We have had quite a busy day today apart from OT and PT, although she did work hard in therapy.
PT today went way better than yesterday. She didn’t have an absolute mental breakdown so that in itself was a win. One of the most memorable parts of PT was her walking in the gait trainer. She isn’t walking as normal but she is at least attempting to move her legs as she should. She is still not able to pick up her left foot and isn’t pulling up her right leg much at all. She did a much better job locking her legs to stand today which is very helpful when we try to transfer her. I think it is a step in the right direction, no pun intended.
We had a conversation with our Blue Cross case worker about when we had asked Dr. Davis about staying at the Ronald McDonald house and still being able to do an intensive inpatient rehab. She suggested we call the number on the back of our card about outpatient benefits so I did. I discovered that our policy covers inpatient and intensive outpatient rehab exactly the same. It requires a precertification after 14 days, so essentially as long as the doctor reports that she needs intensive therapy, there is no cap on how much can be approved by BCBS. We are trying our hardest to make sure we can get as much intensive therapy approved for her as possible. Based on what we have found out from other parents who have children with AFM, intensive therapy IS the treatment.
If our doctors decide to transfer us to intensive outpatient therapy, we are still going to have to wait on a room from the Ronald McDonald house. When we first got to Children’s we had our social worker submit an application to RMHC for us. She told us they would call us as soon as our background check came back good. That happened Wednesday before last. Last Tuesday I called to check on the application since it had been almost a week and we hadn’t heard anything. I was told that they had my information but still needed information on my husband, my mom, and my mother in law. I explained that only Chris and myself would be staying, so they told me to submit his information and they would let us know when it had been approved. I did just that, but still didn’t hear anything. I called yesterday to check the status again and was told they had Chris’ information but not mine. I was ready to pull my hair out, but I went ahead and submitted mine. I asked about how long the wait for a room would be and was told they had no idea. So we’re just sitting here waiting for a room and wondering about transferring to an outpatient status.
Annadelle was super excited to have a visit from some of our best friends Matthew, Amanda, Michael, Levi, Aiden, and Selah. They drove over from Anniston this afternoon and spent the day with us. Because children under the age of 12 aren’t allowed on the patient floors, we went over to Children’s Harbor and played a few games. We ordered pizza and hung out in the cafeteria, catching up and just enjoying a little sense of normal.
We also ran into our sweet friend Mary Kathryn who has also been diagnosed with AFM. She is 3 years old. Her mom, Leslie, had actually contacted me while we were in the hospital in Mobile after someone had sent her a news article about Annadelle’s diagnosis so we had been communicating for a while. Imagine our surprise when we were transferred to Children’s and are now only a few doors down from each other.
If you would like to follow MK’s story or support her family during their stay, check out her Facebook page for updates. Leslie and her husband have two other children who are not allowed on the floor. I can only imagine what they have been through having to take shifts with MK. I know how hard it has been on us and fortunately we have not had to deal with Annadelle’s siblings not being allowed to visit.
Chris and I have decided that we would like to start a ministry assisting other families dealing with AFM during their hospital stay. I know there is no way I could have handled any of this on my own and am so thankful for contributions made to our GoFundMe account created by our sweet friend Nicole Watson. The contributions have allowed us to pay our bills during our now 61 day hospital stay. We will be using the rest of the money to pay medical bills and provide her with medical equipment not covered by insurance. She will need a lot of at-home therapy equipment for us to do therapy with her when we don’t have a PT or OT appointment scheduled and the costs definitely add up.
It is our intention to fundraise to support other AFM families in need so that both parents can be with their child during the hospital stay. I will share some more information about that in the future we have it all pinned down.
Thank you again for all of the continued support. We ask for many more prayers for our girl to have a full recovery. My specific prayer tonight is that we continue to see improved movement in her left arm and that she be able to stand on her own.