Thursday, 28 May 2009

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

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....!!!

Friday, 22 May 2009

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…

Tuesday, 19 May 2009

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….