Busy, Busy, Busy! (Still)

Hiya, it's a hectic couple of weeks with appointments every day for various things. Last Tuesday was a good day with both our new van and Patrick's new buggy finally arriving. The van is mega! So comfy and much easier to drive than I thought it would be, with a lift for getting Patrick in and out easily in his pushchair it makes life easier for me and minimises the lifting and carrying. Isaac loves the van mainly as it's big enough for him to run around in and kick a football in and he gets to sit up by the driver on occasions.

Patrick's new buggy is really nice, I'm not sure it will fit him for too long as they ordered the smallest size for him and it doesn't allow much room for growth (although they assure me it does). The only problem we have with the buggy is that the NHS wont supply a rain cover or any accessories with it so we have to buy our own. Because of the way the buggy is designed a standard rain cover wont fit it so unless we never go out in the rain (impossible in this country) we are going to have to try and buy the rain cover that is made to fit. I have just been given a quote of £207! This includes the price of a retractable canopy/sunshade that you have to buy in order for the rain cover to fit, it's ridiculous really and we are having to apply to the Family Fund to raise some money towards it which is madness but we haven't the choice.

Patrick started his hydrotherapy last Wednesday. It went ok but was a bit frustrating as we have to take him to Poole hospital for the session, it takes us an hour to get there and get parked and he only had 10 minutes in the water! The sessions are supposed to last 20 mins but he started to get stressed out so they got him out early. He was really enjoying it and was relaxed until the therapist kept dunking his face in the water (all part of the exercise I'm sure). He's only been given a 4 week course of hydro as demand is high so I can't really see how 4 sessions of 10-20 mins is going have any long term benefit but we'll see.
On the same day we had to take Patrick over to Southampton hospital for his regular check-up with his neurologist. We discussed his medication, it's still difficult to say whether this new drug is working as Patrick has had some bad days and some good days in no particular order, I'm sure his teething etc has a big effect on his seizures and Fiona said we need to work towards getting him to a point where teething and colds don't effect his fits but we're not there yet. We're going to persevere with the new drug and start taking him off the vigabatrin again in a couple of weeks. We'll be trying the ketogenic diet (that I've mentioned before) in the future, we want to try and wait until he's two which should be ok if he stays like he is at the moment and doesn't get any worse.

Patrick had a really good portage session this week, - when he woke up enough to participate! He is really starting to explore things with his hands which is good. Up until recently if you put his hands on anything to get him to feel it he would show no response, his hands would stay closed and he'd not try to feel it, now if you put his hand on something his fingers open and he'll make an effort to feel it, this is a very small step forward but as we've said before, any progress is good news.

We had a bit of a setback on Friday as we made a call to the housing department to chase up the medical panel's decision after we reapplied recently. It turns out that we were given the wrong information and the whole process of reapplying was a complete waste of time as we already have the maximum points that can be given for medical reasons, the panel weren't able to do anything more. We were led to believe that a panel could look at our case and make us priority or award us extra points but that isn't the case. We have been told that we have 65 points which is a 'reasonable' amount but that there are many families with higher points than us so with only around 2 properties becoming vacant a year, basically we have no chance. The only way we can get more points is if we plead poverty and go back to panel saying that we are struggling financially. Someone from the housing dept wants to come and see us to discuss our finances but to be honest because we're so careful of what we spend our finances are in fairly good order.
We are seeking help and advice from other sources at the moment and know we have a long battle on our hands, we have to keep trying though as we really are up against a brick wall at the moment.
This week is much the same as last, busy, busy but we did have a couple of hours off on Monday with Pam, Patrick's carer round to give us a break. Patrick is having his hips x-rayed tomorrow, this is standard procedure apparently for all children with development problems as your hips aren't fully developed at birth and rely on exercise and movement to strengthen the sockets, as Patrick hasn't been able to do this they need to have a look and see if his hips are ok.

Anyway, it's past my bedtime (which is 8pm these days!) so I'll leave it there and update at the end of the week.