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.
Our sweet girl is in great spirits this morning even after being stuck for another IV. Dr. Maertens decided to do another round of IVIG this morning so we had to poke her again. She handled it like a champ.
The social worker came by and said she is waiting to hear back from KKI. If we can’t get in to KKI inpatient, we will definitely be going to Birmingham for inpatient rehab.
Chris left just a bit ago to go home and drop off a load of toys we had received while being here. He’s also grabbing us some warmer clothes in preparation for our journey. We aren’t sure how long we will be in inpatient- it could be a week, a month, or longer depending on what her PT decides. From all the research we have done, we have learned patients with TM/AFM typically have much better outcomes if they have intense inpatient physical therapy very early on after diagnosis.
Please say a quick prayer for our sweet girl that she continues to improve and have a full recovery. 💜💜💜
Annadelle is showing a reaction to the IVIG given today. Her skin is very splotchy over her face, chest, and legs. The resident told me they sometimes see this type of reaction at the tail end of IVIG administration and we will continue to watch it over the next few hours. She said it typically subsides in 2-4 hours.
Still no word on where we will be going for rehab. KKI has not returned calls from the social worker. They went ahead and sent our chart to Children’s of Birmingham in the event we can’t go to KKI.
Please continue to pray for our baby girl.
Annadelle just wiggled her pinky toe! 🎉🎉🎉