Neurology Visit ~ EEG Test

Having an EEG test performed looks a little scary, but really doesn't afftect the patient very much, barring the sticky goop that ends up all over your head. It also looks really quite funny! Amelia had all these probes all over her head and then they wrapped her up in gauze. In hindsight, I should have taken a picture! She looked like a lab monkey!

I watched the lines on the test and my grandmother held Amelia. I don't know what I was looking for, as I have no idea how to read an EEG test. I guess maybe I was expecting the computer to immediately self diagnose my daughter's squiggly lines and print out signals on the screen such as "QUICK! Get the Doctor!" or "Real bad case of nfieroa hioewhaiophioa;bn tuei" (that's some latin word for a disease that has yet to become mainstream because only a few people have it, including my daughter) or rather "Everything is normal. Send patient home reassured." But back to reality - none of those messages appeared on the screen.

The test was over in about 25 minutes and now we have to wait until next week for the results. Although the tech added that if there was cause for concern, the doctor would call before then. Since I have to believe there is a hidden meaning to everything medical people tell you (when usually there isn't) I'm sitting on the fence as to whether that meant "expect a call" or "it's fine so no need to fret for the week".  Uugh!

On a lighter note, the tech was expecting, and asked about Amelia's cloth diapers when I changed her. So we had a short discussion about my cloth diapering experience and how to get her started. I wished her luck with her pregnancy and we went on our way. Barring the reason we were in Tampa to begin with, it was a nice day to spend with my grandmother. We stopped at Westshore Mall in Tampa to eat, shop a little and for Starbucks, of course!

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!