Sheena had another 'very good' report card from her Neurologist. He reviewed her MRI and last EEG, and both were looking very good. The MRI had no focal abnormalities which is what they were particularly interested in, given her Infantile Spasms. He gave us the OK to reduce her Epilim by 1ml in the morning, so she'll now be on 3ml in the morning and 4ml at night. He wants her to stay on Epilim for at least 6 months, possibly 12 months. As the brain matures epilepsy can come and go, so if she is on anti-convulsants, it might hold off seizures that may start over the next little while.
In discussing outcomes he said something that I have said to other people when they've asked me about Sheena's level of DS in the early days. He said that we presented him with a baby without DS and IS, he would have no way of knowing if their IQ would be 70 or 135. Similarly for Sheena, it is just unknown. However, he was a lot more positive given Sheena's recent turn-around. I asked if she could catch-up to her peers and he said, "Yes, absolutely".
We ran into one of the Dr's that was seeing Sheena while she was in hospital a while ago, before she went on the Pred treatment. He said, "Wow, you sure can see the Pred." We don't see her as massively bloated anymore, but it is good in a way that others do, as it means that she still has more deflating to do.
4 comments:
Way to go Sheena, that is great news. Sounds like you have a good doctor too. She is beautiful.
For a long while I used to think of Hannah's cognitive potential (?) as the big UNSPOKEN question - no one would go there!! Everyone (ie experts) were quick to comment on how well her heart or her gross motor were but a wall of silence on her intellectual ability - for obvious reasons - and yes funny enough we ddin't feel the same conspiracy regarding Kit even though goodness knows (or cares really) about what level of genius he might attain.
PS - I think there is quite a bit of similarity in our blogs - and not just cultural - I had a laugh at your last response - I just bought my husband the new Tom Waits and was commenting on the couple of Ramones ditties he covers - I love the Ramones!
PPS - Sheena is looking fabulous as usual. I too am always glad when those immunisations are over and done with.
I love this post, and the doc who admitted that there is no way of predicting our childrens' futures. Every child deserves people in their lives that hope and expect for the best for them...every child!
Say, do you mind if I link to your site from mine, Pinwheels?
Thanks for the post. It reminds me of the importance of believing in our kids.
I'm so happy to hear she received such a good report from the neuro!
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