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!
Wednesday, December 2, 2009
Cook Children's Hospital in Fort Worth
We have an appointment at Cook Children's Hospital to help us diagnose and treat Lily's seizures. We're very hopeful that with some of their advanced equipment and specialized doctors that they will be able to give us more answers and insight into her medical condition. Thankfully Lily's new medicine, depokene, has been working wonders! She is not seizure free; however, the long spasms have stopped. Now we maybe have one very, very light spasm a day. She still has the small eye seizures, but we are hoping that as this medicine increases that we'll get more control of the smaller seizures. Life is so much better for Lily when the seizures are at bay. She's alert, laughing, and playing...like a healthy baby!! We are overjoyed and hopeful that someday we can call her seizure-free!
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