Today Ellie had a busy day, first we had a appointment at the neurologist, who was VERY happy with how Ellie appeared - Happy, talking, alert etc, this was something she wasnt on the previous medication. So fingers crossed this med is a keeper. We will see the neurologist again in 6 weeks to see how she is going again.
We also had physio and speech therapy at home today. Ellie is definately getting stronger in her sitting in the bumbo, she even plays with a rattle whilst in it. We also ordered Ellie some leg and arm splints to help her with her weight bearing exercises.
With the speech therapist, we discussed trying Ellie on a few normal bottles and teats, as I would eventually like her to feed on this rather than the medela special needs feeder, so Deidre is going to get back to me about which teats are soft rather than hard, as this will be easier for Ellie to suck from.
The most exciting part of our day was our appointment with the occularist, (this is the man that makes glass eyes) today just by looking at Ellies eye, he painted what will be her new right eye. This was so interesting to watch, and the fact that he does it all by hand, and makes it look so real... it was amazing!! At this stage Ellie still has just a clear glass eye in, with a patch over it, till she gets used to it.
Next Tuesday we go back again to see him, and I think this is when we get her new eye.
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...
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I love Ellie's bling!! She looks so good in the bumbo. So excited to see her eye! It's amazing what the medical profession has come up with.
ReplyDeleteEllie is looking fabulous! She is looking very strong. Yay! It would have been amazing watching the eye being painted. Can't wait to see it! I am so glad that the new meds are working well and you have your Ellie back again xxxx
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