Ellie has a rare genetic syndrome called Wolf-Hirschhorn syndrome. This is the result of a genetic error on chromosome 4. It is estimated to occur in 1 in 50,000 births. Ellie also has right eye anophthalmia, which means she was born without her right eye. Ellies life has its ups and downs, but she continually amazes us and makes us smile. This is her story
Being happy doesnt mean that everything is perfect.
It means that you have decided to look beyond the imperfections...
Tuesday, January 19, 2010
Therapy Update - 2 positives
Yesterday we had physio with Ellies new therapist, Trish and she brought our new OT, Laura with her. YAY!!! We finally have a OT through early intervention. This makes it so much easier as through early intervention the physio and OT come to us, and we do therapy in our own home.
As soon as Trish & Laura arrived, Ellie decided whilst lying on her play mat that she would lift her head off the play mat, over and over.... Trish was so excited as she explained this is a sign of Ellie wanting to sit. So she showed us a way to get her up and back down to the floor. Basically when Ellie is lying down, when we go to get her up, instead of picking her straight up, roll her to her side, and she puts her hand out on the mat and pushes up. She explained that this teaches ellie that she can do this, and isnt as uncomfortable feeling as us just putting her in the sitting position (as when we do she screams and throws her head back)
I was so happy to see Ellie doing this, wanting to get up, now we need to work on getting her to want to do it herself.
Another positive was that we brought the high chair out again, and both Trish and Laura showed me how to sit Ellie in it (this is hard because of Ellies small size) but it was a success, she liked it. The only problem is that when we put the tray on the high chair, Ellie can only just see over it and her arms cannot reach the tray, so this prevents any form of self feeding... Which they told me is something we could start working on... Another YAY!!!!
So... Now I am a woman on a mission and need to find a highchair that gives Ellie the support that she needs, and has a tray that she can reach. That cant be that hard can it???
Self feeding really excites me, it makes me feel like Ellie is getting some sort of independance that she should have, and maybe I am getting too excited, too soon, as I know this can take a while with WHS kids... But I am hopeful.... Especially after seeing Norah, who also has WHS, starting to self feed. Way to go Norah!!!
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Mel! This is all so great!
ReplyDeleteI am very excited for Ellie. I wanted to tell you that Norrah still does not use a regular highchair. Instead she uses a booster seat/travel chair strapped to a regular table chair. We found that the booster seats are smaller and also allow her to sit directly up (90 degree angle), prevents slouching which really helps with feeding and using her oral motor skills rather than letting the food fall back to her throat. We have a chair similar to the one under your "View my complete profile" on the right of your blog. And we also have another. One travels with us in the car and the other is permanently attached to a chair at home.
Just thought I would fill you in. And they were both about 30 dollars.