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Thursday, 11 September 2014

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.

Sunday, 24 August 2014

Donations

I just want to put a quick post up to say thank you to all of our friends and family who kindly made a donation following my Mother's funeral.

We had agreed that the money should go to a cause that was important to my Mum and so we picked Cerebra, a charity dedicated to helping children and their families with disabilities. I know from experience how helpful Cerebra has been in providing us with vouchers towards much needed speech therapy. Most recently they have developed the Go 2 Seat, an invention that Zacky tested out and has helped many families just do normal things like the supermarket shopping. A brilliant and growing charity that deserves some more recognition.

The generous donations reached well over £1000 and to that we are very grateful.

Here is a link to an article which featured within Cerebra's news page.


http://www.cerebra.org.uk/news/Pages/InmemoryofBarbaraPrice.aspx


Thank you everyone, I know my mum would have been delighted. 

Saturday, 23 August 2014

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.

Wednesday, 30 July 2014

Zero

Do you ever get the feeling you are getting left behind a little? Abandoned perhaps? 

I do. Especially with the NHS. God love them, sometimes they are fantastic but 75% of the time they are just useless. 

When Zack was a baby we were never out of the doctors office, it was appointment after appointment. Now, he is school age it seems the importance or urgency to treat him has lessened. 

I shall give you an example, Zack has not had physiotherapy at school or at home for months. The physiotherapist left so now there is only one covering the whole of our area. Therefore my son receives zero physiotherapy. This has been going on since around May. 

Example two, we have been trying to get a sleep study organised at home for the past two months. We have just organised and completed that study over the last two days and this was only due to an irritated phone call and threats of letters of complaint.

Example three, and perhaps the toughest situation, is that Zack's epilepsy is not under control. We did have a blip for a week whereby he went to having no seizures but now we are back to the old school of single dipity doos rather than clusters. As we are between consultants appointments are not very forthcoming, I mean seriously how long do you have to wait for a second opinion?

You can probably guess from this post that I am none too happy with how things are progressing. Is this the future? Is this the future for Zack as he gets older?

I remember talking to a mum of an adult who was twenty years old and he had severe special needs. I asked her what were the services like in adulthood. Rubbish, she replied, you get nothing, it all filters out.

Does this mean that babies with special needs deserve our attention and services more than the growing child? Is it assumed that as a child makes no progress they do not need further support and help?
I hope not, because to me that is a society that gives up and that is something that doesn't happen in this house. 

Sincerely pissed off with the NHS. Sort. It. Out.

Monday, 14 July 2014

Nanny Barbara

I haven't blogged for a while because over a month ago tragedy struck. My mother, Zack's Nanny Barbara, died suddenly from a heart attack on the 5th June.

Such monumental news hit me side on the face and took my legs from under me. 

Zack was lucky to have known his nanny Barbara, she worshipped that little boy. She would come in to the house pick him up and just cuddle him, smothering him with kisses. I used to joke with her that if she looked after Zack constantly then he would get nothing done because all she would do was cuddle him.

As you can imagine the grief has been both shocking and devastating. I miss my mum. I miss phoning her to tell her about the small little achievements Zack has made or about the ridiculous appointment I've just been too.

In my heart I know she will always be with us and I always feel her nearby. I wish she was still with us but I take comfort knowing that Zack will have an Angel watching him. I'm sorry I cannot write any more, I just don't have the words.

In memory of my Mother, Nanny Barbara. We love you. We miss you.





Tuesday, 3 June 2014

Sulky chops

Oh did I say they weren't seizures, oh, hang on, no, they are most likely to be seizure related.

Huh?

Yeah, huh?

We went to see Zack's neurologist who explained that what Zack is doing is more likely to be related to his seizures and should be treated as though it his epilepsy rather than a movement disorder. Oh for goodness sake......

Whilst we were given the correct information that the episodes Zack was having during the EEG did not show a spike in electrical activity it doesn't account for what could be happening deeper down within the brain.

What I read is this. We haven't got a clue what he is doing or why, so we will just try the usual path of drugs and if that doesn't work...well, thank God we haven't got there yet.

On a positive note, he isn't having as many episodes, they are getting lighter. The plan is now to wait 7 to 10 days and see if everything goes back to normal. If it doesn't then I think we may be introducing a new drug. Great.

And with that news, Zack went back to school on Monday. I was my usual concerned self as I left him in the very capable hands of team school, but I was worried about him all day. I needn't have been concerned, as sulky chops (yes, he wouldn't even look at me when I dropped him off) was very happy and had a great day. Oh, and only one of his seizure (non seizure, what the hell is it) episode.

Brilliant. He decided on the way home, to provide both Scarlett and I with an example of all the little seizures he had saved up whilst being at school. Little git.

It's good to have him back to almost normal. Lots of laughing, smiles and chats. He is now getting particularly good at saying hello. I must record that to play on here at some point. 

Started a new bedtime routine tonight. It goes like this. He gets put in his bed, I get in with him. We have two stories, then night, night, I leave. He had about 20 minutes of tantrum. It's gone quiet now. I must go and check, hopefully he is okay and fast asleep. And I hope the cat hasn't sneaked in.