Mezza x

Today I went to Merry Hill with my mates. There was hannah, caitlin, kate, alice, kieran, alex, jo and dan R. It was fun and I spent alot of money on ice cream. Also spotted some shoes in Primark. Nice!! Only £6 as well. Brought some Austin Powers socks for Dad for xmas...... Hope he likes it.
Got kicked out of Hawkins and Bazaar for not buying anything. It was also Kieran's bday but couldn't find anything nice so got him a free heart out of Build A Bear. In the shop Kieran asked for a free bear but the man said no and said that he could bend over, put the pipe up is butt and stuff him....... We left.
He also wasn't allowed to see Santa so he got upset but he got a freecolouring page of Rudolph with free crayons. Had alot of fun and laughs but had to go early. :( Instead of going to Republic I had to walk all the way to St Marys just to pick up my bros.

Hannah
x

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….

Half-Term

Half Term was really great! We went away to Edinburgh for a couple of days without the boys (they were at nan and grandad's). We stayed in a hotel somewhere near the dungeons. As soon as we got there we went to Edinburgh castle which was really good. We went to Pizza Hut after because it was Happy Hour then (to ruin it all) dad broke it.
Next day, we went to Grayfriars Bobby and we looked around (well... Mom and me because Dad couldn't be bovered walking around so he sat round the front. Then we went to the museum and mom and dad stormed round with me trying to catch up with them. Next we went on a tour bus and we were supposed to have headphones but we didn't realise so we just sat there while everyone else listened to the facts through the headphones. Halway thorugh I had to ask the driver if he had any.
Then we went shopping and dad had his cream tea...While mom dumped as much marshmallows as she could into my hot choclate.
After we went into the dungeons. It wasn't scary like I thought it would be but it was funny. Mom got accused of being a witch and I don't blame them. Dad got hooked up by the backside which looked really funny. Then we went on this boat ride where(Lol)Dad screamed like a little girl to scare other people. We also had our picture taken(which I lost then found) when he screamed like a girl again. I look like a right idiot though.
Then the last night we had a chinese which was really nice but I didn't have much as usual. In the morning we came back and I went to the cinemas with a friend.

More someday,

Hannah
xx

Paddling in the mire....!!!

Well here we are again...!!!

Been a few busy weeks with one thing and another. The ball is seriously rolling now where the statements are concerned. Had the Speech and Language come out before the half term to assess the boys. First thing she picked up on was Harry's autistic traits. Thought the boys needed an intensive therapy programme to work from.
Had the Education Psychologist come out over the past two days and had serious concerns over their support in school. Not with the school itself and the 1:1's. He thought they did a very good job considering the lack of help they've been getting from the powers that be. I personally think they are great and the boys love them to bits. Basically confirmed what we thought about Harry and raised his concerns about his little traits. Thought he was showing bits of Aspergers and Autism as well as his ADHD. That prompted us to phone his consultant to see whether we can get an MRI scan done to see if there's been any other damage to his brain other that what we were told. Tom was slacking due to him not being able to cope with the long day.
Even though we already know this, suppose it was a bit of a kick in the teeth hearing someone saying it but as Malc says it's an opinion.
Anyhow going onto better things, both are very happy at school and making friends. The other kids are great and they have included them in the birthday parties etc. Harry has finally moved onto another film. It's the Grinch. Still green but what the hell, it's not Shrek...!!!
We've been given a grant to go towards a Wheelchair Assisted Vehicle and we're gonna have a look at some at the end of March, so fingers crossed it will be there when we go and see dad in August and we'll be able to take Tom's electric chair out so he can practice in lots and lots of open space...!!!

Malc has been working hard and has nearly finished Tom's bedroom. They've started the building of the extra room out the back and then we'll be able to knock through into the kitchen.

We managed to get away with Hannah for a couple of days over the half term and it was good. We took her up to Edinburgh to see the sights and I think she enjoyed it. She didn't moan anyhow so I took that as a good sign.

Well think that's about it. Will probably think of something else uninteresting to say later

A little thing called Emotion

This was sent by me at 10 to 7. I can't tell you who I sent it to and as you can tell it is mostly about me and I finally agreed that I would show it even though people will be reading it. I am truly confident about my decision. As I was typing this letter to the person I saw emotion in my face and I realised that it was time to face the facts. As you read the letter I guess some of you will probably realise who I sent this to.

I don't know if you got this or not because I don't know if the address is right. There is one thing I want to say but I can't say unless I write it down because I haven't got the courage to say it out loud. People are filled with emotions and I know that from just seeing people everyday, by reading body language. When I was a couple of years younger I thought emotions could only exist in films and familiar, but now there is no way of describing ones feelings. I feel loads of things inside me and some I can't control.
There is joy whenever I am happy because when I am happy I am more than just that I love and understand people more like my brothers for example.
When I am sad I can't explain how sad. I just want to sit down and cry and that is what sometimes happens, as I'm sure you know.
When I am angry you know that I can't hold it in and I burst out on every person I meet.
When I am caught by surprise I laugh when it is a good surprise and smile and it is the same as when feel happy.
When I am caught in a horrible surprise I start yelling and hitting people for no reason. This is one I can't control as by now I am sure you realise. After that I realise what I have done and burst into tears. I can never control my emotions and they get the better of me. You may have realised by now that I definitely might not be able to hold them like other people can. (You for instance)
Sometimes I can tell you're tired and want to lie down but you carry on and sometimes I just don't think that you realise how much I admire you. You sometimes think that I may be brat but I tell no lie and admit that maybe I am but sometimes that emotion is caused by grief.(Nanny M)
I will stop writing now and hope you understand where I am getting at. I am not saying anything against anybody but maybe myself.
Maybe you will understand emotion as I understand it and I will understand emotion as you will see it as I get further through life but maybe for now I am better off not wanting to ever understand anything and just sit and watch Dora and noddy as I did when I was little.

Love Hannah
xx

Thomas the superstar

Well the local superstar did his little bit in his attempt of world domination this week. When we first set up Tom's fundraising, Steve the manager of the local lesiure centre did a sponsored run for him, doing the Great North Run. For his efforts Steve raised nearly a thousand pounds courtesty of all the regular users of the centre.

The gym at the centre has been closed for a while as they have refurbished it. We had a phone call a couple of weeks ago from the Centre Manager asking if Tom could open it with the Mayor...!!! They had had a meeting and it was unanimous that Tom should be the one to do it.

Anyhow fast forward this week and on Monday he went along with Harry, (Hannah was at school and not impressed - another story...). Mandy and Claire the trusted 1:1's at the school managed to talk the headmistress round into letting them come for the jolly as well. He was completely non plussed about the whole thing and at one point was playing with his wheels looking for a sharp getaway. Good job he can't take his brakes off yet..... Harry was golden as well. That was due to the fact that we had duck taped him to his pushchair and he couldn't escape. The glint in his eye when he saw all the shiny equipment was enough to know he was in the best place and safely restrained. Both of them and Clare managed to get excited when they saw the buffet. Clare very kindly managed to make sure they were well fed....(one for you, two for me attitude me thinks, Clare...lol) but the highlight of their day was the huge fire engine they were given by the folk in the leisure centre. Lot's of noise and flashing lights and that's just Harry...!!!

Met our new SALT on Wednesday with the manager. She seemed really nice and was probably wondering what the hell she'd got herself into when we started with the ins and outs of the boys statements with the manager.

As for the house, it's coming on slowly. Did some more painting in the boys rooms. Noddy and Lazytown are nearly finished in Harry's room. We put the boys beds together. Harry has a F1 Racing Car and Tom has a Buzz Wagon. They seem pretty pleased with it. Harry has stopped in his room a little bit more on the nights but not by much. Small steps I suppose....

The builder has also been and is sorting the room out in the back. We're hoping to get the roof on it by next week.

Well think that's it, nothing more to add apart from a wasted afternoon watching Spurs loose again.....!!!!

Photo's below are with Karen Shakespeare who was the local Councillor opening the gym.

What a week...!!!

Not...!!!

Same as usual really. As Hannah's already said she's went away for the weekend. Ahh, the peace and quiet... Still had the lads though to give us grief.....but oh joy only for a short while cos Jill and Keith took them off our hands for the Saturday.

Took Harry to the hospital for another appointment and he was finally discharged from something. Will say it very quietly as to not embarrass him but it was about his manhood or lack of it...!!! He'd already had one op to bring the left side down so we were waiting for the other side to make an appearance.... it did after some persuasion and a few tears to his eyes.... lol....!!!

Anyhow that's enough about that....sure most of you blokes have got your legs crossed... :)

Finally got some new drugs for Tom's drooling while we're waiting to be assessed for his saliva glands to be sorted out. This should stop his choking on the night and help him with his eating. He'll also be able to stop wearing his bandana bibs for the majority of the time as well. He's decided he's too grown up for them too.

The next exciting thing we'll be up to is when Tom opens up our local lesiure centre with the Town Mayor on Monday. Should be quite entertaining as I'm waiting to see Tom waving the scissors about and trying to stab someone when they try to get them off him as he cuts the ribbon. Will try and post some photo's when we get them.

On that note I had better stop Harry from jumping through the sitting room window as he's reinacting Kung 'Shoo' Panga....!!! Don't think the sofa springs are gonna hold out much longer with his constant bouncing....

Hello from me!!

Hi, I am Hannah!

I have just spent a weekend at Ingestre Hall and it was really good. I really missed the boys and um... parents. It was like a weekend away with all music and nothing else. It was fab. I made new friends! And I had a great laugh! I saw my cousin Louis like every minute and it was annoying sometimes. JOKE! ( He will probally read this) We had this big orchestra and everything. So that is that.
School is ok. Parents evening a while ago and they said I was great. :D!!

Hannah
xx
P.S. If mom says anything tell me.. (wink wink)

New Beginnings....

Thought i would start writing this blog so i could keep everyone updated with what was happening with us Gardeners...!!! Well tell a lie, it's for dad so i don't have to keep skyping him with everything the kids have been up to... lol



Looks like we're gonna have another busy year with appointments for the lads, hannah's social life and us parents hanging on to our last bit of sanity.

Can't believe the boys are gonna be five this year. Considering they weren't supposed to live through the night, it's quite a milestone. Hannah is gonna be 12 this year. Can't believe she's managed to get to that age either...!!! lol

Considering what she's been through she is a fantastic kid and I'm very proud of her. If you don't already know, she's done well with her SATs and has settled well into her new school. She also got her black belt in kickboxing just before christmas (just got to remember that when i'm telling her off)