Sunday and Monday, December 19th and 20th

Sunday and Monday were crazy busy days for us, not just at the hospital but for the family and Christmas season. We had a family party thrown in the mix of all the miles and hours driving, Traumatic Brain Injury Teaching, range of motion, G-tube and other miscellaneous things we were required to do.

So let’s start with Sunday! We started with getting dressed and doing hair. Sounds normal enough and that is entirely the point. We are working on getting her on a schedule. With Brain Injury Kids it is important that each day look more or less the same because repetition will be critical the relearning of all her basic skills.

After the morning routine, we went to the branch sacrament meeting held at Primary Children’s Hospital. It was the best Christmas program ever. The read the Luke 2 telling of the Christmas Story with Christmas hymns between the different parts. The best part was the hymns were sung by the members in the audience. There wasn’t even one talk at all. I think every ward should go with that set up!

After that there was more TBI (traumatic brain injury) teaching. We average at least an hour every day in, what I call, “workshop”, learning the ins and outs of TBI. Of course, that was in addition to our regular regime of meds and feedings.

John and I left early for the Scott Family Party! It was a great party, we were missing Maddi for sure but in Maddi style we were laughing and joking with great food and family. It was sobering if I thought about it too long but Maddi would have wanted us to have a great time so we did.

Monday was all about getting ready to move. Paperwork, Paperwork and more Paperwork! We spent more than 2 hours in “workshop” that day as well as going to the new facility to get a glimpse of what we are in for. The new facility is considered transitional for Maddi but is called home for most of the patients there. It was a bit shocking for me because I didn’t see any parents and all of the patients that day were long term, multi-need, patients. I was worried that Maddi would see herself as the same and lose motivation to work hard. She is resilient and will do just fine; it is just the “momma” worry that had me concerned.

Therapy was great on Monday! She initiated and advanced 6 steps with her legs in the standing position with the PT/OT people supporting her trunk! That is huge. The speech therapist also confirmed the yes blink that I was seeing! Talk about validation! I love it when I am truly seeing what I am seeing. In this situation there is a certain amount of “hopeful thinking” that can come into play when you are looking for purposeful movement. Here again, envision that happy dance!

Maddi is doing so much better holding her head back. She is an overachiever in holding her head forward but needs to gain better control of her head. I figured having a pillow behind her head for 24 days would make anyone get stuck in that position so I put a stop to the pillows all the time. It has made a huge difference!

Anyway, now you have the most recent update.