I thought no more of it

Bad news first.

Stupid Disability Living Allowance form is in front of me. Or as I like to call it the book of 'What Zack can't do'.

Yes I have to fill it in once again. Tell them all about the fact Zack can't walk, speak, eat, or see properly. Makes him sound like he can't do anything. I tell you, the Zack on paper is nothing like the Zack in reality. Still, tis but once a year (my Christmas treat) and upon completion Zack can continue getting benefits that we use to buy him equipment that help him with day to day living. 

Moan over.

Good news now.

Some Primary Care Trusts will fund a block of therapy at Bobath. This is a centre which specialise in physiotherapy for children with Cerebral Palsy, our physios are meant to be Bobath trained. 

Here is a link to their website tells you lots more about it all.

Bobath

Well a while back I asked Zack's consultant if she would put in the application for funding a block of therapy for the Pants.  I thought no more of it and then on Friday evening I got a phone call from her saying that they are going to provide the funding for him to go along for a block of therapy sessions.

Yaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaay.

Very happy for The Pants. Not so happy having to spend two weeks around the Village. Still we can make it into a little holiday. Every cloud and all that.

I am still ticking the same yes he can't do that on his own boxes.

First things, Zack baked. 

I ate the cakes! Delicious.

On to more important things.....


Zack and I went to check out some wheels the other day. You see he has a lovely Quinny pram that he doesn't much like any more and a really cheap stroller that he loves but doesn't support him very well. He tends to end up leaning to one side in it, so we prop him up with some rolled up blankets which isn't a good look for such a cool little dude. 


We went to visit the good old NHS Wheelchair Services and after being kept waiting for half an hour we met with two very pleasant physios one who cuddled Zack a lot and told him what lovely hair he had and another who looked through a catalogue (Zack decided he'd do a big spit cough in his face, well you should pay more attention to him.) 


It was decided that a Tom Cross Buggy would be best for Zack. I asked if there was a choice or if I could put some pennies towards one. They advised me that whilst I could as they offer a voucher scheme, it might be best to wait a bit as Zack is still little and growing. I could end up wasting my money on something that might not be of any use to him in a years time. Whereas if they get it for me and he doesn't like it, then I haven't lost any money. Also if anything goes wrong with it then all the repairs are done at the offices. 


Here's a pic of one (scroll down until you get to Tom Cross Stroller), the bits of padding and support can be taken away depending on what the child needs, for instance Zack won't need a middle pummel bit. 




Tom Cross Stroller



We just have to wait for six to eight weeks until it arrives. I am hoping Zack will like it as it will offer him much better support and perhaps mean we can go out for longer walks too.


After that appointment we dashed over to a physio session. All the stretching and rolling about on a gym ball meant that Zack decided to throw up a bit of food on the physio and mat. Well he was doing a lot of lying on his tummy. 


Talking of this puking, the new food we are on is finally going okay. He is still sick but the quantity is a lot less. I have stopped all his reflux meds as they were not making one dot of difference and have finally got an appointment to see the gastroenterologist at Alder Hey. I am hoping we can try something to stop the sickness and to get to the bottom of why it all got so bad after he was ill.




I am having to fill in Zack's Disability Living Allowance form again. We have to do this every year and one year on I am still ticking the same yes he can't do that on his own boxes. If you dwell on the fact that in the eyes of the DLA not much has changed it's pretty depressing reading. But then they don't have boxes for the fact that his vision has improved, his hearing has improved, he smiles and laughs with us, he likes to stand up in his standing frame, he can tell us that he wants us to carry on playing the same game. The form is just interested in the basics, movement, care, illness. Still if it means he can get some financial support that will help towards equipment or therapy then I can fill the form in without sliding into mild depression.


One last thing, Zack has become a right stroppy bum over the past couple of weeks. We can't work out whether its his teeth, his tummy, or if he just wants to be constantly entertained. One things for sure this boy can cry like no other baby. It's almost as though we have been spoilt with a child that's been perfect for a year and half and now he's decided to show us how temperamental children can be. In some ways it's good, it's good that he knows what he wants, it's good that he is becoming so self aware and a little bit frustrated. It's not so good for my ears or my back (he likes to be carried round the house, it's the only thing that will shut him up).


Oh and finally, finally. Zack went to his first wedding at the weekend. He just went to the church bit, where he then fell asleep throughout the service, woke up at the end and then decided to cry all the way to his nan and grandad's house. Still he looked nice. 

I decided not to take him to the whole day that would have just annoyed him even more. There were a lot of young families there and they had their children sat at the table, Zack could have come too if we wanted but it's just a bit tough on your own. Daddy was best man you see. Sometimes I wish it was easier to take him to places on my own and that he could experience things as other children do but what's the use in thinking that it doesn't change the situation. I still have the coolest son ever.........no one can top his hair or his eyelashes or the fact that he always smiles at me in the morning. But most of all I love him just the way he is plus I got to enjoy a lovely meal  without him sat on my knee. 


Here's a pic of him with his daddy.

And one of him working his Amish look...

Until next time so long readers.

18 weeks old and already trying to sign on

The weather was rubbish outside so I spent the afternoon being very industrious on behalf of Zack. I sat down and actually filled in his Disability Living Allowance form.

This epic War and Peace form took ages to complete. Parts of it I couldn't complete as they asked stupid questions such as can the child dress himself? Do they need to be observed whilst outside? Do they need help with washing? Duh!!! Of course he does, he's only 18 weeks old.

There was also a nice big space to fill in additional information about Zack's disabilities. I did so. With an extra two pages for them to read. Ha! I'll show them and their big forms.

It's all completed now. So we will see what happens. I don't know, 18 weeks old and already trying to sign on, he better not get used to this!!

Zack has spent much of the afternoon with his dad. Which is great for me as I can get lots done. As I write this Dan has taken him to Tesco's....aaaah his first Daddy and son trip on his own. I did the usual make sure he's got a blanket and a bib and don't forget his mittens.  It's quiet in the house without them.

Lately we have noticed Zack having a couple of spasms here and there. We don't know if they are seizures but we are aware that epilepsy is something that could develop due to his brain injury. 

They usually take place when Zack is worked up. One in particular is when he is very stressed and jackknifes forward, throwing his arms toward his legs and his legs off the floor toward his arms. This last for 5 seconds at the most and then he is calm. The other one we have seen is he will suddenly go stiff and straight, purse his lips and bend his hands inwards, his eyes go quite wide too. Again this lasts all of 3 seconds then he is very calm and alert. They only happen once at one time, they don't come along in bursts of three or four. We are keeping an eye on it and if it gets worse will contact the hospital. We have an appointment with his consultant in August so we will mention them to him then  and get his opinion. I know epilepsy could be something we have to deal with but I really don't want Zack to be put on medication. He is doing so well health wise, no medicine, just his therapies. I just want to try and keep it that way.