Hiya, it's been a pretty long week really with a few disappointments along the way. Firstly, we still haven't been able to start Patrick on his new medication. Patrick started the week pretty badly with lots of strong seizures and we were told on Wednesday we'd get the new meds Thursday, then on Thursday the pharmacist wasn't in so we were told Friday and then we were told it was sorted and that the hospital would be supplying the drug for the first month and that they would call us to arrange it but that didn't happen either. We can't do anything over the weekend so I hope we'll hear tomorrow now.
We STILL don't have Patrick's new buggy! The last we were told was that they had the buggy but were waiting for some supports that would take a week to come in, that was 3 weeks ago! Every week they say they're due but I think they're just fobbing us off. We've just found out our new Van is ready for delivery, it amazes me that they have been able to custom fit a 6 seat Renault Master from top to bottom with various pieces of equipment, a van that was ordered a good few weeks after his pushchair and the van is ready but the pushchair isn't, it's ridiculous really.
Patrick had physio on Thursday, unfortunately it wasn't the best session as he was really sleepy from a few bad nights fitting. He was examined by his physio and OT and his portage worker was there too. They're not too happy with his limbs, his legs and his arms are a little tighter than before, even though we've been working on them doing lots of stretching exercises. I'm pretty sure that his seizures don't help. When he has a strong seizure his arms and leg muscles contract and his arms bend fiercely at the elbow and his legs raise off the ground. As his fits have been quite bad for the last month it's got to have an affect. They have made the decision to have some arms splints made for him in the hope they might straighten his arms a bit. I'm gonna have to take him in some time over the next month. They let us take home a large therapy wedge to lay him on and they're going to put his name down for a corner chair that will help him sit in an upright position as he is showing more potential in this area. He starts a 4 week course of hydrotherapy next month that will hopefully help loosen his arms and legs a bit, he only gets about 20 Min's in the pool once a week though so I'm not sure how much good that will do.
We've taken the decision to enrol Patrick onto the Brainwave programme. This is an intensive programme of therapy aimed at speeding up the development process in Brain Injured children. They do this by designing a programme of exercises and activities that we can practise at home. It works on the principle that with enough repetition the brain will basically start retaining information and dormant brain cells can be 'woken' and used to learn these new skills. They cover all areas of development and the programme is totally structured so we know exactly what to do in what order and why. I think that this approach although had work (we have to commit to about 10 hrs a week) will hopefully work for Patrick. We have an appointment booked in September for his 2 day assessment (we get to stay down in somerset for a couple of nights) they will use that time to examine him and come up with a programme, we will then have to take him back every 4-6 months to be re-assessed. I have added a link to their website if anyone wants more info, just look at the list of links on the bottom left of the page.
Patrick is still obsessed with eating himself! He has lots of little cuts on his hands where he has chewed them and has taken large sections of skin off his fingers, he must have tactility problems because he doesn't seem to hurt himself when he's chewing and he has some sharp teeth! We've tried lots of things to stop him doing it or at least to protect his fingers from damage, plasters and socks on his hands but these just get wet and make his hands sore or they fall off. I have just ordered him some baby Ski mittens! I'm hoping that as they are padded and waterproof they may just stop him doing any more damage. It's a bit warm for gloves and a shame to have to cover his hands up but we need to find something that works.
That's about it really, we are a bit quieter next week and then the week after we're off to Naomi house for a few days. I'll let you know if we do start Patrick on his new meds.
Hope everyone is well, Love you lots, Gem xxx
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