Amelia's Neurology Appointment

I am in continued awe of parents with chronically ill or special needs children. I honestly don't know how they do it. I don't know how they handle the sleepless nights, or how they pay the medical bills, or how they justify the extra attention that has to be paid to their typically adjusted siblings. How? What? Where is this extra source of energy? Gumption? Is that even a word? But you understand, they just seem to have more of something special. Maybe it is the child itself. Maybe the bond between a parent and a more needy child is more special than the bond of a typically developed/healthy child. If it's all the same to you, I'd rather not find out. I'm sure those parents didn't want to either. They just are.

I'm certainly not saying I'm there yet or will be. I just know I don't want to be one of them. Today was only the first appointment and I know very little more tonight than what I knew this morning. Which is what I expected. After answering a few questions regarding family history and daily living habits, including the sperm donor who has never even laid eyes on her, the physician briefly examined her. She commented on her low muscle tone, how she was such a good baby and offered little explanation into her developmental delays. With that being said, I was quick to point out that since her 6-month well check-up, Amelia has been lifting her head better, reaching out with her hands a little more and can respond to her sister with her own yelps and squeals. These are all signs that she is progressing, just not at a "normal" rate. That had to be good, right? "Yes", she answered. "If it were a neurologically progressive disease, we would be seeing more lethargy, not improvements." This sounded reassuring, but since I really knew this part on my own, it wasn't as reassuring to me as it should have been.

We discussed my concern with her seizure like activity. One type of activity is presented shortly after her bottle feeding, but not usually solids, such as cereal, etc. She will arch her back like she did with the reflux, but also lock her head way back (almost touching her back) and stretch out her arms with clenched fists, her eyes will flutter and roll back and she grunts, almost like in pain. This can go on for 5 to 10 minutes or so after feedings. I'm not convinced it isn't simply related to the reflux, but I'll leave that for the doctors to figure out. Another episode she presents seems to be this staring into space, dead weight body, and then her head will drop. This will present itself for about 15 to 20 seconds and then she "comes to", fine as she was before. Then there are times where she is literally writhing around like a snake, or belly dancer, and it appears completely involuntary (as this can also occur in her sleep).

There are other symptoms we have noticed along the way and I should have taken better notes, because somehow I feel like I didn't convey the gravity of my concern to the doctor. I'm sure I did, but there was no "AHA!" moment in her voice, or even the voice of reassurance, only the listing of the battery of tests that "might" have to be performed. But, says the doctor, let's get the standard EEG done tomorrow, and then we may know more. Great. Another trip to Tampa, another day of missed work. I will do anything that I need to, but having a job with no vacation or sick benefits means if I don't work, I don't get paid. Simple as that. However, we will be back there tomorrow afternoon, with a jacket this time, because for a pediatric doctors office, it was INSANELY cold. Who needs to waste that much electricity anyway? But I digress...

So another night of praying, another round of "what if's" and another night thankful that our Lord God has found favor in me by entrusting me with these two beautiful angels! I will update more when we learn more. Please keep Amelia in your prayers for health, Abigail in your prayers for understanding and me in your prayers for strength and wisdom. Thank you!