Forgotten what sleep is!

Hiya, just when it was all going so well Patrick catches yet another cold!
Bless him, he's poorly again with a really bad chest, blocked nose, bad cough, the usual really, which means that he has even more desrupted sleep than usual so Martin and I are walking round like zombies!
I've been feeling quite sad this week as well which is probably a result of being so tired but I'm starting to feel the strain of waiting for the next scan (which we still don't have a date for). We know he'll be having one within the next month or so and we are both starting to feel a bit nervous and anxious about it. Patrick has really shown some progress since the last scan and we have been really encouraged by that but as the next scan draws nearer I am starting to prepare myself for bad news, I'm getting paranoid that he's losing skills. I was upset yesterday as for a few days now Patrick hasn't been feeding properly which is really unlike him, I've been stressing out thinking 'maybe this is the first sign?'. When I talked to Martin about it he made me see that actually, Patrick isn't eating properly because he's refusing the food. I'm trying to feed him, he has a few mouthfulls then clamps his mouth shut and just wont take any more, for whatever reason, he has decided that he's not going to eat and he's not going to open his mouth for anything. If he had lost the ability to eat, surely he wouldn't be clamping his mouth shut? I guess we should feel encouraged that he's able to make a choice, even though it's frustrating when he's not finishing his food, he is pretty poorly at the moment so he's probably just not in the mood for food. He's just keeping his Mum on his toes!
I've been giving myself a hard time for having negative thoughts about how Patrick is doing, but the reality is that until we know differently Patrick has a degenerative condition so on that basis I think I should be allowed to have a few days when I feel sad. It seems that for the last 3-4 weeks Patrick hasn't really made much progress which is frustrating but as we've seen in the past, he'll learn one new skill, first it was holding his right arm out in front of him to examine, he did this all the time for weeks to the point where I started to think it was an involuntary movement until he learnt how to clap, then he stopped waving his right arm and now he claps all the time! I'm sure he'll find something new to amuse himself in his own time. I think as we're told he'll start losing skills we become desperate to see him gaining new skills to prove them wrong, at the end of the day we haven't a clue what his limitations may be or how much he will be able to achieve which is really difficult to deal with. There are no books or websites we can look at to find out what the next milestone should be, we have to let Patrick do things at his own pace and just wait until he surprises us all with his next trick!

On a happier note, we had a lovelly Easter weekend, had Sunday roast round my Mums house and got way too much chocolate! Isaac and Patrick did an egg hunt around the house as it was raining (well I say that Patrick did it, his Uncle Bruce ran around collecting eggs with Patrick in his arms but I think that Uncle Bruce had more fun!). Also in the news is that Patrick's biggest brother Ashley is coming home from the canaries next month. He's been out in Gran Canaria since last November but has now decided he wants to come home, so we'll be back to a full house!

That's about it really, we're having a chilled Easter holidays which is just what's needed really. Oh, nearly forgot, we've just put an order in for a new car, well I say it's a car, it's actually a HUGE wheelchair accessible van, a Renault Master Versa which is being custom fitted out to suit our needs, it's fab as it has an electric lift at the back so Patrick can be wheeled in in his buggy and the buggy is strapped in place. The sales rep came out a few weeks ago and we played about putting all Patrick's equipment in which still took some doing even in a big van but we managed to get it all in with room to spare so that will make things a little easier. We won't get the van for around 16 weeks so just in time for the summer holidays.

Anyway, that really is it for now, I'll update some time next week. xxxx