The following text has been copied from a Facebook post on my personal profile that has now been set to private. It is part of a series of posts providing details about the first part of my daughter’s fight with Transverse Myelitis.
It looks like we may finally be ending our journey here at USA Children’s and Women’s Hospital in Mobile. Annadelle was taken off the methadone and her duo tube was removed. Yippee!
Now we are waiting to hear where we will be going for rehab. We had spoken to our doctors about the possibility of going to Baltimore to the Kennedy Krieger Institute, a world-renowned pediatric spinal cord injury rehab facility right across the street from Johns Hopkins Hospital. KKI is known for their intensive rehab program specifically regarding neurological disorders including TM and AFM. Many other parents we have spoken with whose children have battled TM have highly recommended KKI to us.
We were told that because of our insurance, it is likely that BCBS of Alabama will only approve for in-state rehab unless a facility in Alabama cannot give us the same care as KKI could. Our social worker is checking to finalize all the details to see where we will likely go on Thursday. Basically, we know we will be headed to inpatient rehab but we are not sure if it will be in Baltimore or Birmingham. We should know more by tomorrow, hopefully.
Our neuro came in today and saw Annadelle up “walking” in the gait trainer I had asked PT for. He was thrilled at her progress and believes she will make a good recovery. We asked him specifically about what he thought of the CDC’s “diagnosis” of AFM, to which he basically told us he did not agree with the diagnosis. He said if this was AFM we are dealing with, he does not think she would be progressing as she has.
We have told our doctors all along that she will recover, not just because of the slow progress she is making but because of the promises from God that what we ask for in prayer we will receive! The gospel of Mark 11:24 says “Whatever you ask for in prayer, believe that you have received it, and it will be yours.” We are believing and trusting in a full recovery that simply can’t be explained by medical science. Period!
We still have a long road to go and will now be battling our insurance for needed items and care. We are so ready to go home! Please continue to pray for us as we determine how we will get to rehab and where we will go from there.