December 3 - Blythedale - Day 14

So Reth is back to work and I am here at Blythedale with Chloe.

It has not been the easiest start but we keep chipping away. The past week and a half, Reth has been here to observe and learn many different PT/OT and speech exercises, learn how to feed Chloe and administer her medicine and take care of her GT site. He has been amazing with her and I have watched him move around her new routine with such ease and confidence. He has seen Chloe make lots of baby steps with her teachers and therapists - reaching out a bit more for toys, rolling over slowly, organizing her mouth a bit more with different oral stimulation tools, and even sucking on her therapists finger. Thinking about all these things, they seem so little and trivial but these are actions that we didn't see or saw very little of over the past month and a half.

Chloe is a newborn again. She needs to be cradled and needs lots of head support. She needs to be taught everything. Slowly, slowly she is remembering different actions and movements and has become a bit easier to work with. She is easier to calm when she is moved through different positions and is able to tolerate more and more activities. She has been more alert during the day and restful at night which has made her evaluations and assessments much more successful. Chloe has now been approved for 3 different therapies of 30-45 minute intervals of PT, OT and speech. A feeding therapist will begin with her in the next week or so as well. She also has two sessions of school, one for two and a half hours in the morning and another hour and a half in the afternoon. It's quite a busy day for her!!

It is a very slow process rebuilding and retraining the brain. Each day we see glimpses of what is possible but understand that it will take time. It has been eye opening to think about how many signals the brain needs to send to the rest of the body in order to perform a task. Even just rolling Chloe to her side takes a lot of little pushes and adjustments of her head, her arm, her hip, her leg, her feet. Pat, pat, pat, rock, rock, rock, and a few minutes (not seconds) later she eventually calms. It is indeed easier to do this now than it was just a couple weeks ago but what used to be the simplest of tasks is now hard work for her.

As for me, well, I would be lying if I said things were fine, I would even be lying if I said things were okay. I (we) are hanging in there. It's a big adjustment and there is a lot to learn. Slowly (very slowly), I find people here that I can trust and can talk to about my frustrations, my questions, my goals but this too will take time. It's not easy being away from Reth and Olivia and being far from home but as we watch Chloe trying and pushing to accomplish so much in her jam packed day, we know that as hard as this is on all of us that this will give her the best chance to a brand new start at life.

Much love and thanks,

Michelle, Reth, Olivia and Chloe