May 20, 2008

We had such a busy weekend! With both the boys having baseball games both Saturday & Sunday, then church Sunday morning! Kenzie really didn't have such a great weekend. On Sunday she had 21 seizures, which is a lot for her lately. I'm so thankful that Jess stayed with her Sunday while she napped so we could go to the boys games. She slept for 4 hours! She was pooped from Saturday. It may sound crazy letting her sleep like that, but I know her seizures take a lot out of her even if they don't last that long. Yesterday they were down to about 15. Her behavior is better, so I am thankful for that, we are working on her not hitting. What a power struggle that is! She really hates to be told no, but I can't blame her, who likes to be told no!?

Yesterday I called our insurance to find out about our appeal letter we sent and never heard anything back! Found out the letters will not go before the board until July! I am fighting to get her dental procedure covered by our medical insurance and I'm fighting to get them to cover her genetic testing. The insurance wants a letter stating that her meds hurt her teeth and how the course of her treatment would change with the results of the genetic testing. It's just stupid! For those of you who don't know that story: Kenzie had to have 10 junior root canals and 10 crowns put on her teeth. One day at the dentist she had a few "spots" on her teeth, then a few months later she had holes in 2 of her teeth. When they put her under the dentist did xrays and found 10 of her teeth were full of cavities! So on November 1, 2007 she went under for a 2 1/2 hour surgery just on her teeth! The best part no dentist in our insurance plan will see her, so we take her out of network to Children's Hospital, and they don't take our insurance. It's just a mess! The genetic testings is being done to rule out Angelman Syndrome. The test did come back neg (as did all of the others for AS) but her geneticist still says there could be a chance she could have AS. We have an appt with her in June. Hopefully, because of her new seizures, she may have an idea of what road to go down next?! Sometimes, I just wonder if these doctors will ever come up with a diagnosis for Kenzie! I also wonder if we are suppose to get a diagnosis! I guess if things in life were as simple as we think they should be, then maybe we wouldn't have a story to tell. We would miss all those experiences that in turn could help others. It's really hard to keep that perspective. I just keep praying and asking God for strength, patience, and wisdom. Apart from Him, I CAN NOT do this!