Well, I feel like things are constantly changing... We are no longer going to Boston as planned for Monday. The Mito specialist has set Ana up to see a Motility Specialist in Houston while we are there. While we are in Houston Ana will also have a 24 hour EEG to check for seizure activity. Lately, she has been having some shaking spells with her eyes rolled in the back of her head at night. We do know we will return to Houston sometime between August and October for follow-up care as well. For now Ana appears stable and the leaking comes and goes. She saw the local neurologist at MUSC last Wednesday and he was concerned about her loss of muscle tone since January. He said her abduct muscles are getting tight and her hips are getting too loose. He is considering botox injections to loosen her abduct muscles, but is worried about her mobility with her hips being so loose and weak. He adjusted her medications in preparation for our trip to Houston, when she will start some new medications to help with pain management. We discussed the possibility of a Mitochondrial Disease Clinic at MUSC. I told him we would be praying for him to consider this. If Houston is the closest Mito Clinic then we will have to consider moving. MUSC has well trained neurologists that are capable of learning about the world of mito and how to treat the disease, we now have to pray that they will take interest in this disease and consider a full clinic. Shey and I know that the Lord will provide a way whether it be a Mito Clinic at MUSC or a move to Houston, we just have to pray about it. We love being close to our friends and family, so for now we will be praying for the neurologists at MUSC and that the Lord send MUSC a mito expert to head up the program. Please join us in this prayer! There is nothing stronger than the power of prayer!!!
I am praying that these changes bring good things for Ana and that the Lord guides the neurologists at MUSC. Your family continues to be in our prayers.ReplyDelete
Love, Julie- MWP