01 Sep Update on our sweet beautiful girls
I am well overdue for an update on our sweet little girls and when I say sweet I mean they both get sweeter everyday. I am so in love with our three girls!!
We started our genetic testing finally! We met with the geneticist and she did a full physical exam on Cali and Ryann and said they both look perfect. She did not see any physical signs for a genetic disorder. Poor little Cali gave about 15 viles of blood to submit for known genetic diseases. We will start down one avenue and if all negative we will change directions down another. There are so many genetic diseases and details that I can’t explain much. The doctor had to give Rick and I a high school level briefing and please don’t ask me to repeat it. Science was never my best subject. 🙂 Cali will be the one we test and then if we get a positive they will test the rest of us. Now all we can do is wait and in 2 months we will see what the results are and determine our next step.
More news: Cali has been having terrible foot pain. She has worn braces on her feet and legs all her life but her feet are so bad that the braces aren’t working for her. She has very flat feet and walks on the insides of her feet so her ankles have become deformed and it kills her sometimes to even put any weight on them. We have determined that surgery is our best bet at this point. The process for surgery is extensive. They only do one leg at a time. So she will wear a full leg cast on one leg for two months and then below the knee cast for another two months. Then we wait two months and then do it all over again on her other foot. I cry every time I even think about it because she goes through so much already. It is heart breaking for me to imagine what she will go through for this surgery. I have to remind myself of the big picture and have faith that this will be life changing for her. Her balance is improving but if she cant stand on her painful feet then she will never walk. Please send your thoughts and prayers for sweet Cali and that she will recover quickly and she will walk painlessly.
One last very important topic is the Children’s Rare Disease Network. They are launching a huge campaign for Hope for Sick Kids. Please check out their link. This year Pepsi is giving away millions of dollars to fund good ideas that make the world a better place. They have a good idea that will dramatically help millions of children affected by rare disease, and they can win a grant that will allow them to fund this important effort! Fund Hope For Sick Kids – it’s as easy as a click of a button everyday in the month of Sept. Make A Difference – Vote Today! www.vote4hope.org
That’s all for now. Love your kids and be thankful for everyday you share with them. I know I do and I am….