Yesterday was good. And yesterday was bad.
In the morning while Ava was at preschool, Henry and I took Ella to get casts made of her legs so she can get Ankle Foot Orthoses (AFOs). Ella had a great time! She really liked Mr. Scott, who did the casts. We got to pick a fun pattern for the plastic, as well as colors for the velcro straps and foam pads inside the AFOs. She also had her legs measured for her knee immobilizers.
It was a very positive experience. In his many years of working in the field, Scott has fitted children with SMA for orthotics before, but only about a half-dozen. He was eager for me to tell him more about the disease. I explained to him pretty much all I've learned in this short time, which was quite a lot. I described Ella's symptoms, tests she's had done, the progression of the disease, etc. He asked some questions as I explained, to be sure he understood as much as he could. It was obvious to me that he has a lot of compassion for his patients.
We talked about how often Ella will wear the AFOs and how they'll help her while she practices standing and weight bearing. We discussed how important they are to make sure her bones are in the right position as she grows.
When we got home, there was a brief moment when I was looking out the window to the backyard, thinking, "This is going to be okay." I even had butterflies in my stomach with a little excitement. I felt encouraged that we're finally doing something to really help Ella.
I then decided to bring her to the coffee table to see if she could bear any weight on her legs as I held her. It was a little awkward, but she did bear a little weight (I was holding her pretty tight):
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| Ella at 14 months |
Below is a picture of Ella standing on her own when she was only 8 months old:
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| Ella at 8 months |
It was then, thinking of Ella standing on her own so many months ago, that my excitement of the day began to fade.
The disease is progressing. She's only 14 months old and she's already noticeably worse. I know we don't have any idea about how quickly Ella's SMA will progress, but any loss in function terrifies me, and this seems to be a pretty major difference (from 8 months to now).
Fast forward to the evening last night, when everyone else in the house was asleep. I was reading a magazine about SMA (sent to us from Families of SMA) and there were some really good articles in there about research being done and how they're getting closer to a treatment or cure. Reading the articles started to raise my spirits again. As I was nearing the end of the magazine, and gladly accepting the tiredness finally setting in, I got to the section entitled, "Loving Memories". I knew I shouldn't read that section, especially by myself right before bed. But I couldn't take my eyes away from all of the beautiful babies and children pictured on those many, many pages. Most of the parents/families of the children wrote letters to their angels to accompany their pictures. All of those children had lost their battle with SMA in the past year.
I wondered if Ella's picture would one day be in that section, with our letter to her.
That was it. I lost it.
I keep thinking that things have to get easier. But I think the reality is starting to sink in. This isn't something that's going to get better. It's going to get worse. It's going to get worse until the unthinkable happens.
Please God, help the researchers find a cure in time for our Ella.
