C/O 34 Gordon Square
Faversham
Kent
ME13 8HN
United Kingdom

NB: this is a forwarding address for the Pal, we do NOT disclose home addresses

Email Pal

Alex William H's Parents/Guardians

Clare

Alex William H's Siblings

Jordan (23/07/1992), Jessica (12/12/1998) likes Dora the Explorer, unicorns, Bratz, High School Musical, drawing, crafty activities and things that are pink or purple

Alex William H's Interests

RDA (Horse Riding for the Disabled), Watching Noddy and Bob the Builder, Rough and Tumble games with Mummy and Daddy, Playing in the garden, Playing with his brother and sister, Thomas the Tank Engine, Clifford the Big Red Dog, In The Night Garden, cars and vehicles (but not flimsy/fiddly type), musical toys/ things that he can make a noise with, loves cats.

Alex William H's Favourite Colour

Orange (We think)

Is Alex William H able to read?

No

Is Alex William H able to use hands?

Yes

Is Alex William H visually/hearing impaired?

Yes

Does Alex William H suffer from any developmental delay?

Yes

Full use of hands

Can use but clumsy and uncoordinated, toys and books need to be very tough as other wise they get broken

Visual/hearing impairment

Visual but can see ok with glasses

Developmental delay

Good social skills but limits speech. Can’t stand/walk unaided

Allergies

Dairy and Eggs

Favourite type of post?

Post with pictures of his favourite characters or cats on

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 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 :o(

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! :o( 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! :o)

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! :o)  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! :o)

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