November 30, 2018 A Rough Day

When it comes to a lengthy recovery from a serious illness, I know it is important to remember that some days will be easier than others. Like a graph of success over time, the line is jagged, weaving way up and way down, until eventually it settles high on the chart. The key is to push through the down days, right?

We are all soooo over being in the hospital. We haven’t slept on an actual mattress, made our own breakfast, or relaxed in our own home in 61 days. The physical and mental exhaustion is reaching a breaking point.

I know Annadelle feels the same way. There are times when she breaks down and won’t stop crying during therapy, realizing just how far she has to go before she can do things we took for granted before, like sitting criss cross applesauce or crawling, rolling, or bending over.

I cry every time I think about how she won’t be able to run to the Christmas tree to see what Santa brought. She can’t reach to the top of the tree to help us place the angel on top or explore the house on her own to find out what mischief Annie the Elf got into the night before.

The scariest part is not knowing what our final outcome will be. Many, many, many patients with AFM never reach a full recovery. I have recently become part of a Facebook group for parents whose children are battling AFM, but instead of helping me to feel better, it makes me sad to see how many children haven’t recovered.

I am trying my hardest to keep faith in God that He will allow Annadelle to walk again. She did not do well in PT today, crying most of the time and tiring out easily. We tried to get her to walk in the gait trainer but she wasn’t having it. It is a struggle for her to pick up both of her legs, but it is definitely harder for her to pick up her right one. I almost wonder if she is not lifting it at all. Hopefully PT will go much better tomorrow.

As far as OT goes, she has done relatively well. Miss Holly makes her a list for her to complete each day and she puts a sticker next to each activity she does. I’ve been keeping the lists as a way to remember what all she has done in order to prepare myself to do it with her at home. Her lists for the past few days include: Getting dressed, playing a game while on knees, pull to sit, arm skate, and “tickle stickers”. Tickle stickers are the electronic stimulation therapy. She is not responding very well to it because she has not been able to tolerate a high number, but we are hoping that improves with time. Yesterday Holly was only able to get to a setting of 12 and today she was able to get to 17. I have heard from other parents whose children are battling AFM that e-stim therapy helped their child so we are hoping Annadelle will grow to tolerate it.

Please continue to pray for us. We need it.

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