My house continues to be a special contamination zone as Annadelle and Chris fight off what is apparently human metapneumovirus (hMPV). Dr. Lovlie called tonight to let us know Annadelle’s nasal swab results had come back and revealed she had hMPV. Basically, she has a bad cold.
BUT, because her immune system is so WHACKED from AFM, it is making it difficult for her to fight it off. I’m attempting to help her by doing chest percussion and encouraging her to drink plenty of fluids including water and orange juice.
Although she has been sick, Annadelle has been in great spirits. She has been playing with her toys and asking me to move her from the couch to her chair, then to her mat, then to another chair, then to her room, then to the bathroom…it is never ending. I think that is really the hardest part of being a mom of a child with AFM is that they are always wanting to move around and do the things they once did, only they can’t. I am praying for the day when Annadelle can walk.
Today she asked to walk from the kitchen table to the door to our home in order to let Ruby and Roxie outside. I held her as she walked and noticed her moving her legs in a stepping motion is getting much better. The problem is that she can’t bear weight easily so she can’t stand up on her own. I think if there was some way we could rig up a pulley system around the house and put her in a harness, she could move herself around. It’s the weight bearing part she has a problem with. I hope that gets better when we get a stander.
I have the prescription for the stander but have to get with Jeff at Coastal Medical about getting it. I texted him today about getting Annadelle’s new wheelchair and he wrote me back and told me he would get with me the first of the week. I honestly don’t ever know what day it is so I had forgotten today was Saturday. I also completely forgot about Valentine’s Day, so there’s that.
Annadelle felt good enough this afternoon for us to do a little bit of e-stim on her arms. I took the booklet given to us by KKI that shows us where to apply the electrodes and just picked a random exercise to do. She tolerated it well, as she normally does, at about 25%. We are attempting to slowly work our way up on the percentage, but I didn’t want to try that today with her being sick.
Once she gets well, the plan is to continue outpatient therapy at USA Children’s and Women’s. I don’t like having to drive an hour for therapy, then an hour back, but I haven’t been able to find anyone locally that is willing to take on her case since she can’t transfer herself yet or walk.
Please continue to pray hard for our baby girl whose journey is only beginning. If you could pray specifically that she is able to walk and overcome this bad cold, I would appreciate it.