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Busy, Busy, Busy

Posted Sep 11 2009 2:10pm

Hiya, been a hectic couple of weeks with appointments all over the place.
We took Patrick to see a rep' over at the Child Development Centre to have a look at a new 'early activity system' from a company called Squiggle. It's pretty hard to explain but it's basically a play mat that has additional support, it's easier to post the link than to try and describe it! We also looked at a couple of standing frames for him but neither were a perfect fit for him, apparently there's hundreds of different ones on the market to try so it might be a while until he gets one of those.
We then had to take him to the Wheelchair clinic to see a couple of 'special needs buggies'. Patrick has been fitted for a special buggy called a Phoenix, it's amazing what they can do these days as at first glance you wouldn't know that the pushchair was any different to a normal one but it's full of extra support and it will be fantastic for Patrick. At the moment he doesn't have proper support in his pushchair and has to stay reclined or he'd just 'flop' forward. In the Phoenix however it gives him the support to sit upright and he'll have the freedom to move his arms and legs properly. One thing we did want is for the buggy to be rear facing so we can see him properly, as we need to be able monitor his fits. Patrick's fits can be hard to spot so if he was facing away from us we'd miss them. Anyway, the company that makes the buggy are actually going to custom build it for Patrick rearward facing with a bit of a tilt so we can recline him if he's sleeping. We should get it in about 6 weeks. Thank goodness for NHS as these pushchairs cost thousands, we're very lucky to get such a great one, it's so new on the market it's not even on the internet so I can't post a link!

As you may have seen from the e-mail thats been sent round with some photo's, Patrick had his first pre-school session at Julia's House. This went really well and Patrick was really relaxed there and let his carer Pam look after him without a fuss. He was able to spend time in the sensory room which he seemed to love and he even did a painting! We stayed with him for his first session but next time we go we might slip out for a coffee which would be nice.

I finished the 6 week Parents course I was doing. I really enjoyed escaping once a week to attend the sessions and will miss it, it was a great group of parents, all with different experiences but we all got on well and had quite a laugh, hopefully we'll keep in touch as it is nice to talk to other Mums who really understand.

Thursday was hectic as we had a Portage session with a Speach and Language therapist at 9am followed by his development review at Christchurch hospital at 10:30. The speach and language therapist was quite pleased with him. She was able to hear him making a bit of noise before he fell asleep and she seemed to agree with what we've been saying, he's deffinately making progress as he is making a good variety of sounds, but he seems to be about 4 months behind. He has a lot of work to do but she was impressed with him really, he has just learnt how to do pat-a-cake, you have to bring his arms forward for him but he can just about clap his hands together. During the session we did pat-a-cake and when we stopped he gave us a deffinate look that said 'again' and kept clapping which was fantastic, he can't vocalise what he wants but if you look carefully you can see he's trying to communicate in his own way. We've been given lots of homework and ideas to try with Patrick, we're going to look at using sign language with him as well.

Patrick's development review went quite well although we wont get their report for a few weeks. Patrick was seen by his paediatrition and physio who both had a good look at him and could see a big difference from 8 months ago which is great. There is still an awful lot that's not right but the last time they assessed him properly he litterally couldn't do anything, he just layed on the floor and couldn't even see them, now he's rolling over, laughing, looking around the room and is responsive, all things that we didn't know would be possible for him.

I managed to speak to Fiona, Patrick's neurologist on Monday. We have been given a clinic appoinment on 28th Feb and she is putting in a request for another MRI. They are still waiting on some results but have had some back that are fine.

For some reason Patricks in-built alarm clock is playing up at the moment and he has been waking up at 3:30am! Nothing seems to settle him back to sleep, he's just wide awake and noisy from 3:30 onwards so as you can imagine, Martin and I are shattered. It's half term now so we don't have any medical appointments for a change. We're planning a nice day out on the farm for Patrick's birthday so hopefully the weather will stay nice.

Anyway, I realise that this post is dragging on now, I blame my tiredness for my ramblings! Hope everyone is well, I'll update with some birthday pics' later in the week.

Lots of Love, Gemma xxx
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