Sunday, December 4, 2011

Lucy's excellent adventure

So here we three sit in a pretty bleak Day's Inn in Danville in preparation for Lucy's MRI tomorrow. I called this post "Lucy's Excellent Adventure" because she has so far behaved as though we are on some wonderful trip and every new thing we've done has been so much fun to her. As she sat and played on the hotel bed this afternoon she laughed and smiled and tossed herself around like she was at an amusement park or something! Supper out at the local Friendly's restaurant was equally thrilling to her as I let her have french fries, chicken fingers, and even a little strawberry sundae afterward. Then her nightly bath topped it all off. Besides the fact that she slips too much when there isn't something soft and grippy under her bum, the bottom of the tub did not come close to meeting my cleanliness standards for where I will put her bare tooshy, so she got to shower with momma! As soon as Chad handed her toward me she was smiling and laughing even more! She was heavy and slippery and the whole affair was pretty precarious, but so much fun because she had such a good time and just giggled and was silly the whole time. Plus she is now sound asleep beside me in the bed and gets to sleep with me all night!
And in the mean time if I am not careful I instantly think of what we have to do tomorrow and the risk involved with the sedation and I literally could puke. I look at her and just want to punch somebody in the face. Which is silly because I have never punched anyone in their face and I am not violent in any way, but I get so angry that I feel like attacking someone. I said to Chad on the way here that I go along making appointments, doing the therapy sessions and therapy on my own, preparing for these trips and procedures, etc., but then every once in awhile it kind of hits me and I'm just like, "WHAT!" "HOW CAN THIS BE?!" Our sweet precious baby has something "wrong" with her, and as we have found out in the past couple of weeks, it's quite possibly more serious than "simple" hypotonia. I have said since we first started seeing the delays that all I have read says hypotonia is a most often a symptom of an underlying cause so I guess I have always known that there was going to be more to come than just the therapies. A mom knows when something is not how it should be with her baby and I knew, but it still hits me hard pretty much on a daily basis and now I have to let strangers give her something to put her to sleep and trust that they are going to do it absolutely right and she will be safe. I can barely stomach the thought of having to leave her with strangers period, let alone strangers that are sedating her and the going to scan her brain.
Luckily the hospital was able to schedule her extended EEG for Thursday of this week. I was a little overwhelmed at first, but then totally floored when I asked the lady on the phone how long they usually take and she said 3-5 DAYS! The doctor who told me they wanted to do this tests did not tell me that extended meant by days...I just assumed it meant a few hours. So now we will be home for a few days and then will go back and stay in the hospital with Lucy attached to the EEG machine for however many days it takes for them to get the information that is needed to decide if she is having seizures. So it is going to be a super long week for the Shaffer family, but I am so glad that we did not have to wait to get all of these tests done and that we will hopefully have some answers by the end of the week or weekend. It's answers that I want, but it's also what those answers might be that scare me to death. But, I guess we will just have to see what happens...regardless, Chad and I will handle it and do what's best for Lu.

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