Thursday, July 10, 2008
We have enjoyed a wonderful 2 week vacation in Flagstaff with my parents. It is gorgeous up here! Do we have to go back to the desert?
Reese has done well--had a few excellent days of just 2 seizures--but now we are back to about 6. I have no idea why they fluctuate. Nothing changes around her but the seizures change their patterns. Very frustrating and sometimes defeating.
We are visiting with the doctor next week and have a few options in front of us. My first priority is to wean her from the Phenobarbital. It was the first med they gave her when she was only 5 days old. She has been on it ever since, but I am fairly certain it is not doing anything to control Reese's seizures. The hard part is that weaning Phenobarb can be very difficult and sometimes dangerous. I hate that she is on such a strong drug when it is not helping her at all. Please pray for wisdom for Dr. Buchhalter as he guides us through this. Pray that God would give him clarity as to what our next step would be.
While we were in Flag we had a chance to meet with a friend of the family who recently lost her 9 year old daughter to pneumonia. Laura had many neurological problems including cerebral palsy, and after many bouts with pneumonia, she finally went on to live in heaven. I did not know Laura (only in pictures) but the thought of her being made perfect in heaven--running, jumping, singing--makes my throat tighten and makes the tears roll. It was an encouragement to me to learn from her mom--you know, those little things that you don't know about at the beginning, like who are good "special needs" pediatricians, where to go for therapies, where to buy adaptive equipment, etc. It was also encouraging to hear what an amazing impact her daughter had on everyone around her. I love talking to parents of kids with special needs who have positive attitudes. It really is a picture of God's sufficient grace. Sometimes these obstacles seem impossible to handle at the beginning. But God walks us through it, step by step, until it gets a little easier. Then he reveals the light. And that glimmer of light can turn into joy.
When I stare into Reese's eyes and she stares back at me, I am overcome with joy--not only because I cannot imagine loving anything more, but because of what God has done in my heart because of her. Yes, I have been beaten up beyond recognition, but that is a good thing. I know God saw some rough edges that needed to be smoothed and Reese is helping Him accomplish that. For that I am grateful.
Posted by Kerry D. at 9:48 PM