Just wanted to send a quick update before our appointment with Dr. Shields at UCLA this coming Monday. I received word this morning that our UCLA visit has been approved by insurance! YAY! Also, Jenelle's prescription for her "AFOs" (leg & ankle braces) was also approved and we will be going in for measurements on Thursday. Keep your fingers crossed that Dr. Shields will agree to put Jenelle on the Ketogenic Diet. This is something we have not tried, but I think in light of her many medications, something we should consider. Jenelle has been doing very well this past week. As she gets better from that virus she had, we've really noticed that her seizures have decreased as well. She has been "teething" of late but this has not affected her seizures much.
On a side note, for those of you who watch the show "Judging Amy" on CBS (Tuesdays at 10:00 p.m.), there will be an interesting show this evening where "Judge Amy" hears a case about a teenage girl arguing with her parents over risky brain surgery to stop her Epilepsy. I personally do not watch this show, but will be interested to see how they portray the circumstances involving such a decision. I know when Brett and I were faced with making a similar decision for Jenelle, it was a difficult one. At times when we were discussing the possibility, I know I was almost physically ill thinking about it. It will be nice to see them bring Epilepsy into the spotlight (and hopefully in a "good" spotlight.)
And finally (speaking of brain surgery) we'd like to ask for some extra prayers and positive thoughts for Jenelle's friend Lily in Arizona. Lily is 2 months older than Jenelle and had brain surgery yesterday (January 31) to hopefully put a stop to her violent grand mals. Lily has at least two violent grand mals a day lasting almost 10 minutes each, and usually cries inconsolably for a half an hour after. You may have heard me mention Lily before because she and Jenelle have been so similar and they sometimes look like sisters in photos! Her parents are so nice and so strong. Often we support each other as we try to find something to help our girls. Lily's surgery went well, but she had a fever after and has meningitis resulting from the surgery. Please keep her and her family in your prayers that her recovery will go smoothly.
If you would like to read more about Lily, here is her website.
Thanks again and I'll update after our visit to UCLA next week!