[ Post a Response | ECHO Dialogue ]
Posted by Amanda Prentice
on April 25, 2009, 7:35:18, in reply to "Re: 22q deletion"
78.151.149.162
Hi Pippa,
Yes I will keep you posted on Lucy's progress. It was so good to meet someone like Dr Gordon. She was just so amazing. She even commented on my concerns with Lucy's bowel movements. Sorry to be "to the point" on a subject such as this, but she has said that the frequency of Lucy's bowel movements are nothing to be worried about, as the consistency is normal and there is occassional visible food in the stools. (Sorry!!) She thinks that the frequency is probably due to the amount that she drinks.
It sounds like Leo is coming on in leaps and bounds!! I understand what you mean about not wanting to evaluate him. Other people will do that, and even in my case with Lucy, there has to be a fine line between understanding their differences, but still treating them "normally". At the CDC, Dr Gordon asked who had introduced the Makaton and why. I told her that I had introduced it as a way for Lucy to communicate but also because I didn't like the "point and eeerrrr". She laughed a little and I said "well, I didn't stand for it with Katie and I won't stand for it with Lucy", I then regretted saying that immediately, but she totally understood what I meant-thank god!! I know that Lucy struggles and but making her lazy is not going to encourage her is it??!
Speaking of Makaton, how are you learning it so far, or do you already know it? I've had a look around for books/DVDs etc and can't find anything instructional for me or the girls. I looked on the website and the nearest course to me is in Essex (I live in Suffolk). So far we are relying heavily on the internet and the wonderful saint Justin Fletcher lol Katie already knows a bit and shock of all shocks, my dad has quite an extensive Makaton vocabulary (he never ceases to amaze me!!) What also shocks me is the lack of some people wanting to learn. How can I put this..??.... I'm surprised Lucy's other grandparents haven't shown more of an interest in trying to communicate with her. That is probably a really unfair statement, but if she was hearing impaired I'm sure they'd try to learn sign language. Lucy is speech impaired, so in my eyes it's no different.
Good luck for the bowel appointment!! Let me know how you get on. I guess the plan is to fix the bowels before the heart?
Big ((HUGS)) for Leo. x
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