) the way he is prone to, even crossing roads which is very scary! Molly pulls quite a lot but I have found she will walk alongside the wheelchair quite calmly. I’d like to say this is because of her sixth sense she seems to have where Alex is concerned, but I think it’s more to do with worrying about getting her paws run over by my dodgy “driving” (of wheelchair!).

Alex adores Molly and getting her has been the best things I have done in years. I would urge anyone dithering over getting a dog for their child or children, particularly for an ill or disabled child, to consider a Labrador. Although you should never trust a dog 100%, the lab really is one of the best breeds around for children. Molly doesn’t seem to have an aggressive bone in her body and is so much part of the family that it doesn’t seem possible we’ve only had her 5 months. The kids and I (and indeed their dad when visiting) are all potty over her and make up stupid songs about her daily which Alex finds hilarious and joins in with whilst Molly just looks at us with her liquid brown eyes as if to say “you are all quite mad but I love you!”.

Alex is really making good progress in the water at his weekly swimming session and can “swim” in a fashion, with just armbands. He is also having hydrotherapy at school so is getting the benefit of the water twice a week most weeks.

Thank you so much to Benedicte (Tom S’s mum) for a fantastic Moonpig postcard showing Loveheart sweets on the front that had got all three kids’ names on. Alex on one and Jordan and Jessica on another! I am going to frame it… it’s brilliant! Jess was very impressed indeed!

Update 31st March 2009

Alex has yet another cold/cough at the moment that has come with a temperature and is making him feel a little under the weather, but he’s not too bad and has managed to get up to mischief today, even though he had a day off school. Big brother Jordan has just put up a new trampoline in the garden for him now that the weather is better, which is also fun for Jess and good for Jordan’s chest (as he has CF) even though Jordan seems to consider himself a bit too old for bouncing on trampolines these days!

Alex has lots of exciting things going on at school lately largely due to having had a long awaited CAT (Computer Aided Technology) assessment. He is now having lots of new equipment introduced to him to help him organize and record his ideas in lessons. We are also going to get some switches installed for him at home, which will mean he can switch on his own DVDs and music in his bedroom. We are hoping this will help with frustration and challenging behaviour because he will then be able to do things for himself that he has previously had to rely on others to do for him.

We have also been getting lots more input about Alex’s many sensory needs which we have long suspected but not understood very well until recently. Input from the Challenging Behaviour team and a comprehensive assessment from a great OT from this team has helped us realize how Alex can go into “sensory overload” when his brain is trying to make sense of lots of input. Even getting lots of positive one-to-one attention can sometimes result in negative behaviour from him when it all becomes too much and he goes into “overload”. Alex’s new lycra bodysuit that he now wears under his clothes, helps with his sensory issues and also with trunk stability. This suit is helping him to walk unaided some of the time (amazing achievement for Alex!) and also helping with negative behaviour as he is less frustrated than before because he is finding that he can do things he couldn’t before. He also thinks he looks rather like Sportacus in it which he approves of greatly as he is a big Lazy Town fan!

Alex now belongs to the same swimming club as Jordan and Jessica and although they can’t provide the one-to-one tuition he would need in order to receive proper coaching like the others, he does get an hour of pool time a week with just him and me and/or his dad playing in the baby pool. He is starting to get quite confident in the water and can float on his back with just arm bands for short spaces of time.

Alex still loves our black Labrador Molly (“Moo-Moo”) and the better weather is meaning he can help us take her out more often as there is not as much mud for his wheelchair to get stuck in!

Thank you for the fab brown teddies that Alex and Jessica have received this month – they both really love them. Also for the washcloth bunny kits from Jane and the brilliant finger puppets from Kim. They are fantastic.

Update 12th March 2009

Alex has been poorly with a nasty chest and throat infection, the type that hasn’t troubled him for a couple of years. This is the first lot of antibiotics he’s needed to have this past winter so that’s an indicator of how robust he’s become! He was running some scary temperatures and his respiratory rate was very high for a while but he’s much better now, and although a little tired and pale, he went back to school yesterday and was fine.

Alex has a new skill which we are very proud of and so is he! He has learned to get to his feet, from being on the floor, COMPLETELY UNAIDED! It is amazing to see him do it… he is like a very wobbly crane stretching slowly upwards, but when he gets there he has a huge smile on his face and waits for applause… which he always gets!

Alex is causing big problems with his escapologist tendencies… he can escape from anything, but in particular his wheelchair and car seat. Even a Crelling Houdini Harness is not proving suitable as some models he can escape from (!) and the most recent we have trialled won’t fit in the school bus so we can’t have it! It’s a big worry because he needs to be safe in the car so he doesn’t cause an accident by hanging on the back of the driver (usually me!).

Thank you for the wonderful, fantastic handmade “cuddle cushion” for Alex, with Thomas the Tank Engine on one side and cross stitches of cats on the other. He isn’t home from school yet but I can’t wait to give it to him when he gets home… it is wonderful and he’s going to love it. I was bowled over when it arrived… how brilliant that some great people have made him such a special gift. It was made by SOLAK, Stitch Of Love and Kindness (www.stitchesofloveandkindness) and I have emailed them a personal thank you as well. They are a terrific organisation.

Update 29th January 2009

Alex is very well, very happy and getting bigger and stronger all the time. We recently saw the geneticists (finally) to discuss the chromosome deletion (the cause of all his problems) that he was diagnosed with last June but we had already found out most of the info on our own.

It’s been an up and down few months as Alex/Jessica’s dad and I split up last September and he moved out in October. Alex doesn’t understand this and there’s no real way to explain it because he sees Daddy lots still, most days, so when he’s not here Alex just thinks he’s ‘out’. He does ask for him every morning though which is quite hard. I just tell him he’ll see him later and that’s usually enough. Mark is still sharing the care of Alex who is very hard work. He is hoping to get somewhere better to live and slightly closer by soon which will be better for the kids.

Poor Jess has suffered the most. She is ten and right in the middle of it all. She’s too young for us to give her complicated explanations, but old enough to be very upset by the split. She’s coping better now though; still gets a bit tearful – but has been cheered up a great deal by the lovely posty that has come lately.

We spent Christmas altogether as a family which went well and was nice for the children. Things are a bit easier now; we do some family stuff altogether and the kids are able to see us getting on as friends which is better for everybody.

Molly the Labrador joined our family in early December and she is the best thing to have happened to us in a long time! She is the most wonderful natured black lab in the world. She’s 4 years old and a rescue dog. She is fantastic with Alex and extra patient with him as if she KNOWS that he’s ‘extra special’ and even when he is a little rough with her she never as much as growls. He has just been to respite for 4 days and she searched everywhere for him and licked him half to death when he arrived back after school today!

Please would you excuse my lack of updates in recent months. I have tried to send as many personal thank you’s as possible, as you are all so kind and deserve to be thanked, but if you have sent the children something and not been thanked, please understand, your posty is SO much appreciated – the children love it – their mother is just too stressed and frazzled to stay on top of the ‘paperwork’ some of the time. Although I’m trying to catch up, as you can see! But really, a million thank you’s to all. You are wonderful!

Update 1st November 2008

Alex has settled really well into his new school which is a special school and we are very impressed by the family support offered. They have already got him completely sussed which became obvious at a recent parents evening when they told us about how bright they have realised he is (in his own way) and informed us of the places they have had to fish his glasses out of (the drain being but one!) and how quick he is at undoing straps, buckles and belts!

Alex is absolutely thrilled will the stickle bricks he received from Post Pals recently. We had never bought him these before but will be getting him some more as they are such a big hit and Jessica loves them too – in fact all the kids that have visited our house lately have had a go. Sometimes the old-style toys are the best!

Thank you too for a beautiful cat book that was received from overseas. I’m afraid the packaging was recycled before I wrote down the contact details (see how efficient they have become at recycling!) so I can’t give you the personal thank you that you deserve but Alex absolutely loves the pictures. I have put it away for when he is a bit older as he would (accidentally) ruin it now if it was left in his room with his other books but he can have it out when he asks, for someone else to look at with him.

Update 21st June 2008

Alex had an absolutely fab 8th birthday which, although was 3 days ago at the time of writing this, has continued through the week because tomorrow he is having a party at a local play centre and he has been counting down the ‘sleeps’ from his actual birthday to his party day.

Alex’s birthday has been particularly exciting this year as it was just a week after we have moved into our long-awaited new house. Alex now has much more space to ‘mobilise’ and has his own ground floor bedroom and adjoining shower room. His bedroom is connected to the living room via french doors and he has a whole wall of lockable storage space (wardrobes and shelving with doors) to keep his things in. It is all absolutely fantastic and worth the very long wait and all the hold ups as we should have moved in 19 months ago! I think Alex actually thinks we are on holiday and will be going back to the old house soon (heaven forbid!) The flooring to the whole downstairs in the existing house (apart from the kitchen) is very high quality laminate which was very kindly funded by the Roald Dahl Foundation and our local Lions group. We are so grateful to them because without them we would never have been able to afford this quality flooring which is the only type suitable for mobility aids/wheelchairs etc. To top it all, it looks gorgeous! We have never had such a lovely looking house!

I have been busy this week (when I really should have been trying to catch up with my studying as well as unpacking more boxes!) painting Alex’s favourite In The Night Garden characters on his bedroom walls in time for his birthday. I’ve not finished yet but so far he has Iggle Piggle, the Ninky Nonk and a partially complete Upsy Daisy on the walls. I am going to paint the Tombliboos on the doors of his cupboards, Makka Pakka next to the bathroom door, the Pontipines over the doorway and I’m not quite sure where I am going to fit the (huge!) Har Hoos but fit them I must because they are Alex’s favourites! I think I will miss out the Tittifers (birds!) because they look too hard to reproduce! If you are not familiar with In The Night Garden, you are going to think I’m talking a foreign language… but if you have a pre-schooler, or ARE a pre-schooler or an ‘Alex- type’ then you will know exactly what I am going on about! Alex doesn’t know or care that he is older than the average Night Garden fan and to be honest, I don’t blame him… I wouldn’t really mind having Iggle Piggle and friends dancing round my bedroom walls and I’m thirty-six! But I’m sure that’s just me!

Alex (and all of us, his family) would like to thank all these lovely Post Pal friends for sending “posty” which really helped to make Alex’s day special.

Helen F and family, Kate Dee (who also, as always, has sent some really wonderful posty to Alex’s sister Jessica who really looks forward to receiving it… thanks so much Kate) Julie Barrett, Hwee Hoon (lovely Thomas picture!) Claire McCartney (Alex enjoyed counting the candles) Karen Sami, Isobel, Victoria and Jenny Orpwood and her friend Trevor (Alex laughed at the cartoon cat, he’s still crazy about everything to do with cats!).

Alex also brought home cards from school from several members of staff and the WHOLE of his class who had made cards for him! Some of the cards said “Happy birthday… we will miss you…” in them, which I later found out was not because unknown to me, Alex has done something soooo bad he’s been expelled (haha! I did wonder, he is rather BAD sometimes!) but that his class had been told that he will be leaving at the end of term. This is because after 4 years in mainstream school, Alex is going to be starting special school in September. His mainstream school have been fantastic but since he’s been in the Juniors, it has become obvious that his needs would be better met in a special school environment. He has been attending his new school on a Monday (taking with him his lovely one-to-one helper, Donna, who we are all going to miss very much!) for the last couple of terms and he likes it very much.

Update 9th March 2008

A HUGE thank you to Doug, Kristie, Riley and Declan from Virginia, who sent our whole family a wonderful parcel. It contained a brilliant gadget for Jordan (an electronic spinny thing that gives a message in lights as you spin it – he spins it across the kitchen floor while he’s doing his nebuilser each evening!) a fantastic cuddly pink unicorn for Jessica which she has taken to sleeping with every night and a car and a BRILLIANT toy drum machine for Alex (he LOVES it! He can actually play it and it is improving his hand/eye coordination while he does!) They also sent a big pile of postcards of interesting places in Virginia for all of us.

It was an absolutely brilliant parcel and a complete surprise. It contained some really great, well thought out presents for the children. Thank you all again so much! It was so kind of you.

Update 3rd January 2008

Alex has really enjoyed Christmas and his new wheelchair has meant we were able to get out for a few walks (his old one was so dilapidated that we could barely use it!) He has been very hard work for us and frankly, we are looking forward to him going off to school on Friday (!) but winter holiday times are always hard. Again, it will be easier when we finally move to the new house as he will have more of his own space in the house to mobilize safely around in. It’s looking like March now for the move (a whole YEAR later then we were first told!) but as long as we get there in the end! Will keep you posted.

Alex is currently being tested for a few new genetic tests with the slim possibility of a “main diagnosis”. Next stage is for us (his parents) to go for blood tests. 

Alex is well in himself; he has shaken off the winter colds so far.

We are also looking at a move into Special School for Alex as soon as we can arrange it (which may take a little while as we have to get his statement changed first). His mainstream school have been wonderful but we think it’s time for him to move somewhere where all his needs can be more easily addressed and he can spend part of his day learning life skills rather than concentrating on a curriculum that is not really in keeping with his own “life agenda”!  

Thank you so much to Julie Barret and family for the wonderful In The Night Garden little library of books… Alex ADORES them! He likes the other lovely things you send too but the books are VERY close to his heart and they are surviving remarkably well… he seems to be being CAREFUL with them which is unheard of – Alex isn’t careful with anything!! Also, to Angela Dixon and family for the fantastic Wiggles drum that plays all his favourite tunes! His face was a delight the first time he heard it… he started frantically doing all the actions; he knew them all! I was so surprised! Jessica said to me “MUM! Didn’t you KNOW he knew all those??!” No I didn’t… Bad Mother alert… I tend to run for the hills when the Wiggles are on…! ;o) Thank you also for the reindeer cards, they where fantastic! As well as some beautiful hand made cards and big thank you’s to all the pals’ family members who send cards to other pals! You put this mother to shame… I didn’t even get cards out to all the people I know personally this year!!

Update 3rd October 2007

Alex has put us through the mill this summer! Although he is often still his lovely, cute, cheeky, huggable and kissable self, unfortunately, without warning he can put his hand out and strike you… HARD! Poor Jessica suffers a lot in this way and often gets her hair pulled. It’s a real shame as they are so close in age (and size) and she adores him… but she gets very frustrated when he hurts her, as do we.

Alex turned 7 in June. We had a party here at home for close family and friends on what was sadly a very rainy day, but everyone came! He was in his element. If there is one thing Alex loves, its attention… and it was all on him! He wasn’t a stroppy/spiteful boy that day. We think the triggers for the violence are often raised voices… and/or not having someone’s complete undivided attention. But we can’t give him that degree of attention constantly. We are a family of five after all, and equally, he strikes without a trigger on occasion. His poor dad has marks all down his face at the moment… and I, more often than not, have bruises all round the tops of my arms where he pinches.

We think this behaviour might date back to 2 years ago when he had the two massive seizures. It could be related to those… or to the meds he has been on ever since. We have discussed it with his paediatrician who was able to witness some of this behaviour in her clinic. She prescribed Melatonin to help his sleep better at night but other than that, could only advise we got more respite care from social services, which, to my mind, is not really facing the problem head on. We had refused Melatonin in the past but, mainly down to desperation, I did some research and found it to be a natural body substance that we all produce when it gets dark which tells our bodies to sleep. Apparently, blind children (which is understandable) and some children with profound learning difficulties (less easy to understand) don’t produce enough natural melatonin to have a good sleep pattern, so, for these children, the artificial form can be given to good effect.

I’d say he’s better… not fab… but we’re all (including Alex) getting a little more sleep. We have all become quite sleep deprived and his older brother Jordan (see his update) now sleeps on Jessica’s bedroom floor because being in with Alex is just a nightmare for him. We are hoping this is short term, but sadly, our new house (for some inexplicable reason) is no closer to being ready. I have no idea why and we, as merely the prospective tenants, are powerless in this situation. The contract for the building work for Alex’s extension began on the 17th of September. It is now 3rd October and they haven’t started. We drive past several times a day so we know. It is always silent and untouched. I have spoken to the Housing Association many times but they are fed up with me ringing so I’ve stopped. They just tell me it’s a twelve week contract and they can’t MAKE the contractors start work.

As it is, we are SUPPOSED to be able to move in from the 17th Dec. Yes… right on Christmas. I can’t see it happening even if it were done by then. We are not allowed in to decorate as it is officially a “building site”… or it should be. So really, we’ll probably have to wait until we’ve decorated in the New Year (if the HA will let us do this) because it’s impossible to decorate around Alex! This delay is very depressing and the kids are upset about it as well. Remember, we were originally told we would be able to move in LAST SPRING!

Alex is currently having new genetic investigations done in search of a proper diagnosis. I’m not sure if I have mentioned anywhere further down, but “dystonic cerebral palsy” which he is commonly considered to have, is not an actual diagnosis. More likely, he has some rare syndrome. He was seen for the first time in 5 years by a geneticist who had some ideas of things to test him for. He also wanted to do a complete new chromosome study on him so we’re going down that route now. His dad and I no longer hold out for a diagnosis – after all what is it but just another label? But sometimes a diagnosis leads to treatments. I think that is unlikely to be honest and I’d be more worried about a diagnosis leading to a bad prognosis. For instance, if Alex was given a limited life span, I’d prefer not to know. I have enough issues about Jordan and his cystic fibrosis. We don’t focus on the life span thing there… we just focus on Jordan – who is very well – and keeping him that way.

Alex is doing well at school and has progressed from P-scales onto the first level on the National Curriculum in most areas, which is fantastic. Unfortunately, his behaviour at school, whilst not as bad as at home, is not what is should be and they have to spend a regrettable amount of time dealing with that rather than teaching him. It has got to the stage where I dread looking in his home/school contact book when he arrives home!

I hope to have more positive news re Alex next time! He certainly challenging us… in fact he’s put us both on anti depressants – something I would never have believed could happen! But hey… a least we’ve got him. I watched a video of his early weeks the other day and was reminded of what a miracle it is that he is here at all. It’s important never to lose sight of that.

Thank you so much to Kate who sends all the children such lovely cards. Jessica especially gets very excited when she gets things from “Dee Kate”!!! (For some reason she always reads her name backwards before correcting herself!)

Update 9th May 2007

Alex is having a really up and down year health wise; nothing really serious touchwood, but seems to be catching every bug going. Following his nasty-viral-fluey episode which lasted a couple of weeks and REALLY knocked him off his (already wobbly!) feet, he got the nastiest case of chicken pox I have EVER personally seen, which knocked him off his feet for another two weeks (he is still covered in the scars which I hope will fade!) and he has continued to catch colds and coughs. It’s only in the last 3 weeks or so that Alex has got back to full strength with practising his walking.

He is also being a REAL little monkey (understatement of the century!) with his behaviour.  We are having input from a behavioural therapist and she has helped us understand how Alex uses objectionable behaviour to add an element of control to his life and also how he “feeds off” our responses. So we have to learn to react as little as possible when he is doing some of the (sometimes quite dreadful) things he does! Meanwhile, however, he remains his lovely, sunny-natured self and is possibly one of the most sociable children in the world and despite all the challenges he presents us with, we wouldn’t be without him for the world. His hugs and kisses are worth more than anything!

Alex enjoys spending time with his respite carer Dot (who he adores) and later this month he is going to stay over at her house for the first time. Not only will this give us the opportunity to experience something we have completely forgotten what it’s like to experience – sleeping ALL through the night (!) – it will give Alex the experience of a “sleep over” – something that children of Alex’s age (nearly 7) might start taking for granted (even if only at a grandparent’s house or similar) but which is difficult or impossible to arrange for many children with special needs because other people aren’t able to handle their needs/behaviour. So although we feel a bit guilty about “sending him off” for the night, it will give us all (both of us, plus Jessica 8 and Jordan nearly 15) the chance to chill out a bit and we really need to do that!

We have had lots of delays and disappointments regarding our new house. It’s still going to happen… but ideally, we would have moved in by now. Unfortunately, in reality, Alex’s extension has not even been started! This is due to hold ups with getting all the specifications agreed with the occupational therapist and the housing association. I don’t think they realised the extent of Alex’s needs until he was fully assessed, in fact I know they didn’t. When I look back through our “house file” at all the letters I wrote (ranging from begging to threatening to contact the press) they really SHOULD have had a clue about how our housing situation has affected Alex and subsequently all of us, but for some reason, they managed to ignore us for a long time and at the detriment of Alex’s development and our sanity! Although we are still very happy and grateful to have this long awaited move in the pipeline, I can’t describe how stressful it is having to sit by while nothing happens and the building work STILL doesn’t begin, week by week. Poor Jordan is very stressed; he has nowhere to study, all his stuff gets trashed by Alex (who CLIMBS, however high Jordan tries to put things) and he is kept awake half the night by Alex’s night time antics. Jordan has CF so really needs his sleep more than most other teenagers. We have a houseful of flat packs, rugs, blinds and general new stuff for the house, NOWHERE to store it and no moving date in sight! :o( To make matters worse, someone put graffiti all over the front of our new home’s front door, windows and brickwork last week. We had hoped to store some of the new things in the house and had got permission from the Housing Assoc. to do so but obviously the house has stood empty so long now that it is a vandal target, so we daren’t store anything there lest the house get broken into. This is in spite of the house being in a nice, quiet area.

Back to Alex… he has just experienced a fab Bank Holiday weekend (we try to keep him busy as possible; he is easier to handle when fully occupied!) as he went to his Kids Club (fortnightly fun club for children with special needs) then to Dot’s house. We went to the woods for an evening picnic and found a rope swing which Alex swung on with Jordan but got just as much pleasure from watching US swing – he sat, laughing his head off! (WE hadn’t had as much fun in years either… it was like therapy… and FREE!

Hopefully, next time I update I might have some more news about the house!

Update 8th February 2007

Alex has had a busy start to the year but the most exciting thing happening at the moment is that we have found out that at last we are to be re-housed into a property suitable to be extended for Alex to have the ground floor facilities he needs. This means that Alex is to have his own downstairs bedroom and shower-room! He knows all about this and has had a look at the house that will be ours, although the building work hasn’t started yet. He will also be able to walk around inside the house using his kaye walker (something there isn’t space to do in the house we have now, so he crawls around indoors here).

Alex has been a bit poorly the last few days with a bad cold/cough and a temperature. He had yesterday off school but was well enough to go again today. Today was exciting because firstly, it was snowing (so Alex threw a snowball at the taxi driver when he arrived to take him to school!) and secondly because it was “What They Want To Be When They Grow Up” day at school. The only thing we could really think Alex might like to be is Bob the Builder (!) and since he grew out of his Bob outfit some time ago, we decided to dress him as a judge for comedy value. ;o) He wore a black cloak, with a Badge saying “Mr Justice Alex ….” on it and a wig made of toilet roll tubes and cotton wool! Apparently he had a great day!

When he got home, I was doing a fitness DVD with Jessica (whose school was closed because of the snow) and Alex joined in which was very funny indeed! He kept over-balancing and laughing at himself!

Thank you to Kate Dee for the beautiful cards we have received just lately.  You’re really very clever!

Update 1st December 2006

Alex is in fine spirits and really understanding better this year about Christmas approaching. He has been chosen to be Rudolph (out of a whole class full of reindeer!) for his Christmas Production at school, and even has lines to say (which is a tad worrying I have to confess but I’m sure they know what they’re doing..!)

He has been really enjoying horse riding and has just had his last RDA session this year.

On the medical side, Alex recently got ADHD added to his ‘list’ of different labels and diagnoses and his pediatrician recommended we try him on Ritalin as she said it might help with his attention span and general hyperactivity issues. So we picked a Sunday to start it, when we could watch him closely all day for any adverse reaction. We didn’t have to wait long… he went completely and utterly LOOPO!! He is a child of few words and can usually only take the odd step on his own… on the Ritalin he TALKED NON STOP for five hours straight… only stopping for a couple of seconds at a time (no exaggeration!) and was chucking himself wildly around and walking in a fashion we have never seen before!! It was a little funny I have to admit but as the day wore on we got quite scared as it didn’t seem to be wearing off. And although it might sound as if all the extra walking/talking is a good thing in a child with Alex’s needs, it wasn’t because he was completely MANIC and off his head! Ritalin is closely related to amphetamines but with a child with true ADHD, it doesn’t act like an ‘upper’; it actually has the opposite effect for some reason. However, not so in Alex… whatever his brain deficiency, he obviously doesn’t require Ritalin to ‘correct’ it… he was actually ‘high’ until the next morning! We did manage to get him to sleep at about 8pm but he awoke at 10.30pm and went crazy again, talking non-stop and repeating it all about 12 times… as if he’d had another dose… but he hadn’t!

The next day I rang the pediatrician who said she had only seen this adverse reaction one other time in the five years she has been prescribing Ritalin and it is very VERY uncommon (so other parents considering it as an option should not assume a similar reaction might happen.)  Needless to say we are steering clear of this route… we will cope with him at his “normal” level of hyperactivity even though he regularly trashes the house, his bedroom and every clinic he comes into contact with!!

(Despite all this he IS a lovely affectionate little boy!)

Update 1st October 2006

Alex is enjoying being a ‘top infant’ (Y2) back at school and is being very good this term which is quite a relief for us all. His new one-to-one helper is great and keeps taking him out onto the playground with his walker, where some building work is going on, so he can get to see the diggers and look for Bob (The Builder) who he is convinced is there somewhere! Alex is back at horse riding (RDA – riding for the disabled) again for the new school year and spends a lot of time trying to hug the pony he is riding rather than sitting up straight and concentrating.

His health is good (touchwood) and he is continuing to make good progress with his physical development and speech. The large sentences he sometimes comes out with now keep amazing us. The other day, we sat him down with his reading book and he said ‘This book is boring… I want Clifford!’ (Big Red Dog!) So his dad wrote that in his reading record!

Update 29th June 2006

Alex seems to be catching every little bug going this year and has needed to have lots of odd days off school due to unexplained fevers. He has suffered quite a bit with hay fever as well, but is basically in good health overall. His appetite is very good and there has been (touchwood) no reoccurrence of the epilepsy.

We have been having some behavioural issues at home and at school recently, so at the beginning of June we took him for a BIBIC assessment (British Institute for the Brain Injured Child) http://www.bibic.org.uk/ and they did a very comprehensive assessment of him. This has resulted in some confirmation that most of his ‘bad’ behaviour is caused by frustration as his cognitive abilities have surpassed his physical ability to express them. They have taught us strategies to help him make himself better understood and helped us to deal with the behaviour better when it does occur. Things are improving already and he is starting to do some productive work at school again.

He is still his loving, mischievous and gorgeous self underneath though. For his 6th birthday on the 18th June we took him to see Thomas the Tank Engine at a local light railway and he spent the whole day smiling and laughing… he loved it!  We had booked a party for him at a soft play centre but it got cancelled at the last minute when they went out of business so we had to plan something else quickly!

Thanks so much for the birthday card he received via Post Pals and for all the many good wishes on his home page.

Update 1st June 2006

Please could you put update the boy’s pages to let people know we have been having on going problems with our computer, so people know we are ok and not ignoring them. Thank you for the lovely posty the children have received lately. I did send a couple of ecards before the pc was dismantled, but obviously haven’t been able to email people to thank them for some time now.

The boys are fine and Alex is about to have a BIBIC assessment (at the British Institute for the Brain Injured Child) which we hope will give us a few ideas about how to deal with some behaviour issues we have been having lately.

Update 4th April 2006

Alex is very well and enjoying his Easter holidays. We went to London last Sunday and he really enjoyed the London Eye and the Natural History Museum. Alex was so impressed with the view whilst on the Eye and WE were really impressed with the great service to disabled people. The Eye staff let out whole group (8 of us) fast track to the front of the queues both when queuing for tickets and the Eye itself. It was also a lot cheaper for disabled people and their carers.

On Monday he went to his favourite play centre (where we hope to have his party this year) and we hope to do a few other fun things with the rest of the holidays.

Alex is so happy that the weather is improving at last because this means he has a lot more freedom at home. The house we live in at the moment is not really suitable for his needs and he is very restricted (plus unable to use his walker because of lack of space). When it’s warm enough to get about in the garden, he is much happier as he is able to ‘drive’ around in his battery car and go on the trampoline.

Thanks as always for everything. The children have had a really great ‘posty’ month and still get so excited when it arrives! Big thank you’s to Kate (Postpals), Julie Barret, and Lisa Clift for the lovely posty you sent Alex (and Jessica) in March.

Update 28th February 2006

Alex has been really poorly with flu for past 2 – 3 weeks. His brother (pal, Jordan) and sister (Jessica) had it too but to a much lesser degree. Alex had a very hard-to-control temperature which we had to keep an eye on as he is epileptic. He eventually developed bronchitis and a secondary chest infection on top of that. We have had 4 visits to the GP and 2 visits to the hospital, one of which we expected to result in an admission but luckily didn’t as Alex decided to perk up while being examined, and ate some lunch and smiled a lot! Alex has been completely unlike himself which has been horrible; usually he is full of life and happiness (despite his disabilities and health problems as HE doesn’t know he is disabled and doesn’t care! ;o) and causes lots of chaos and mayhem around the house. But lately he has just been laying on the sofa or sitting (propped up) watching TV as he has not had the energy to do anything else (the house has stayed tidy!!) He is usually a bad sleeper but all he has wanted to do is sleep since he has been ill. He was ill for the whole of half term (all the fun things we had planned had to be cancelled) and then had a whole week off school. He tried to go back to school yesterday, as he is much better than he was, but we got a call to go pick him up as he was tired and upset. So he is home again today and tomorrow we will try to send him back again. I think he is just a bit confused about why he can’t do all the normal things he usually does (climbing, fast crawling, walking with help.) He hasn’t taken any steps since he has been ill. He is finally getting his happy mood back but he is not back to normal yet.

Update 28th January 2006

Alex is fine again after a period of nasty colds and coughs before, during and after Christmas and a recent tummy bug. He has not has any more fits (touchwood!) which we are very grateful for. We have been having a few issue with behaviour with him which we think he being caused by frustration due to his understanding being so much better these days, but his body not letting him do all the things he wants –  especially at home where the size of our house prevents him from using his walker. He is very VERY clever in that he is able to use a K walker to get along on if he has the space/right flooring. We are currently waiting for an urgent house move as he is being held back developmentally due to the space problem.

Despite the behaviour issues Alex has been VERY good at school this week. He has also been doing very well with his school work, naming shapes and ‘writing a story’ (by telling his one-to-one what he wants the story to be about and her writing it down for him). He is still very into books and loves being read to and also looking at books alone. In December he received a Thomas The Tank Engine book (as posty) and this is his favourite book of the moment – he falls asleep still clutching it and we can see him on the TV monitor downstairs… very cute! As he was so good this week we bought him a Thomas The Tank Engine duvet set so he gets quite excited about going to bed at the moment (brother Jordan got a Chelsea one which he is equally excited about and sister Jess got a furry pink clock for her room as she is still into all things pink!)

I’d just like to say a BIG thank you to Parisa in Iran who sent Alex some absolutely lovely posty consisting of cards, a letter (with stickers!) and a Winnie the Boy badge which he is wearing as I type!

Update 22nd December 2005

I would like to post a special thank you to Lisa as she is just one of the lovely people who have sent parcels to the children in recent days and weeks… but I was totally amazed (in fact speechless!) when yesterday a parcel came for ME!! On a parenting website I use (one of those which I have used to advertise Post Pals lately) there was a recent conversation thead about what we parents would like to see being delivered by the postman for us even if just in our dreams! There was a discussion about makeup and someone mentioned Clinique… and I agreed saying that would be great as I usually use much cheaper brands so Clinique would be a rare treat. Yesterday a small decorative box arrived, via Post Pals, addressed to ME, and containing Clinique makeup!!!! She had put a little note in with the makeup which said “Because sometimes Mums need surprises too…”  It really brought tears to my eyes and I wanted to tell everyone. I don’t know this lady at all… she was ‘just a user name’ on a forum. I fully intend to ‘pay it forward’ as soon as I can, take a leaf out of her book, and surprise someone else who will appreciate such a gesture the way I did.

Whilst writing i would like to thank everyone who has sent cards and other posty to us this Christmas. A very special thank you to all the children at Ureshino Junior High School in Japan who have sent Alex and Jordan some really lovely hand made cards with some really beautiful drawings in them! Jordan was extra impressed and he likes to draw too… he thinks you are really talented! Wishing you a very Merry Christmas and much love.

Update 11th November 2005

Alex had an MRI scan yesterday (10th Nov) for two reasons… he was due to have one when he was 5 anyway to see if it will shed any light on why he has the developmental problems that he has (cp is not a ‘proper diagnosis’ for him… just a description) and also to see if any reasons can be found for the recent seizures. We had to go to St. Thomas’s in London (new children’s hospital called Evelina) and he had to have a general anaesthetic which is always a bit scary because he had an allergic reaction to the first GA he ever had. We should get the scan results in a few weeks.

Well he was fine… a complete star and no dramatic reactions! He was demanding food as soon as he started get past the whingey post-anaesthetic stage and ate two slices and then a dinner of sausage at mash!! It was a long day and we are very tired today. Alex is having a quiet day off school (well… as quiet as Alex gets!!) We’re glad to have got it over with as he was supposed to have it done last month but he had a cough so was unfit for the anaesthetic.

Would also like to say a GREAT BIG THANKYOU to Becky you sent Alex a lovely Bob The Builder book which we received today – he was thrilled to bits! Thank you so much! He is studying it as I type!

Alex’s new, most recent love is Thomas The Tank Engine and he watched a Thomas video yesterday after his anaesthetic which cheered him up a lot.

Update 25th October 2005

We would just like to publicly thank Lauren and her family in the US and also Karen for all the lovely treats they send to all three of the children. You are all wonderful and the kids are so grateful!

Update 25th September 2005

Alex is doing well – no more fits touchwood… and is loving being back at school.  Too our surprise his one-to-one assistant seems to have discovered a hidden talent!! She had written last week in his home/school book that he had been awarded a sticker for excellent work (I have to be told this as no sticker is ever in evidence seeing as he eats them!) The class has been doing work on ‘patterns’ and he had understood it better than the rest of the class and been stating aloud when they were getting it wrong!!! My husband and I were totally shocked because Alex’s one huge strength is his social ability (which is why we chose to put him in mainstream at least for now)… but he has never, to our knowledge, been better than any of his(mainstream) peers at anything! (Expect perhaps making people laugh, smile, feel happy etc!) We just didn’t think his understanding/attention span were ‘that good’ despite the fact that he does join in everything and make obvious progress.

So I queried it today when I met her for the first time (Alex usually goes in to school on funded transport but on Monday’s he goes horse-riding so I take him myself) and she said yes he was definitely doing it… and it wasn’t a fluke because they had tried it again the next day! All the children had been asked to get themselves into boy-girl-boy-girl formation and then 2 boys-2 girls etc and Alex has been very vocal and demonstrative at telling them all how they should be positioned!!! And furthermore… on Fri pm he SANG Jack & Jill to the class alone…!!!!   One-to-one had come back from lunch to hear him singing it to another child.. so when the teacher came back she asked Alex if he would like to sing it to the class… and he said yes… and DID!!!!

We have never heard Alex sing anything!! He will finish off sentences you start.. I know he knows/remembers songs and rhymes… but to sing along all the way to ‘Jill came tumbling after…’! Well! I thought I knew my son better than anyone… but we didn’t know he could do this!

Alex has an MRI scan at Guys Hospital in London on 13th October which will involve and overnight stay. This is to check to see if they can see any reason for the fits although all tests so far (including CT scan) have been clear. They will also be looking to see if any reason can be found for his general condition now he is older. (An MRI at 18 months showed nothing out of the ordinary.

We would just like to say that ALL cards, gifts and letters are SO appreciated and that I spend a lot of time worrying about people we haven’t thanked but our daily routine just doesn’t allow it, so I reply as often as I can. The children all really love the things they are sent. Alex in particular loves it when he receives stickers or books of any kind and enjoys the handmade items which I have to tell him all about in great detail!

THANK YOU so much to everyone and just because you may not get a personal reply, please (I am so disorganised and ‘bogged down’ with all the children’s different therapies/routines/medications/appointments/hobbies etc) please don’t think that your thoughtfulness is ignored.  We all get so much pleasure from Posty. Thank you all.

Update 7th August 2005

Alex had another fit this morning.. .. so looks like this is epilepsy and the other big one was not a one off.  We are home already, so it was a lot less dramatic and scary this time, but was so hoping that it wasn’t going to happen again, especially since he is on the anticonvulstants since last time. I feel so bad for my little man, having to deal with one more thing (and us to be honest! How do parents with children who have epilepsy EVER relax?!) but as always I know there are many more kids/parents worse off… we saw some today at the hospital.

Anyway, he seems ok and is asleep in bed. I can see him on the monitor screen as I type, but I am still going to sleep beside him tonight… and no doubt tomorrow!

Update 30th July 2005

We went to Disneyland Paris two days later for 2 nights which was a treat paid for by the Starlight Childrens Foundation (they grant wishes!) and Jordan, Jess and Alex absolutely adored it there.. as did we  Alex’s face was a picture when he saw and met the characters!

Update 22nd June 2005

We just can’t believe what all the kind people have sent Alex via PostPals! There are thank you notes on the way to everyone I have addresses for.. but I would be really really grateful if you could put something on Alex’s page to say thank you to everyone who we can’t thank personally.. we never expected all those parcels! And the fantastic thing was that he would not have had many this year as a lot of us (family/friends) clubbed together to buy him the little car for him to drive.. but he ended up with more presents and cards than ever before! You should have seen his face when we brought him into the living room in the morning to see it all laid out on the floor! He didn’t even notice the huge car hidden under a blanket for about 20 minutes because he was so busy with this posty!!

Thank you all so much. Words fail me.. (and that doesn’t happen often!!)

*photos coming to the site soon*

Update 7th June 2005

He went back to school today (after last week’s health scare!) and coped brilliantly despite being a little more tired than usual because of his new medication. He had great fun in a music lesson apparently, banging away on a tambourine!

Update 5th June 2005

Alex has had a better day today… he is enjoying being home and we are adjusting to his new and complicated meds routine.

Update 3rd June 2005

We have had a terrible week… Alex has been very ill. He had a fit on Monday morning… I found him fitting, alone in his room first thing. This has never happened before… he had never had any kind of fit despite all his other problems! The paramedics could not stop it and he fitted for about 2 hours!! He has been in hospital until this afternoon.. thank God we have him home! He is on epilepsy drugs now but we don’t actually know if he is epileptic or not. He has had loads of tests (CT scan on brain, EEG and multiple blood tests) – his little body is so bruised from all the needles he looks like a pin cushion! But thank God the Alex we know and love came through it ok.

Just wanted to let you know and to say thank you so much in continued appreciation of the wonderful ‘service’ you provide.

Alex is brother to Pal Jordan T.

Story written 2008

Alex was diagnosed with a Glioblastoma Multiforme (GBM) grade 4 brain tumour in August 2002. He had emergency surgery and was kept asleep for 8 days. In December 2002 he had radiotherapy. He started chemotherapy in February 2003 after finding out the tumour had regrown. He was on Temozomide and Cisplatin first, then Temozomide with Thalidomide. He is still on treatment and takes Thalidomide which is controlling his condition.

Alex has regularly scans (MRI) and at the moment these show no active tumour.

With all his treatment and the tumour, he has been left with a number of problems. He suffers from Epilepsy, short term memory problems, slight loss of hearing, partially sighted (has tunnel vision) and is slow processing information. He uses a wheelchair for anything more than a short distance. He also has a hole in his skull (quite large).

Alex is 16 years old and keeps smiling through all his treatment. He has been so brave. Alex’s tumour could recur at any time as it is so aggressive, but Alex tries to live his life happily. He doesn’t know how ill he has been.

Update 29th June 2009

Alex has enjoyed a couple of holidays courtesy of cancer charities and they have been great.

He is still suffering from seizures. He has also been having lots of tests recently and is waiting for a brace to be fitted on his teeth.

We had meetings at school and it’s all been sorted, it was just a case of them getting to know Alex and Alex getting to know them. He is alot happier now. He went on a school trip with them and enjoyed it. He is looking forward to going on another one next month. Hopefully he will be able to stay there for another two years.

Thanks for all the cards, letters and emails sent to Alex.

Update 14th May 2009

Alex has been ok, except for his seizures and stress over how they treat him at school. We keep having meetings with them but we’re not sure anything will change and we might have to start looking for somewhere new.

He had another MRI Scan last week and we received the results yesterday. There has been no change from the previous scan, so the hospital think the problem they saw before is scarring and so they are not as worried.

Thanks for the mail and presents. The wordsearch mug was great, as was the ‘egg’head’.

Update 19th February 2009

Alex did really well in his GCSE’s. He went to college for 2 days and then they rang me up to say he wasn’t allowed to go anymore due to health and safety. I spent weeks sorting a new school and funding for Alex. He was eventually able to start in November after his operation to repair his skull. He is studying English, Maths and Performing Arts.

In November we also found out that Alex may have a reoccurrence of his tumour as the MRI showed enhancement. A repeat scan in December showed exactly the same as November and also a cyst that was missed on the July scan. We have been trying to get treatment since December but all the hospital wants to do is scan again in February. A second opinion has been sought from Germany but we have no results yet.

Alex’s first niece was born in January. He already has 3 nephews and an angel nephew. He was really excited.

Thank you for all the presents, cards, and emails. He loved the penguin as it’s his favourite animal.

Update 17th August 2008

Alex is well overall. We thought we had his seizures under control but recently he’s been having them every day. I think he’s missing going to school. He has taken his GCSE’s and is waiting for his results. We’re not sure how well he did because he had seizures in them. He was allowed extra time and he was in another room on his own with his TA’s.

Alex has been on a couple of holidays which he enjoyed. He went to Malcolm Sargents in Prestwick and he was also invited to visit the headquarters of The London Community Gospel Choir and sang with them.

Alex should have had an operation to have a plate put in his head during this summer holidays, but the surgeon’s secretary messed up and didn’t book him in, so the op will now be in October, but that has had a knock on effect on his schooling. We had to fight to get his funding, appealing twice, but then he was unable to take the place because we don’t know if his seizures will be better or worse and also he will not be able to keep up his studies [AS levels in History and English] if he has to spend time in hospital. He is now going to another College to do performing skills and creative skills. There is a special unit there.

Thanks to all the people who have sent post to Alex.

Update 14th April 2008

Firstly, Alex would like to say a very big thank you to everyone who has sent him post, letters, gifts and emails. He sends his apologies to those he hasn’t replied to. He has loved opening the post and his nephew Nathan has been helping him as well. He is only 6 and has been there for Alex since he has been ill; he has been like a brother to him.

We have had quite a busy month. Alex has had an interview to go to another school (sixth form) as his current school doesn’t have one. He has been shown around the special unit where he will get lots of support (he has problems with short term memory). We have to wait and see if he gets funding to go there.

Alex is still waiting to start growth hormones. This has been going on since November 07, the nurse always seems to be on holiday. He is still taking Thalidomide and he is doing well, except for his seizures, which are ongoing.

Story written 2006

When Alex was a baby he was in hospital for almost 12 weeks. He went in at 9 days old because every bottle he had he projectile vomited into, to the point where he was bringing up bile and his stomach lining. He suffered from severe de-hydration; he was on a drip and lost a lot of weight. When Alex was discharged they said he had Gastro-Reflux. Every bottle was pre-thickened with Gaviscon and he had to have Ranitidine every day. Alex attended regular visits to hospital at around nine months old and a feeding group once a week, which he still attends now.

Alex’s development appeared normal at eight months old but by the time Alex was one I started to notice he would forget a lot and his development seemed to go backwards. Everyone told me he would just grow out of it. At Alex’s two year check he only scored twelve months at nearly everything. Alex got referred to the portage service, also saw a speech therapist and it didn’t take long for them to realise that Alex has very poor understanding and very poor speech.

I took Alex to see a doctor at Stepping Hill Hospital. It was a different doctor as; Alex’s usual doctor was on maternity leave. The doctor examined him and noticed he had a lot of birth marks. She asked me if he was born with them and I told her “no, they just appear” so she said she wanted me to take him to St Mary’s Hospital in Manchester where a geneticist saw him and diagnosed him with neurofibromatosis (or NF1 for short).

We are not sure how NF1 is going to affect Alex but so far we know it has affected his overall development. Alex has to go for an MRI scan because they think he has fluid on his brain. Alex also has to have a series of X-rays to make sure his bones and his spine is okay. Alex has four little lumps on his head known as Neurofibromas. In most cases you don’t tend to get these until puberty, so right now we are waiting for test results and hoping and praying all is okay.

Update 1st December 2006

Alex has now got a new sister – he is very happy and loves her lots! He has started full days at school and he loves that. He would be on the bikes all day if he could too. Alex got a bit upset with halloween he did not know what to make of it. He has a new doctor now who wants him to have even more tests and Alex can say a few more words now. His younger brother Taylor has got to have some tests on him as he may have the same problems as Alex. He is looking forward to Christmas. We went to see Santa the other day, Alex has started to understand what presents are so we should have our first real Christmas and i can’t wait.

Update 15th October 2006

Alex started school last week and he loves it. He also has a new doctor and they have said he has 5 light spots on his brain. Alex has to have an mri scan to see how fast they are growing; all his lumps are growing very fast so they all need to be looked at. He now has them in his back and they think there may be some in the bowel too. I don’t totally understand what they think he has, i know they think he has nf1 and possibly something else, but what that something else is they don’t know.

Update 26th June 2006

Thank you to everyone who sent Alex a birthday card.

Update 9th May 2006

Alex was in hospital on 7th of May with a very high temp that would not go down. On the Monday his doctor came to see us and she told us Alex had a brain tumour, they are not sure what type it is so they have asked a different doctor to look at it, if they still can’t say what type it is then they want to do another MRI scan for to see if they can make it clearer to see.

They also said they thought he had a rear condition; I can’t remember the name of it as it just was a lot to take in a one time. I see his doctor on the 23rd May for the rest of the results from this other doctor and will up date more then.

Update 28th April 2006

Thanks for all the Easter cards and lollypop, Alex loved them.

Alex had his eyes checked at St Mary’s and all is ok. He also had his MRI scan on the 20th April and had lots of blood tests. We should find out how things went at the end of May.

Alex has had a bad month being in and out of hospital. He also had a 2 year check, to see if he has developed in the past year. The bad news is Alex is the same as he was a year ago, his speech or understanding has not improved. Alex also has to have an EEG just to make sure all is ok.

We are taking him to see Thomas the Tank Engine this weekend; he should love that.

Story written 2009

In January 2009, Kian was diagnosed with an extremely rare form of severe combined immune deficiency called P.N.P. This is a degenerative condition for which the only cure is chemotherapy followed by a bone marrow transplant.

As a consequence of Kian’s condition, he is extremely susceptible to infections and viruses. A simple common cold could prove fatal for him. Kian also has a number of neurological problems which cause him to be globally developmentally delayed. These problems especially effect his physical development and he finds this extremely frustrating.

Until Kian has his bone marrow transplant he needs to be kept at home. He is not allowed to go swimming, attend nursery or pre-school groups, go on public transport, or be in any environment where there are lots of people. In the mean time, Kian is kept at home in isolation to protect him.

Kian is scheduled for a bone marrow transplant in summer 2009. He will be admitted on July 13th and will spend approximately 3 months in hospital. Until then Kian takes a number of different medications on a daily basis to keep him well. These include prophylactic antibiotics, anti fungal treatments, inhalers, iron and weekly infusions of immunoglobulin.

Update 10th April 2010

We are very sad to say that Kian passed away in his mum’s arms and with his family around him yesterday.

Update 9th April 2010

Kian has become very unwell and we have brought him to Acorns Childrens Hospice where he can be kept comfortable.

Update 27th March 2010

I wanted to let you know that unfortunately the doctors have told me that there is nothing more they can do for Kian as he is just too poorly. We will be bringing him home on Tuesday to spend whatever time we have left with him there.

He still loves receiving post as it really brightens up his day and he would love to continue to get some at home. His new address will be 10 Highland Road, Charlton Kings, Cheltenham GL53 9LT. I will post regular updates from now on.

Update 1st December 2009

Well it’s been another tough month here for Kian. The antibodies that the doctors thought may help to treat Kian’s GVHD did not have any effect, this was such a shock as they are usually very effective and we were told that we had only 1 option left, a type of stem cell. The only problem was that they are not available in the UK so they had to get them from Holland; Kian had these cells a couple of weeks ago so we now just have to wait and hope that they work.

Kian has continued to loose skills and now has no use in his legs and is very weak, all MRI scans have shown no changes so the doctors are baffled as to why he is getting worse.

On Friday 20th November Kian did not seem well and was started on antibiotics, his blood pressure was high and he was very sleepy. The next day Kian was much worse he had often required over night oxygen and his blood pressure was now 190 despite lots of medication to bring it down. At 11.30am Kian had a massive fit and unfortunately this was too much for his body and he stopped breathing properly. Fortunately the intensive care team were already with Kian and put him on a ventilator. Kian recovered well from this episode and it now on medication to reduce the risk of him fitting again. Kian had another MRI scan following this and unfortunately this showed extensive progression, this was devastating news and doctors have told us that Kian is unlikely to get better. Kian has been started on 1 last medication to try and fight this infection and we will know in about 2 weeks what effect it has had, so fingers crossed the next update will be good news.

Thank you so much to everyone that has sent Kian post recently, he still loves receiving it. A special thank you to the children at Yarnfield Primary School, Kian loves the pictures and they are on his wall. Hopefully when he is feeling better he will be able to send you some back.

Update 26th October 2009

After some tests we found that Kian was unfortunately suffering from a chest infection and engraftment syndrome. He became poorly very quickly and was requiring oxygen to help him breath. He was put on a high dose of steroids and a number of antibiotics and after a few days he started to feel a little better.

The engraftment syndrome that Kian was suffering from quickly turned into GVHD which caused a horrible itchy rash and continued breathing problems. As a result, Kian needed to stay on the high dose of steroids.

The steroids controlled the GVHD well but unfortunately they have also caused him to have many more infections and virus’ including CMV, EBV, and BK virus which caused his bladder to bleed, and then lead to Kian having large blood clots which were impossible for him to pass and were extremely painful. He had a catheter put in to help them break down the clots and make it less painful.

Kian also picked up a serious line infection which made him very poorly as well as a fungal infection in his lung.

More recently Kian has started to have tremors and has lost some of his skills so he had an MRI scan of his brain which showed 2 lesions. The doctors think that these lesions are also fungal infection. It is now a waiting game to see if he will have long term problems as a result of these.

The doctors have tried to reduce the amount of steroids on many occasions but each time they do his GVHD flairs up so they have to be increased again. Unfortunately the GVHD is now also affecting his gut very badly, so he is not allowed to eat or drink anything and he is now on TPN to ensure he receives all the nutrients he needs.

The doctors have now decided that the best chance of Kian’s GVHD getting better is to treat him with antibodies and he stared these last week. It will be approximately 1 month before we know how effective they have been for him.

I’m so sorry it has been so long since the last update but as you can probably tell Kian has been having a tough time of it.

It is so lovely for Kian to receive post from all of his Pals. He gets very excited when the post arrives. We have all of his cards displayed around his room and the gifts he has received have really kept him going. It has been so long that it is impossible for me to thank everyone individually, but it really does mean a lot to us to know that we are in your thoughts. Thank you all so much.

Update 6th August 2009

Kian has had a good couple of weeks with very few side effects from his chemo, the only one has been feeling very sick which in turn led to a refusal to eat, so he is now being feed through a tube. Hopefully this won’t take too long to get better as he usually loves his food.

He has had some special splints made for his legs as the muscles are very tight and they should hopefully help him walk in time.

Kian has now started to get a little more poorly and has had a temperature which is refusing to go down. He also some breathing problems and has been started on some strong antibiotics. He will be having some tests to establish what the problem may be.

Thank you for all of Kian’s post, he has been very lucky and loves it all. A big thank you to Emma for his favourite things picture, he enjoys looking at all of the things on there. Also to Tez for the little dog and duck and for the photo of your dog. Once again to Wendy who always remembers Kian, he received your Bob card this morning and he hasn’t let it go since!!

Update 25th July 2009

Kian was admitted to Great Ormond Street Fox Ward on the 20/7/09. He has a lovely little room which we have already made home with lots of his toys. Kian has had his hickman line and NG tube fitted which is brilliant as he does not have to have any more needles when they are taking blood. He also has all of his oral medicines down his NG tube too which is fantastic as he has so many to take and most do not taste very nice. Kian has started chemo now and despite lots of pre meds Kian had a reaction to the first drug. This is not uncommon and gave him a high temperature and a rash. He is due to have his transplant on 30/7/09 and i will update after he has had it.

Update 18th July 2009

This month has been very busy for us. Kian has been well which has been lovely as we have been able to see everyone before his treatment begins. We spent 2 days in Great Ormond Street for pre transplant tests and this was tough for Kian as some of them were not very nice. We took him to the bear factory to get him a special bear to take to hospital with him though and ended up with 3! During this visit to Great Ormond Street we were told that Kian’s transplant was to be delayed by a week due to the donor not being able to make the original date. Although this was frustrating, it has given us an extra week to prepare, which has been blessing in disguise.

Thank you so much to everyone who has sent post to Kian this month. He has loved opening his cards and gifts and gets very excited when the post arrives! A special thank you to Wendy who sent Kian his first ever Post Pals card.

Story written 2012

Katy was a very happy smiley child but then one day her parents noticed she wasn’t smiling anymore and it rang silent alarm bells for them. She was also suffering headaches and blurred vision, which at first were thought to be migraines and the CT scan that was done came back clear. After a teacher noticed something strange in photos of one of Katy’s eyes, her parents took her to A&E in October where an MRI was done. Katy was diagnosed with Brainstem Diffuse Pontine Glioma (a brain tumour in the brainstem making it inoperable and this type of tumour also does not respond to chemotherapy).

Katy was given 30 sessions of radiotherapy (the maximum amount allowed) and given 6 – 9 months to live, but 3 months later she is very poorly and in a hospice. Her family have already had to say goodbye to her 3 times although she pulled through each time to everyone’s surprise. She wanted to meet her baby sister so her Mum was induced at 38 weeks and Katy has met baby Scarlet. Whenever they place Scarlet in her arms she smiles.

Katy has stabilised a little but is still very ill. The family are talking to a surgeon in Australia who is famous for performing surgery on those no one else will.

Katy is unaware of her prognosis but the family are in need of lots of TLC and smiles and they would love some cheerful happy post.

Family Update April 2013

We feel that perhaps it is now time for Charley to move on from Post Pals. She has loved every moment of being with them and the post she has received has most certainly helped her get through the most horrendous time in her life. We do feel now though that Charley is doing well and that perhaps it is time for another child to take Charley’s place that is in much more need of some Post Pals love.

Thank you so much for supporting her and Katy, we’ll never ever forget your kindness.

Our very best wishes,

David and Paula

Update 19th January 2012

We are sad to say that Katy passed away at 1am this morning. She had spent the day comfortable with her parents talking to her and playing her Disney CD to her.

Update 17th January 2012

Thank you for sending post to Katy. Her family have now asked ‘for prayers for Katy’s smooth transition’ instead.

Update 16th January 2012

This illness is so cruel. Katy has been up half the night and is so poorly. She is the sweetest girl in the world and with the cruellest illness. What did she say to me at 4am? “Why don’t you try to get some sleep mummy?”.

Update 15th January 2012

Katy is in a lot of pain today and is being given morphine. She remains beautiful and very well mannered, thanking the nurses each time her meds are given and trying to smile at their jokes. I pray so hard all of the time. I draw strength from all your comments and prayers too. I love this girl so much my heart actually aches.

Update 13th January 2012

Our poor precious girl is really not well today. She is tired. I’m sat beside her holding her hand listening to a lovely Barbara Streisand cd. I’m trying to keep the tears away in case she looks at me. I wish I could suction the lump out of my throat.

Someone sent us a scrap book making kit which we have decorated. She wants our Florida holiday photo’s inside. It’ll be so special when it is done. Hopefully she’ll feel better after a good long sleep and then I’ll carry on with my task. We have been offered flights to USA! I just need her to be well enough.

A big balloon bouquet arrived too, thank you Post Pals!! We have had lots of mail via Post Pals too! We also received the most beautiful book of husky pictures all the way from Canada! I can’t believe it; Katy is over the moon xxxx