Sunday, May 8, 2011

Poor neglected Blog

I'm sorry I abandoned you for so long.  Honestly, I didn't realise that so much time had past since our last update.

My last post was referring to us fund raising for Joshua.  We have started with great success.  We are about half way to the target of £3,800.  We have had donations from friends and families.  David has undergone a sponsored wax; raising well over £700.  A colleague of David took part in a kayakathon and raised £145.  Strangers have knocked on our door handing over cash and cheques. David managed to get a plug on TalkSport Radio and a few more donations came in.  My best buddy, Liz, is organising a quiz night. So hopefully  another push towards the target.

Before this year is out Joshua will be having another intensive block of therapy at Bobath.  Without a doubt!

Saturday, March 19, 2011

Let's face it, the PCT are so adverese to funding Bobath treatment. So, David and I have decided to raise the money for him. We've created a website to help. We are asking our local clubs, friends, colleagues to support him. If you've stumbled upon this page, perhaps you too could drop by and donate a few pounds to help him.

Thank you
Tara xxxx

Monday, March 14, 2011

Back to the Bobath

Joshua was lucky to be selected to be a volunteer at the Early Intervention Programme. So today we started a 6 day intensive programme. He has been assigned two lovely physio's who are going to continue the work of trying to improve his upper body strength, so lifting his head and trying to bring his arms into use more. It's difficult for Josh though because he hasn't the visual stimulation. He had a wonderful session but unfortunately he had a seizure at the end which went on for about 15 minutes. But it's only been 3 days since he started his anti-epilepsy medication (Carbamazipine) so hopefully we'll have them under control soon.

Friday, February 4, 2011

Bobath Centre for Children with Cerebral Palsy

Joshua was lucky enough to be offered a 2 week treatment block. Which we completed today. I have to say that this post is about to be a complete rave about how good they are.

Joshua was assigned a physiotherapist on the first day. Upon attending it was obvious that the PT had read all of Joshua's notes and discussed him with the Senior PT that he met at an earlier consultation. She watched Joshua's movements and communication intently.

On the second day we were joined by an Occupational Therapist, who spent a lot of time looking at Joshua's vision.

Each day Joshua's tolerance of touch, positions and activity increased.

For 4 days we were joined by a Speech and Language Therapist, who spent a lot of time helping Josh to play, showing us to wait for Joshua to respond. And what to accept as a response, be it verbalising, a smile, or even withdrawing and crying.

We spent a lot of time concentrating on Joshua's arms, trying to bring them forward to make play more accessible. Trying to bring his shoulders down, to try and reduce the tone across them.

There was a lot of tummy time, trying to get Josh to lay with his arms supporting him, this enabled better head control.

We spoke about feeding, sleeping, playing, relaxing.

All the staff are amazing, and they all care so much.

Another brilliant factor was meeting other parents, sharing a cup of tea and listening to others experiences.

Josh will be attending again in March to attend the Early Intervention Course. This should reinforce everything he's already learned. And the next goal is to obtain PCT funding for another 2 week block in 6 months. Fingers crossed!

Like I said, this is a post of praise. It's also a post of thanks and admiration.

Tuesday, January 11, 2011

My friend had her baby (in October)

Ok, ok, it took a while.  I've finally organised them to visit, tied nicely in with me finishing the babies blanket.
Ripple Blanket
I've sized it so it can be used in the pushchair or swing.  I'm happy with how it turned out.  I hope the little lady likes it. 

Monday, January 10, 2011

A Ray of Sunshine

If Friday was a glimmer then today we have a ray of sunshine.

Josh has been sleeping slightly better at night 4-5 hours straight.  This is amazing, considering for months the best he has had is 2 hours straight.
Josh has still not had a breast feed since Friday morning (before the SALT).  He has had a few ounces of breast milk as I've been expressing but he has had it all from the bottle.  I am a little concerned about the amount of fluid he is taking but he is have slightly wet nappies, he isn't lethargic and he is eating his jars very well.  Dave said I should stop panicking.
Josh's tone has not been as increased as previously.  He does still get frustrated and extends through his back and legs but not as frequently.

Joshua had to have that awful Electro Physiology test today.  It takes 2 hours and he has to have contacts placed all over his head.  It's not very pleasant for him.  I was pleased though, because a couple of times he purposefully swiped the contacts from his brow, much to the technicians dismay.  It was great to see him do something with meaning.

In relation to the test, I'm not expecting any changes just yet but I hope that with the light treatment and Great Ormond Street Hospital Visual Development Clinic that things will slowly change.

Friday, January 7, 2011

A Glimmer of Hope

At Speech and Language today, Joshua closed his mouth on the bottle (Haberman) and suckled, just for a second but he did it.  Then after a bit of fussing he did it again!  So clever, so needed.

So we are to strike whilst the iron is hot and try to progress to the bottle permanently.  It is going to be hard but seeing him close his mouth just reinforced that he can do it.

We felt so lifted by this small accomplishment.  We've had very little progress of late so this seems like a huge step forward.

Unfortunately, not getting the breast gave Joshua the right hump.  This meant he was not too pleased to see the physio's.  The Occupational Therapist also arrived today to measure him for a chair.  (I hate that he needs this stuff), so he moaned, screamed and cried during the entire session.

The poor boy also cut his first tooth last night, after weeks of it being just about ready.

So fingers crossed, this bottle malarky works and I can get back on the meds.