When I sent the email out earlier, I forgot to include an update on Maddy. We're working on coming home. She has to be off her oxygen, first, and that's the main hurdle we need to clear. We're working on weaning her off of that. So put that on your prayer list! The orthopedic doctor should be in tomorrow for an eval, although nothing will be done about her feet right away. Urology has to eval, too, before coming home, I think, and the PT/OT will do a complete eval tomorrow. She also has an eye exam and routine echo tomorrow. So busy day...pray that all goes well with the exams. Oh, and we get to learn the joys of catheterizing, and that should happen soon. So who knows--Friday or Saturday we'll be home, maybe?? We'll see! She's doing well laying on her back and shunt side. They have a little doughnut ring to help protect the kyphosis on her back. We may need to buy a special mattress for her--the same one that the hospital has used for her, called a z-flo. It's awesome and would help alot. Insurance doesn't pay for it, but the cost would be worth it in the long run--if the supplying company will even sell one to us. They don't sell to the public unless it's for a very good reason, and Maddy has one. It's not just for her to have a dreamy mattress (it's like an extra comfortable Temprapedic mattress, and man, I want one for me! Ask anyone who has felt this one, and they'll tell you!), but it's to protect the protuberance from breaking down or from pressure sores. So another thing to pray for--that they'll sell us one!
Ok, that's it, I think! Thanks so much for your continuing prayer and concern...I have no doubt that your prayers have been heard and answered.
If you think about it, I'd really appreciate you adding two moms and their babies to your prayer lists as well. Both I've met because of Maddy's SB. Audrey was born in December with SB, and had been doing very well until earlier this summer when the Arnold Chiari II malformation caused her to stop breathing. She had to have brain surgery to correct the situation and was recovering nicely. Now her shunt has malfunctioned and she's having to go in for another surgery on Friday. Please pray for Audrey and her family. I know it can't be easy to have continued trouble.
Second, please pray for Dana and her little girl Giana Grace, born Monday. You can read about Giana at http://www.caringbridge.org/visit/ourgirl. Scroll down to see the journal entry. Sounds like she has a rough road ahead, some of which is a surprise to the parents.
Dana and Alicia--praying for you an the babies.