Tuesday, June 30, 2009

EEG #5 Results

Well yesterday we got part of the results for Kylie's EEG #5, and were waiting for some clarification on things today. Matt had spoken to a new nurse at the Neurology Clinic, and she wasn't familiar with Kylie or her case. She read the results to Matt and the best part of it read "essentially normal." I don't think anyone that doesn't have a child with a diagnosis like Kylie's can truly understand how wonderful it is to hear the word normal. There were some other things that were said that Matt didn't quite recall. Of course this had me worried...I wanted to make sure we had the whole picture here and not just the frame of it. So we waited for our pediatrician's office to call us with the end half of the results today...

...Evidentally the other part of the results are still unknown as far as the terminology that was used in the dictation (that's the part that Matt didn't quite remember or fully understand), but the neuorologist that gave the results to our ped's office said that it was a good EEG overall. He told our ped's office (who then told us), that the remainder of the dictation was only noted because of Kylie's history, and would not have been noted on an otherwise healthy, typical infant.

Whew! So that tells us that Kylie's change in appetite is apparently not a result from something going haywire in her little head, which is really good news on many fronts. One factor, one Huge factor has been eliminated, so that is great! Kylie is still back and forth on how much she wants to eat, or if she wants to eat. Every feeding is different. I think yesterday was the first time since she started this hunger strike where she actually held the bottle during her feeding...we had typically been holding it for her while holding her arms down (to keep from pushing it away), so this was a big sign of improvement. Way to go Kylie :)

Definitely the most difficult thing about whatever goes on with Kylie is the fact that we can't exactly dismiss anything as typical baby things, or ever assume that whatever changes she has are of no or minimal concern. Everything is something until proven otherwise. At the same time, every milestone Kylie has is quite the celebration. We get to celebrate things that aren't written in the books for typical milestones. We have so much more to be thankful for, so many more moments to cherish! For that we are eternally grateful...thank you God!


Sophie's Story by Elaine said...

I can't remember...was Kylie ever put on another drug besides ACTH? Just wondering because sometimes between the wean and adding a med, it can cause a temporary hunger strike. But that is great news that she didn't try to push the bottle away!!!

MJStump said...

Hi Elaine,

No Kylie wasn't put on anything else other than the ACTH. Yes, seeing her take the bottle and holding it was definitely great!


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