Back Home....

Well had another two exciting days on the childrens ward. Unfortunately Harry was down for his op in the afternoon which meant him not being able to eat from 7am. What a mare. He's just like a scavaging rat when his hungry...!!! At least the Merryhill is good for something and that's wasting a couple of hours and being able to stop Harry from eating. Mind you watching him dribbling while we had a large mac and fries was good...!!! (only joking...;))

He was first one down and this time the anaesthetist actually listened to us this time and gassed him first before trying to fit the canula. He was a really brave boy and went down without a fuss but being a true Gardener uttered his last words of 'dinner' before he went under...!!! He had a rough time in recovery which involved having a bleed from his mouth and nose and him pulling the canula out of his hand. They even thought about taking him back in to stop the bleeding. This carried on in the ward and during the night had a few more bleeds. He was quite upset and sore. The surgeon checked him out in the morning and decided to give him till lunch time to see if it would stop. Luckly it did. Two boxes of pringles (they belonged to the little girls across the room from us, finders keepers rules apply), toast and lunch convinced them he could come home.

He's still not grand and very quiet but he's home.

On a better note, Tom has a duel role in the school play this year, a traveller from afar and a wise man...!!! He'll be with sheep also. The teacher also said he could also do the collection after. I told her I was all for making it authentic and letting him bumshuffle on the floor with a cardboard label on him and a tin collection tray. For some reason she wasn't up for that... wonder why...??? Good job she's a good friend and has a decent sense of humour....

All fit and healthy

Got to say that swine flu was literally a bit of a swine. Just when Hannah was getting back on track, Harry decided he wanted to be ill as well. I think it was just to keep Hannah company on her extra week off school...!!! They did give him the Tamiflu as well but luckily just stopped as a chest infection. At least the poor armchair managed to recover from the constant jumping on, at least for a week anyhow.

We had an eventful meeting at the school where they put a care plan in place. Think i managed to scare the hell out of them with what could be. The 1:1's already know but think the head and assistant heads were left thinking 'oh sh*t' lol

Also had another letter through. This time Harry's op date for his adenoids and tonsils. That will be on the 26th November. I know he has to have it done but get sick to my stomach thinking about them having more operations. It's not nice having to carry them down and watch them struggle with the anesthetic and then wait for that call for you to go down to the recovery room cos they're not waking up properly.. Anyhow he should benefit with his breathing and swallowing.

Both are doing well at school socially and educational wise. Harry has read hisfirst book today. He was that excited he read it to his 1:1, teacher, assistant head, headteacher and then caretaker. Got lots of stickers for his effort and a packet of sweets (one for tom as well) from the caretaker.

Anyhow back to the normal humdrum

Just like a train...!!!

There you go, no posts for ages and then two in two days....!!!!

So much for having a lie in this morning. The old clock going back did us no favours what so ever.

Mind you it doesn't help that Hannah was creeping round the house for most of the night. She said she felt ill yesterday. Remarkably it was after the two hour bowling birthday party she went to...!!! Was getting a bit concerned for her cos she was very hot and looking sorry for herself last night. She was even prepared to miss John and Edward on the X factor, so knew she wasn't herself.

After a few consultations it was decided by the powers that be that she did have swine flu. So she's now confined to upstairs and away from the boys at all costs. Got to say she's got crap timing. Fancy getting ill at half term...!!

Never mind should be a quiet one.....

Back again...!!!

Wow, such a long time has passed and I must get into the swing of this again. Had a few odds and sods on so seemed quite busy. The summer hols were again quite busy. Three weeks at my dads, Hannah here there and everywhere with her mates and Young Carers (which I’m proud to say she’s now the secretary of the committee and seems to be taking it quite seriously). The boys now partaking in the local disability centre. They spent a week playing there and seemed to enjoy it.

Beginning of school term bought us back to normality. Harry actually wanted to go back to school…!!! Think he missed the routine of it all. Tom managed half a day. He picked up his swash brace, which allows him to sit properly with his hips in line and his legs not scissoring. The next day, Tom went into hospital and had his left testies dropped. We then swapped kids over and Harry went in for a sleep study. Half knew it would be a waste of time because he was well. He finally went to sleep around 10 and was wired up for the night.

Over the holidays CAMHS decided that both the boys would been seen on a regular basis with their own Psychotherapist. So every Thursday they toddle off to the centre where they are assessed. Nothing is really said but just assessed…!!!

We took Harry to get the results of his sleep study where surprise, surprise we were told his sats were fine. Really….!!! They usually are when he’s in good health…!!! He agreed his Uvula (dangly bit in throat) was growing on his tonsils and that his tonsils were enlarged. We then went and got an X Ray done of his adenoids. Was supposed to see ENT this week but we’ve been told he’s been put straight on the operation list so there’s no point in seeing them. At least that’s one less appointment this week.

Had a fruitful meeting with the new Social Worker and she’s got the ball rolling on quite a few things, so that’s one last thing to worry about.

Basically things seem to be rolling along nicely. The back garden is finally starting to get into shape. Had the bottom part slabbed so the boys can go out and believe me they’re making the most of it.

Hopefully now I will get going and make enough time to update properly.

Half Term Hell....!!!

Like most of you had the joy of the kids at home this half term...

Hannah went of shopping on saturday with the girlies and surprisingly enough didn't waste that much money. Think it was down to the fact that she had to spend her own and not ours this time....!!!
Didn't go far this week as the brakes needed doing on the car and was squealing like hell...!!! We did manage to squeeze like sardines in Malc's learner car with the wheelchair and went off the Evesham on the Monday with Ed, Lyn, the lads and the woof woofs. Considering it was a last minute thing, was a really nice day. Also decided to take Ed and Lyn out for a meal considering he hit the big 4, 0 and Laura being the fantastic person that she is, baby sat. It was nice being with the grown ups for a change (excluding Malc and Eddie obviously...!!!)

For the rest of the week we've had to contend with Hannah being bored with everything, think it also includes breathing. Just getting out of bed is too much work for her and she's let everyone know. Harry and Tom have been content with demolishing the house and watching DVD's. Cat in the Hat is the one at the mo and a special thanks goes out to Sarah for that one....mm

Shelly the SALT came out to have a look at Tom eating. She was quite pleased with him and as i already know, there's not a lot she can do with him. He's doing all the basics and if he's not concentrating on anything else, does it reasonably well. It's just his drinking that we've got a concern with. He hasn't got the nack of swallowing when his drinking, he just fills his mouth up and either chokes on it or it comes back out like a fountain spout. If somebody doesn't know about it and sits by him, they usually get soaked.

Well off to CAMHS tomorrow with both the boys as they want to see both of them interacting. Mm, lets see how long their room stops intact....!!!

Catching up part II

Well were do we start….!!!

Took Harry for his ENT appointment cos we bought up the fact that he always looks tired and pale in the morning. He also snores, sometimes very loudly in the night. His uvula is also attached to the left tonsil and tends to gag on it as and when it takes his fancy. It’s then his spectacular version of a guffing fountain is put on show. Unfortunately (or fortunately, depending on who you are) in the past few months he’s managed to show this skill off at school and normally aimed at Mandy his 1:1.
The consultant was quite impressed with his tonsils. The left one is swollen but only at the top. Thought it was quite unusual and hasn’t seen anything like that before…. Typical…!!! He said is Uvula is only attached because the tonsil is pulling the back of his palate round.
Said he was happy to take his tonsils out as he also has quite a few throat infections. Also said he’d take his adenoids out and that should help with his breathing and lack of oxygen in the night. So the next thing is a sleep study and take it from there.

(Uvula if you are wondering is that dangly bit at the back of the throat)

Harry’s been a bit busy the past couple of weeks as he also had an MRI scan which we requested. He hasn’t had a scan done on his brain since he’s left hospital and since he had the biggest brain bleed out of the two we were wondering if there was any damage done contributing to him being completely loopy…!!! He had to go in to be sedated. Was given the sedation at 9.10am. Should have taken about twenty minutes for him to go off. Two hours later he was rolling round the bed and ward completely paralytic and trying to stop awake. All he was interested in was getting some cake and his crisps, which he put in his bag in the morning. Hopefully they managed to get a good scan, as he would only lie on his side. Will get the results in September.

Had Sports day this week which Claire and Mandy were preparing the boys for. There was plenty of practice going on and I’m sure Claire won’t mind me saying, one run she pushed Tom down the track and they came last…. My question is how fit is Claire to be beaten by a bunch of four year olds….mm. Fortunately for both of them the boys refused to do anything and saved them from having to run in front of the parents and that 30 minute run on the treadmill by Claire the night before was wasted…lol

Took Tom for an appointment with the Orthopeadic Consultant for him to be fitted with a Swash brace. Its a brace that goes round his hip and thighs. So we’ll have to go and get him fitted for that and see if he tolerates it.

Well think that’s about it. Will have to update with all the mundane stuff later…

Long time no speak...

Been a tad busy since half term.

The main bit of news I suppose is that we won our appeal against the LEA. We were going to the tribunal on the Monday and Wednesday and they agreed to virtually everything the Friday afternoon before….!!! The other bits that they wanted changed, we weren’t that bothered about as the main changes and support for the boys were agreed to.
Got to admit felt really relieved when I got the phone call from the solicitors saying it was finished with as it had virtually taken up all my time for about a year. The solicitor was fantastic and was like a bulldog with some of the matters. As I had said in the previous post, the LEA had pounced on the fact that the Independent Psyc had said they should be in a special needs school. The LEA wanted to postpone the tribunal so they could get us to look at a special needs school. They also wanted a special needs school named in the statement. Basically the solicitor said no because they were agreeing to the support in mainstream and that if they tried to put a special needs school in the statement, we’ll go back to court.

Both the boys are settled in school and are progressing well. Mandy and Claire are both great and the boys think the world of them. They’ve got sports day this week and will try and post some photos if it doesn’t rain.

Tom had an operation on his bits..!!! and was down for 1.5 hours. Had to go down and fetch him from the recovery room as he was a tad upset, understandably. After a quick cuddle, drink and something to eat he wanted to go back home after an hour. The main thing was trying to stop him bum shuffling which he was well peed off about.
Considering it was a day before their birthday, thought it was a good present for him…

They had their consultant appointment and Tom has put a pound on in a year. Wish I had his genes…!! Harry managed to put on a whopping four pounds. Special thanks to Mandy and her secret stash of chocolate biscuits.

Well had enough of writing for now, will carry on tomorrow with the catch up….