Friday, May 15, 2009

Life is a box of chocolates....NOT!

Sorry for the lack of blogging. I know so many of you are so faithful to read and pray for us. I've just been in funk lately. Uggggh!

Hannah's been sick for two weeks. Last week it was stomach flu stuff and this week it's respiratory stuff. It gets so tiring and I would give anything for just one day where we were not pouring drugs down her throat so she can live through the day. Of course you'd never know she was going through hell because she is just the happiest child alive. Amazing.

We've been doing the testing Dr. Malik ordered and yesterday we spoke with the geneticist. It was discouraing in that the tests she needs to order our insurance will not cover. The only way the insurance will cover them is if she is admitted so we may end up with another observation stay just so we can get the testing done. CRAZY and FRUSTRATING. Anyway, there is a new gene mutation just discovered in girls who present clinical for DRAVET syndrome. The mutation is only found in girls and she feels like it would be a good idea to test Hannah for it. I just want them to find out what is wrong so we have some direction. I'm tired of shooting in the dark where she is concerned.

The 30th of this month is her birthday. She'll turn 8 years old. I'm already praying that she is well because I'd so like to celebrate it. One thing I've learned this year is that I cannot take a day for granted where she is concerned. It is a miracle we have her with us and her life is something to celebrate. So, please pray she stays well.

God has been good to us and I do not want to sound as if I am ungrateful or unthankful for what we have. Hannah's life blesses us everyday. Koolio remains the awesome dog. He's a dog but he's amazing. He keeps us laughing and he watches his girl and is there when she needs him. I can tell you though that even a well trained dog is still a dog. LOL! He's a mess!

Love to all of you! Please keep praying!

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