La troisième fille

Amelia is resting peacefully tonight after we tweaked the way her medications are given to her throughout the day. She reacts to her antibiotics, and she also gets very agitated with the medications they give her to prevent the reaction. Giving them very, very slowly seems to be the ticket...but it's difficult to talk busy nurses into doing it that way! We have a great nurse tonight, and Amy is doing better because of it.

Amy saw 19 different doctors today, and had 26 visits to her room from nurses. That's a lot of people in and out! Tomorrow I am hoping to keep visitors minimal so that she can rest and recover. She seems to be much less overwhelmed with 1-on-1 attention, and can actually converse and do fun things like paint (although the coordination issues are still a problem). Like many people with brain problems, she is easily overstimulated and has difficult performing optimally when rushed or sensing failure to meet expectations. I am hoping to optimize her recovery by providing lots of calm, quiet opportunities for her to use her fine and gross motor skills in a less chaotic setting. I bought her some fun toys and games today and look forward to getting a chance to do more of that and less cartoon watching tomorrow!

From a medical perspective, she is continuing to be about the same. We did have one piece of excellent news: her white blood cell count and other lab work that indicates her bacterial infection level all improved on the antibiotics. The team of doctors feel she is fighting both a viral and bacterial infection, which makes her care a bit more complex. Amelia is still more alert than yesterday. She has developed worsening nystagmus (eye twitching) that is interfering with her ability to focus or track objects with her eyes. She has also developed a tremor in her arms and hands, head and neck. She is tremoring a bit even in her legs as she is sleeping now. Her neurological exam showed hyperreflexia (increased reflex and twitching activity) and ataxia (lack of coordination) as well as poor hand-eye coordination. So far her intellect and speech are unaffected. As a mother, this detail is so important to me. While I shudder to think of having to help my dear, perfectly formed daughter work through physical and occupational therapy to learn to walk again - a definite possibility as the days pass without progress - it is like water to my soul that God has spared her, those parts that make her most unique, beloved, and beautiful to me. Her humor, her nuances of interaction with others, the way she puts words together...those are the most important parts of Amelia Irene to me. So thank you, Lord, for sparing those through this difficult illness.

Seeing her in pain is heart-wrenching. When her back, neck and head pain make her arch, posture, and scream every time I lift her to take her to the bathroom, it is like a beautiful vase hitting the floor, shattering everywhere. So hard to endure, for everyone in the room. I am grateful she is finally in a hospital and able to rest and receive fluids by the I.V. so that she is not constantly in pain and distress. What a blessing.

At 9 p.m., Amy and I had a few minutes alone and watched some of the Wild game. This made me giggle, as my dad was with me in the hospital when I was little, after a fall from a tree house. He made me watch the World Series with him...no cartoons! I was pretty disappointed. So tonight I nixed the cartoons (trust me, she watched plenty of Dora and Clifford earlier!) and we watched hockey. She began talking to me, more than a few syllables for the first time in many days. I caught some of it on video so all of you who read and pray and love could be reassured that she is still Amy! I hope you enjoy. I think some of the shakiness, eye jerking, and lack of coordination is somewhat visible, but it's not too bad.