Zack has discovered the best place on earth

Friday didn't bring good news. We had a call from the doctor to tell us that the little episodes Zack was having are most probably seizures. As they weren't distressing him we decided between us to leave things until Monday when the doctor speaks to our consultant about it all. 

I was upset at hearing the results but I suppose it was inevitable, given Zack's very rough start, that he was not going to get away without suffering some form of epilepsy. 

The trick now is to find some form of medication that stops his seizures but doesn't have many bad side-effects. ie. doesn't sedate him so much that we can't progress with him. 

Having done a little bit of research and in speaking with other parents it seems that although there are side-effects to the medication some people have found that when they get their child's seizures under control their development has improved greatly. One parent has told us that infants who suffer infantile spasms have a specific brainwave pattern that is pretty much making the brain behave chaotically, therefore, once this is under control then you can start moving forward.

I am glad that Dan and I have picked up on this pretty quickly, I think the longer you leave it the more damaging effect it can have on the brain. I am going to ask the doctor for an appointment with a neurologist so that they can explain in detail the ins and outs of it all and what this means for Zack. Mind you I expect that this will be all doom and gloom as doctors don't usually have any words of hope or guidance for you, you have to find that deep within yourself.

On a lighter note, Zack has discovered the best place on earth, apart from on my shoulder that is........he has been spending time in his new little room. Yes, the little box arrived this week. It is basically a box with three sides and a perspex top with holes in it. It is based on the Little Room theory by Lilli Nielsen:

http://www.lilliworks.com/prod04.htm.

Dr Nielsen was an expert in educating children with multiple disabilities and the Little Room is used to allow babies to develop their senses within a smaller contained area. Oh, check out this link for more details, it will stop me babbling on:

http://www.lilliworks.com/about_dr__lilli_nielsen.htm


So, I popped Zack on his changing mat and slid him inside the box. I had already hung three little toys down through the lid. There was some protest at first but then he started moving his arms about and kicking his right leg. Vision lady (who delivered the box) explained that babies start to reach out by first accidentally hitting things, after a while they then realise that they can control their own hands and arms in order to grab and reach for things. 

Zack stayed in his little room for a good 30 minutes bashing away at his toys, every so often he would stop and turn to his left to see what he was hitting on the other side. Loving the box and we have until September with it, then it's over to Grandad Price to build him his own (even though his Grandad doesn't know this yet.)

Today in Warrington, it was Disability Awareness Day. This is a huge event for everyone and includes lots of exhibitors with information and advice, as well as your usual entertainment of pub singers, dancing girl groups and some bloke under a tent with several birds of prey. We picked up lots of information about various groups and charities that can help Zack. One that looks interesting is Stick and Step, it's a charity in Liverpool that offers free therapy to children with cerebral palsy. They have a mum and babies group which I am hoping to take Zack along to so we can find out what it's all about. 

Zack's big operation is next Wednesday and I am still terrified. Dan isn't and Zack certainly isn't but I can't wait for it to be all over and to have him home with us. I pray every night that he will be okay. I know it is only a short operation but that isn't going to stop me thinking something awful could happen, I may be being a little morbid and negative but that's my baby boy I am giving to someone else to look after. He was in hospital for seven weeks of his life and going in again, even for just one night, brings it all back. Roll on this week I can't wait for it to be over with.

Comments

Anonymous said…
Hugs. Regarding the disability awareness day is there one down here in Surrey that I could go to?

Katherine

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