Saturday 20 March 2010

I just cannot be arsed with ticking off more boxes for him.

Reflux has been our main concern this week. Zack is still managing to deliver some of his food back to his mouth and it is driving us all crazy. 


It is usually worse during the car journeys. Not sure if the reflux is making him annoyed or he is getting so annoyed it's causing him to reflux. Either way it ain't pleasant. I have heard that some children are so bad that their clothes are changed about twenty times a day. Zack only refluxes a small amount of food after each feed which I guess isn't so bad but you can tell it is getting on his nerves and I am sick of having a permanent tissue shoved in my back pocket. 


I managed to get hold of the Dr. and we discussed (in the waiting room as you do) Zack having some medicine. She mentioned something that helps to empty the stomach a bit quicker. The idea being that some children have a slow digestive system, so the quicker that empties the less likely it is to come back out the other way. Now I am a bit wary to type this but for the past three days Zack has been quite good. Today hardly any reflux and good in his car seat. Not sure if the threat of medication has made him behave or the fact that we are giving him three feeds a day has eased his digestive system. Hoping tomorrow will be a good day too as I am already thinking we may have cracked it.




Today we went along to a local charity group called Families United. They are a lovely group of people and most of them have a child or children with disabilities. The charity holds a fun club for children every other Saturday, go on outings together and have parent get-togethers. It was nice to talk to other people in a similar boat, where everything just feels normal. 


Zack decided he would just monitor the situation. I got a child stuck to my face. Yes a gorgeous little boy ran up, threw his arms round me and stuck his lips to my face. He wasn't for moving. He did eventually but I enjoyed the cuddle. Zack remained unimpressed.


It was also good to hear positive stories about children with special needs and see how much fun they all have. I have added a link to the side of the blog as I think they are a brilliant, worthwhile group.


Zack had his physio this week. Same old same old except with me asking lots of questions about standing frames and lycra suits (a later post I think). The physio mentioned the development journal for children with visual impairments. It is a huge folder with all the milestones broken down into really tiny steps. We already have one I told her and mentioned that it was useful out of politeness. Truth is I hardly look at the bloody thing. Zack is measured and queried so often I just cannot be arsed with ticking off more boxes for him. In fact I almost feel like it's given to parents of children with special needs to make them feel better about the tiny things their children can do. I can be proud of my son without ticking a box so I'd rather not use it. And whilst I am on this rant, if I have any more children I have no interest in red books, milestones or any other flippin' government checklist. What will be, will be. The end. 


Okay rant over. 


Zack also met with the audiologist consultant. I told her how I didn't think there was any difference in his hearing with or without his hearing aids in. She stood behind him and called his name and clapped her hands. He half smiled at me. Even though he didn't turn his head round I knew he could hear her but if you could see the look on his face. I know he was thinking stupid lady, I know you are shouting me but there is no way I can be bothered turning round to look at you, I don't do tricks you know. 


She also tested his fluid in his middle ear. Yep. Still has that, which isn't helping his hearing. If that disappeared it could make a dramatic improvement to his hearing. It can clear up of it's own accord or he could have grommets fitted. As I don't want him to have any operations until he is bigger I am happy to carry on with the hearing aids. The consultant said he was probably hearing more with them in. I did ask why he can now hear more than before, she made some comment about it's probably because he is getting older that things are working a bit better. But that makes no sense to me because I don't think hearing stuff has anything to do with being older. Yet again I'll do what I think is right for him but to be honest I sometimes think all this consultant lark is just guess work.


On a very sad note, Mary, my other beloved baby has gone. Yes, my little Mazda has left the building. For a whole year I managed to keep my claws into her avoiding Dan's threat of "we really need to sell the car you know.' But now we do need a proper car, that can fit a big boy car seat in and after all, as much as I loved Mary she doesn't come close to Zack. Who knows one day she could come back.

5 comments:

Anonymous said...

You know the comment about him getting bigger and things working better. Well I had a thought that
it might be that as he makes more sense of the world around him then maybe he makes more sense of the sounds he hears. Not making myself clear am I.....try again. Is he learning to make sense out of what he sees and hears, familiar sights and sounds are making better sense to him. Just a thought.

Anonymous said...
This comment has been removed by a blog administrator.
n said...

Hi
Yes it possible could be that things are beginning to make sense. Either that or the fluctuation in changes to his fluid in the middle ear means he can hear things better some days than others.
Thanks for your thoughts though.
x

Ruth Ellen Drake said...

Hey Linzi totally agree with your 'rant' and will check out the Families United link keep up the good work- love reading your blog xxx

saranne said...

Yep, also agree with your rant about measurement and tick lists! The whole world is obsessed with whether little ones are doing 'the things they should'. It's just another way to make parents paranoid! Haven't read the blog for a while Linzi, great to hear about Zack's adventures! x

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