We had each other, and then we had Lily, and now we have everything. Lilliana has tuberous sclerosis. This is our journey and our fight of this disease. And more importantly, our determination to live well and fully in spite of it!
Sunday, May 23, 2010
Monday, May 10, 2010
Lily Hears a Who
On Wednesday Lily had ear tubes put in due to fluid issues. We could tell almost immediately that she could hear better! We had fun the whole day playing with toys and showing her sounds that she hadn't heard as clearly! They told us that she would do quite a bit of crying, but she didn't. Lily was, as usual, happy as a little clam! She may struggle with crawling, walking, and eating, but she has conquered the task of finding happiness and that is an incredible feat!
Brain Surgery Eligibility Coming Up
The new medication that Lily's doctor prescribed has lowered Lily's seizures to 3 - 4 a day, but has not eliminated them all together. So, in the next few weeks, Lily will be evaluated to see if she's eligible for brain surgery. We are very scared. Most days I try not to think about it; however, at the same time, I want her seizure-free, and this may be her only hope. Also, the financial burden is starting to weigh on us. We have no money left in savings. Lily's medications alone are more than $3000 a month; thank goodness we are getting some help with that expense! The last thing I want to worry about is money, but the bills keep coming no matter what you're going through.
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