medical update-

So today was very informative! We learned so much about the upcoming surgery - big details and even very tiny details. There is still so much more we have to learn and we have yet to make the decision on the type of CC they will do but we feel much better after digesting the info from today. We learned that the surgery will take approx 4 hours and Camilla will be in the hospital about a week. Many of the details were not pleasant including the fact that she will spend her first night post-op in PICU (Pediatric Intensive Care Unit) and we will not be able to be with her. Brandon and I will be able to see her some after surgery but it hurts my heart that we won't be able to spend that first night with her. They assured me that she would be very 'out of it' for the first two days anyway so she wouldn't know but they don't know that anesthisia doesn't keep Camilla 'out of it' - she's either awake or asleep - she has never had that anesthisia 'fog' that most everyone deals with - but I have every confidence that they know what they are doing - I'm just being her Mommy and worrying :) I also came home with the names and numbers of several other families who have been through this so in the next week my mission is to contact these families and learn their stories. We also left the office today with ANOTHER new med, Lamictal, yeah I know , it's the one they gave us at nine months and said "hey if you see a rash it could be fatal so give us a call." Well after two days she had a rash (I'm pretty sure now that it was just diaper rash) but I gave them a call and we never saw that drug again - until now. And now I know MUCH more about this drug and since we are still despartely trying to go into surgery wiht the best amount of seizure control possible we will start it tomorrow. Continuing to wean off of the Banzel.

Our appointment with Dr. Blount, the neurosurgeon, is April 25th and we will set the surgury date at that appointment. It is then that we will have to decide between complete or anterior two-thirds. Dr. Kim assured me that the surgery would be in May and in fact could be as little as a week following the April appointment. This process is going much faster than we expected, we began in December and here we are looking at surgery in May - this is so rare and only confirms that this is God's Will for Camilla.


Camilla with Ally (L) and Dr. Kim (R)
of note: Camilla actually had a seizure while Dr. Kim was in the room with her today - it was a mild seizure and her reaction was the same but very good for Dr. Kim to experience it first-hand - she noticed so many things in those brief seconds

specific prayer requests:
new med to work and only good side effects
sleep to improve with the wean of Banzel
successful surgery = no seizures, improved development
first night after surgery
shaving a portion of her head (Mommy's being vain I know)

"For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future." Jeremiah 29:11