Praise the Lord, the school week has had a great start. Lilly re-entered the classroom scene with a little bit of anxiety yesterday, but is right back in the swing of things (including today's "friendship feast" between little kindergarten pilgrims and indians). After a good weekend of swim meets, Anna has been doing well with occasional doses of anti-nausea medication. For both girls, we are looking ahead and more specific steps.
After discussions with Dr. Campbell today, Lilly is scheduled for another surgery to address her infection on 27 December. As the antibiotic has done its work over the past few days, we have noticed a small collection of fluid under one of her scars corresponding to the remaining upper part of her left VEPTR device: a little clue. Dr. C had removed the lower portion of that same device in September, suspicious that the bacteria were there. Now we are pretty certain the remaining bacteria are harbored on that upper portion that is still in place. We are thankful to have seen that little clue a few days ago--we e-mailed a photo of it to Dr. C--and are hopeful this may be, Lord willing, the last surgery to address her infection before we get back on track with regular expansion surgeries.
After discussions with Anna's ENT today, we are increasingly considering the possibility that Anna has Ménière's Disease, an inner ear disorder that affects hearing and balance. We will also undergo some genetic testing that could point to other causes of her hearing loss. The ENT is recommending a low sodium diet to attempt to alleviate the symptoms of dizziness and nausea that she has suffered recently, which could be caused by fluid imbalances in her inner ear. Tomorrow Anna goes back to receive her hearing aid, and is very excited about the prospect of having bilateral hearing again. Stay tuned for photos.
So now I get to design family meals that will a) be high in calories and enable Lilly to gain weight rapidly and b) be low in sodium for Anna's sake. I think we'll start after Thanksgiving!
We have much for which to be thankful.
Wow Amy! There is a lot on your plate. You always handle it in stride. We will continue to pray for the girls! And we are very excited to see you all for Thanksgiving. Hopefully salt can be minimized!!
ReplyDeleteFinally Amy you are getting some answers to both girls. Now maybe things will calm down for you all....umm i doubt it..LOL..wishing you all a wonderful Holiday with your perfect family...:)
ReplyDeleteMy mom in law has Meniere's Disease. She manages it quite well with a low sodium diet. It's harder for a kid to keep track and be mindful of what she eats throughout the day. Mainly if mom mom in law sticks to pretty basic home-made food she does fine. It's the processes stuff like canned soup that can give her trouble.
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