Being cute!!!
Cleo & Rosie
So many people have been asking about our Atlanta trip and things have been so busy I haven't had a chance to update. So sorry everyone had to wait.
Ana had a great appointment and didn't even cry during the blood draw! We are so proud of her!
Ana has a new diagnosis, Cerebral Folate Deficiency. This is good news in that it is treatable! CFD could be the cause of her leg pain and neuropathy. She was started on a low dose of folinic acid and they are increasing as needed until we see a change. Once there is no more leg pain, they will attempt to wean the keppra and see what happens. We are so excited about this. . . to think she could be pain free. . . WOW! During the course of this treatment she has experienced burning in her legs which could be a sign that the nerves are trying to repair themselves! The erythromelalgia (red, warm, painful hands and feet) that she had started having is not happening as often. . . yet another blessing! Please pray this is the answer to these many neurological problems! I am also praying this will help the neuropathy of the bowel and bladder!
We are getting ready for our trip to Pittsburgh on the 30th of this month and praying there will be vacancy at the Ronald McDonald house and God will provide sufficient funds for gas and food. Also on the agenda is the Cincinnati trip on May 24th. . . praying the same prayer for this trip as well. Please pray for these needs with us. . . the power of prayer is amazing! God has always provided for our needs.
I also wanted to let Ana's friends and prayer warriors know that Ana has been chosen to receive a "Love Quilt!" You can visit her special page here. We are very excited about this. . . it is a secret, so don't mention it around Ana! I can't wait to see her face when it comes!
Lastly, I will be scheduling her baptism next week. Once I have the date I will post it. All are invited to this special event!
Painting her AWANA Grand Prix car!
No comments:
Post a Comment