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Back With It PDF Print E-mail
Written by Administrator   
Thursday, 03 March 2011 13:39

Wow hasn't time flown.  It's been a long long time since our last blog update, so before I get started I'd like to explain why and firstly appologise.  Some of the old members will notice the site now looks completely different.  Unfortuantely the old site was hacked and mounds and mounds of indecent meterial posted all over it.  Basically I had to rebuild the whole site.  This was completely self funded and took many painstaking hours, weekends and nights.  To prevent this in the future all posts in to the forums will be moderated first before they appear.  Before I go on to our little soilder Harry, can I extend a warm welcome to our newest members who we have met through Parents Hemi Chat on facebook, what wonderful, hardworking people you all are.  So, to continue as best I can (Mummy is going to be writing the blogs in future as she always did, because I'm useless with remembering things!)........

WOW!  Reading the last blog, our little man wasn't even walking.  How things have moved on!  Harry started walking against all the odds and doctors telling us he wouldn't before he was 2 and there's been no looking back since.  It was slow progress though and Harry seemed to get very frustrated with himself because he couldn't do things he wanted to do, as soon as he was stable on his feet though his frustration soon vanished (so did all the choclate from the cupboards too!).  His hand was still very tightly fisted with thumb rolled in, but he was fantastic at doing things with one hand that you'd normally need 2 for.  Harry continued to go for eye tests and every one of them came back normal so now the visits are every 6 months. 

Harry started Hawthorne in September 2009 as Michelle said was happening in the last post, and it has been truly amazing for him, socially, mentally and physically, it also gives mum some much needed relax time with other mums with children that have disablilites too.  Unfortunatley it is harrys last few weeks there as they have to leave when the are 3.  That will be an upsetting day I'm sure.

Michelle told you all she had gone back to work 2 days a week and Harry was Nursery.  Well now Michelle is back fulltime and Harry goes to a registered childminder (Aunty Yvonne he calls her) where he absolutely loves it.

The Blackpool holiday was an experience.  The Daisy Chain Project was an amazing place for the kids with themed bedrooms, they absolutely loved it and I would recommend it to any of you.  We enjoyed it too, our bank balance didn't!  They joys of Blackpool i guess!  Harrys speech is fantastic, so much so that he insists on singing I've Got a Feeling by the Black Eyed Peas constantly from start to finish.  We took him on his first holiday abroad in May last year to Turkey, thanks to Family Fund, I wasnt sure what he'd be like, round the pool, with other kids etc, but the little lad held is own trying everything he could including copious amounts of food!  Again a bit of frustation came in when it came to the pool as he didnt want us in there with him (Mr Independant) but if we let go he would slip and I would have to do my baywatch impression every time.  All in all though what a fantastic holiday.

I'll bring us up to today now and all the things I'm missing (I know I am) Michelle will update and fill in.  2011 has seen a major turning point for Harry.  He got referred by the specialist for Botox injections in to his palm.  I wasn't sure about this and was frightened to death for him (I have heard how much it hurts).  By the by Michelle convinced me to let him have it done.  We turned up at the hospital on the date and some Doctors gave him a local Anesthetic (I'll come on to what that did to him!) then took him through to a room where Michelle distracted him and BAM!  in the needle went.  Harry squirmed for a bit but then was fine.  The Doctors asked us to stick around until the anesthetic had worn off and told us we wouldn't see the effects of the botox for at least 2 weeks.  I was sat with Harry on my knee in the waiting area and he wanted to get down and play with some toys, I told him no because he couldnt stand because of the anesthetic.  No further of a doo Harry attacked me in my face and eyes and scrambled to the floor.  OVER HE GOES and BANG!  Head straight on to big toy castle.  Accident book please!  I tell you this in case you go through it.  Do not put them down for a second! So, 2 weeks the doctors said.  More like 2 days.  I have NEVER seen Harrys hand like this!  It's open, thumbs out (most of the time) and hes even started using it of his own accord.  Dont get me wrong, hes not going to start playing piano or anything but what a difference!  The route they have decided to go down with his leg is a splint, and that comes mid March, then I am looking forward to him being able to have trainers like Daddys instead of him having to have his boots.

So all in all, Harry has come on leaps and bounds, and he is a wonderful little boy and my best mate.

These Blogs will be updated now every week so please get as many people as you can to join.  Thank you very much and love to you all.

Paul x

 
At Long Last! PDF Print E-mail
Written by Administrator   
Tuesday, 16 June 2009 00:00

Hi everyone,

First of all I must apologise for not updating in so long but everything has been such a whirlwind over the last couple of months. Finally though, things are starting to settle down and we are getting into a routine.

Harry is doing really well - he is sitting unaided and is now rolling both ways. He is even weight bearing on his right hand when he is on his front and has attempted bum shuffling bless him.

He has had his eye sight tested and his hearing tested and everything was fine. He has also got his new peadro boots and his standing frame and also his new bath seat.

We have been riding with donkies which was fab. We have started theraplay and also portage which are both going really well. We have a place in September at the Hawthorn Centre also.

I have gone back to work 2 mornings a week so Harry has started nursery (mainstream) which he loves, it is bringing him on loads.

So all in all after a daunting start on our journey, we are making excellent progress so much so that at Harry's 3 month review his consultant said that she didn't need to see him for another 6 months......she also said that his speech is at a level of an 18 month old.

We are also looking forward to a holiday at the Daisy Chain Project in October half term which is a charity in Blackpool that provides holidays for children with special needs.

If anyone wants further info on any of the above please do not hesitate to email me.

I promise the next post will not be so long in coming!

Shell, Paul, Grace & Harry x

 
Progress PDF Print E-mail
Written by Administrator   
Wednesday, 08 April 2009 00:00

Hello!

Well it's been a while since my last post but lots to report!

Harry had his assessment 2 weeks ago where we met his team.

Unfortunately the speech and language therapist was not able to attend the assessment so she came to the house to do a seperate assessment a couple of days before. She thought that Harry was where he should be for his age and in some things actually ahead so we were delighted at this outcome (we always knew in our own minds that this was the case anyway).

At the actual assessment, Harry first met his occupational health therapist and his physiotherapist. It was basically a play session for Harry which he loved and managed to charm the professionals who were all female! Afterwards  his consultant and the psychologist took a turn.

After this we had a break where we were given Harry's MRI results. The damage to his brain was minimal and affecting his movement and we were told that they think the damage occurred during pregnancy. We weren't actually shown anything, the consultant just verbally told us and drew us a diagram of Harry's brain.

After the break we all met up again and discussed what will happen going forward. Harry starts a course of physiotherapy and occupational health therapy which they are doing jointly at home. The course is for 6 weeks. Harry also has to have an eye test and a hearing test. He does not need to see the speech therapist for 6 months. We have also got a few appointments with the health visitor and his specialist health visitor/psychologist.

So we have made lots of progress since my last post and Harry's first physio is on his first birthday 14th April bless him.

We now have the lovely task of filling in his DLA form but luckily our specialist health visitor is going to help us with that as it is a little bit daunting to say the least!

Anyway, will update again next  week after his first physio and his first birthday as no doubt there will be loads to report.

Bye for now x

 
MRI Day PDF Print E-mail
Written by Administrator   
Thursday, 12 March 2009 00:00

Hello! Well, we survived today after weeks of worrying........ I am going to try and remember everything that happened and get it down so anyone reading that has to go through it still will know what to expect. For those of you that know me well I will be totally honest too!

We all got up at 6am this morning and by 7.45 were parked at the hospital. We got up to the ward for just before 8am as we had been asked to do. We were in a day ward in a room with 6 beds all of which were filled by just after 8am. Harry was the youngest, there was a little girl at 16 months, 2 little boys of about 6, a girl of about 11 and a young lad who was about 14.

Firstly we were allocated a nurse who did loads of paperwork with us and put Harry's wristbands on. Another nurse then came and put some magic cream onto the back of Harry's hands just in case he needed a canula fitting. The anaethesist then came round to explain what would happen and issue consent forms. She told us that 2 of the other patients would be going first as they were having CT scans not MRIs. We then had to wait.....and wait.....and wait!!! After copius amounts of GMTV, Jeremy Kyle, This Morning and Judge Judy, Paul went to see what was happening. There had been 2 emergency admissions which had delayed everything but we were told that we would definitely be going down. The little girl at 16 months got sent home as there was not enough time to do her - this was heartbreaking to see as her Mum and Grandma were extremely distraught as you would expect (I know I would have been after weeks of worrying).

Finally at about 12.30 they came to fetch us. We were allocated a health care assistant who took us down to the MRI department and stayed with us. Once down there we didn't wait long. Only 1 of us were allowed in to the room with Harry. I went with him. I had to hold him in my arms whilst they put the gas mask onto his face. It wasn't pleasant but he was soon asleep. I managed not to go to pieces completely. The worse bit was leaving him on the trolley and walking away.

We were told to go and get a coffee and come back in half an hour. I am glad we followed their advice. Half an hour soon passed. Back in the waiting room we got told that he would soon be coming round. Paul was distraught to hear Harry crying knowing we weren't with him but secretly I was just glad to hear him crying as it meant he was ok. They then fetched us into the room - he was a  bit groggy and disorientated but he soon managed one of his special smiles for Mummy and Daddy. I got to ride back upstairs on a trolley as I was holding Harry who weighs a ton at the best of times.

Once back on the ward we were allowed to give Harry a bottle and some weetabix - that was soon devoured, he was starving bless him. After that, they came to check his temperature and his pulse and after an hour or so we were told we could go home. We were given an after care leaflet and a letter to take to our doctor. We were told that the results would be sent to Harry's consultant and that she will contact us from there.

So there, that's where we are up to. We are all shattered to say the least but glad that today is over and gearing up for the next instalment.

Shell x

 
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