When I told you we were moving, I didn't quite realize how that would go - lol! After Mark arrived, I went to take a shower and came back to Maia's room to see some friends from church with armfuls of provisions for us. Our nurse was standing at the door and asked me if we were ready to go. HUH??? I hadn't even combed my hair after the shower, but apparently it was time for Maia to be off the unit. So I was literally grabbing things from the room and throwing them on Maia's bed as they were wheeling it down the hall. Our friends were kind enough to make the trip with us and visit a little in Maia's new room as she was getting settled.
The day nurse here on the medical unit was awesome, took lots of time to explain the unit routine and how things might be different. Maia was really agitated and anxious as a result of the transfer and pretty much out of control - full blown meltdown. Carla (the nurse) asked if I wanted to crawl in bed and snuggle with Maia. This had been discouraged in the ICU because of the drains, tubing, etc. Carla told me that none of that mattered, they would work around anything that Maia had, but it was important that I be close to her. What a wonderful thing... at least for this momma. It may not have made a whole lot of difference for my girl (she still needed medication to get her settled down), but at least I was able to hold her in my arms, talk quietly - reassuring her that it was going to be ok. Eventually, she was able to relax a little bit and calm down. Docs came in and introduced themselves shortly afterwards which was nice.
Occupational therapy came to work with Maia this afternoon (they had seen her this morning in the ICU for some exercises, too). They did a very basic swallow evaluation, trying pudding, water, and a tiny piece of graham cracker. Although she did not have a strong drive to take anything orally, the therapists both felt that she was able to control the textures and swallow without evidence of aspiration. So thankful for that. They will continue to work with her for a few meals to ensure there are no concerns, before allowing us to feed her. Such a change from my sweet girl's usual appetite. It was difficult to see her sitting in a specialized chair with little ability to hold her head up or use her arms/hands. She is such an independent, determined kiddo that I know it will come back... I just want it to happen now (yep, a little unrealistic I know).
The admissions coordinator from the rehab unit came to visit with us, ask some questions about Maia's pre-hospital function, and explain the unit routine. Maia will have PT and OT twice daily, as well as speech therapy once daily. She will dress in her own clothes and follow a "typical" daily routine. Stay is anticipated to be 2-3 weeks. Staff will help arrange any adaptive equipment we need before bringing her home.
I'm still trying to reconcile this with the "old" Maia. My heart just hurts and honestly, it feels a bit overwhelming to think about the journey ahead. I'm sure I will need to remind myself often to focus on one day at a time and not try to figure out what things are going to look like a year from now, six months from now, one month from now, or even one week from now. God knows what the future holds and I trust that He will see us through the difficult moments. While the original context is not quite the same as our circumstances, God showed me this verse from Haggai this morning and I believe He meant this in relation to Maia.
"'The glory of this present house will be greater than the glory of the former house,’ says the Lord Almighty. ‘And in this place I will grant peace, ’ declares the Lord Almighty.” - Haggai 2:9
Can I ask for your prayers specifically for Matthew? Mark and I are going to make some changes so that he has more time with us. He is loving time with Nana and Papa, but there are also some behaviors that are likely a result of our absence. Even though we try to explain in a way that he understands, Matthew still struggles to grasp why Maia is sick and can't come home as well as why we are spending so much time at the hospital.
It is my hope to make a post in response to your encouraging comments one of these days. I am sustained and uplifted by each of you and your prayers for our girl. I tell her every day how much she is loved and cherished by so many people. Thank you always seems so little, but my gratitude knows no bounds.