Keep a watch on it

You know that botox stuff? Turns out it's quite good. Normal service has resumed for Zack. Back to full on lying across me cuddles, back to standing frame, back to straighter leg (not entirely straight but much better) and back to school.

School. A new class and what's more, a new school. Kind of. The old school that he was in has moved to a new site which is lovely except for the parking facilities and the fact that it is absolutely crazy in morning.

I went in with my usual million and one concerns, Zack went in and proceeded to sulk nor speak to anyone. He has started back with two half days. Today's half day he came out looking shattered but apparently had a great morning. I am hoping this continues.

His epilepsy remains difficult. He is still having bouts of seizures, one day they are not lasting as long the next he is having longer sessions but less of the amount of clusters. We continue to keep a watch on it and I have found a great app on the Epilepsy Society website that you can use to keep a diary of seizure activity.

I hope his leg remains well but who knows. When the botox wears off it could go back to how it was or remain normal again. I am hoping for the latter.

Bent leg

As I currently type this I have a little boy taking a nap on my bed having yesterday been under general anaesthetic for a leg that would not bend.

For over two weeks Zack would not bend his left leg he kept it guarded and whenever we tried to lower it he would cry, great sobs and howls. Zack is a tough little guy, he can tolerate quite a bit of pain so I know whatever the problem, it was serious.

Thanks to a great consultant and team at Alder Hey we managed to get in for some botox treatment to help alleviate the pain of his bad leg. Whilst the problem does not seem to be hip related as is common in children with cerebral palsy, the consultant is almost convinced it is muscle related. 

Zack now seems more comfortable, so God knows what pain he was in before. He is still white as a sheet and won't straighten his leg entirely but it is an improvement.

Following on from the leg problem, Zack has introduced Dystonic movements to his bag of tricks. What this essentially means is his other good leg will all of a sudden go straight out in front of him, and his two arms would straighten across his body and he would be stuck. Stuck in a muscle protest that he can't control. It's horrible to see and awful to know it is causing him discomfort. We have been prescribed Diazepam to treat them, so far we only give it him at night, which essentially knocks him out fast asleep. Giving us all some respite.

I can't believe how difficult this year is becoming. I thought this was going to be a great year, a happier, easier year but it is turning into our year of hell.

I try to be upbeat in this blog but equally I would be lying if I didn't also tell the truth of how dark things can get sometimes. I know that everything is relative to all people but when I hear parents complaining that their child has had a cold or a tummy ache I just think you have no idea. No clue, how easy it is for you. 

In fact the differences in our life and that of a 'normal' family become ever so clear when you have those friends over. They try to get it, they try to show the right amount of sympathy understanding but they are so far from understanding. I think some of them just see the downright awfulness of the situation. They don't see all the good bits with Zack. That's very annoying. Equally its such a relief that I have friends in a similar position that understand all the difficulties and stress that comes with our children. And when they nod their heads in agreement it isn't with an  'aaaah yes it must be awful' smile but a 'shit yes, it's bloody hard but you'll make it through' nod. 

Truth is, sometimes I wonder how we will make it through this tunnel.