Eight weeks ago today, Chris and I received the news that Bex was experiencing Infantile Spasms. That news was quickly followed up by the news that the best treatment was daily injections to be administered by us for 8 weeks. We were also warned about the laundry list of side effects that ACTH would cause and that there were no guarantees that this treatment would work. I remember the first time I watched one of the nurses give her an injection and thinking there was no way that I could give my baby shots daily. In fact, I almost asked if just taking her into the pediatrician’s office each morning was an option.
Bex received her final ACTH injection yesterday….eight weeks and fifty-three injections later. Ironically, I thought giving the injections would be the hardest part. That was actually the easiest part. Surviving the side effects was by far the most difficult part. There were many days that I would spend all day with her, but at the end of the day, I would look at Chris and say, “I miss Bex…..so much” because you could tell she just didn’t feel well and wasn’t herself at all.
Today, we are thankful for many reasons. We are thankful that the ACTH worked for her and has stopped her spasms for now. We are thankful to have our Bexley back. She is laughing, she is smiling, she is playing, she is "talking" nonstop, and she is exploring her world. After weeks of only seeing little glimmers of her personality, we are soaking up every smile, giggle, and playtime. I have said it before, but it is the best medicine. We have always taken a step-by-step approach to her diagnosis because at times, it is difficult not to get overwhelmed with worry about all the unknowns that lay ahead for us. Eight weeks ago tonight, we said our focus was to get Bex through treatment and stop the spasms. As of right now, we have cleared that first hurdle and for that we are thankful as well.
Next hurdle….the appointment with the neurologist next week to get a better understanding about her prognosis and our next steps for her treatment!
That was a big hurdle. Let's hope the rest are small or nonexistent.
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