Day 4

Today was fantastic! First of all, Elena slept for the first night since her surgery. BIG DIFFERENCE. She also continued to eat relatively well, with no nausea issues. Overall her mood has been good.

The main goals today were to 1) get her to eat more, 2) do some PT (PROM, standing drills) and work on her confidence (having fun). She didn't really eat well until lunchtime, but that was alright. We did 2 major PT sessions, (a 2-person job). She did get her heels almost down at each session--the second session was later in the day, without a nap--and we did standing drills for over 10 minutes! The drill involved throwing a beanbag to a toss-across game, and when she threw the beanbag her feet barely moved off the floor (normally her spasticity kicks in when trying to move either her hands or feet). She still resists putting her feet on any surface, either due to pain, sensitivity in the feet, tiredness/poutyness, or confidence. When doing standing drills we hold her under her arms--today we did get her to bear some of that weight in her hands AND feet (holding on to a surface while partially standing).



We did PROM every 3 hours until mid-afternoon, after that I forgot until her bedtime. Her range looks great, and she is more relaxed and does not shy away from anything touching her feet. She also has excellent "potty awareness"--the nerves they cut are extremely close to those responsible for bowel/bladder function, but as of day 2 she has been informing us of her elimination needs.

Another goal is to sit her up 1-2 hours per day, either in a wheelchair or other chair, provided her joints are at appropriate angles. She can stay in a sitting position (involves trunk strength and balance) by supporting her weight on both sides, or holding on with only one hand. After enough time, she will fall to one side. When in her wheelchair for long times, she will list, but she can sit upright with voice cues. We prop up her arms for balance as well as fit (the wheelchair is a little wide for her).



She does ask to "put her shoes on" when wanting to do something out of her current range--she needed her AFOs and shoes in order to move well (balance foundation) prior to surgery. She thinks that by putting these on, she will be able to move like she used to. It will take her a while to realize that isn't the same now. I'm not sure when we'll be using her AFOs, but it isn't now.

For fun, we played hide-and-seek in the lobby under construction, played "school" with Grandma, and played with her toys given to her by visitor friends (as well as watching lots of Curious George). I'm seeing more and more of my girl E every day, only LESS TIGHT. Dr. Elias came by this morning at rounds and said she looked "perfect". WEEEEEE!