Monday, July 14. Addison had a rough day of therapy today. She seemed to be very tired in all therapies - a lot of crying and screaming and flat out refusal to do things. She had a great morning with me before therapies - engaged and eager for the day but just did not want to participate. We just decreased her propranolol dosage, so I am concerned it's linked to that. As a reminder, propranolol is used to help her agitation as she is "emerging" and helps keep it at bay, so that she can participate in therapies. By now, you've likely picked up on my general aversion to all drugs, but more than that reducing her dosage of anything at this point feels like another milestone - another checkpoint of us gaining more recovery. The thought of having to go backwards and reup is more than disheartening. Kyle and I traded off today, and I went home. After therapies, Kyle messaged me nonstop letting me know that she is doing so much more than yesterday. She chewed on a straw - this is something they practice in speech to help her relearn how to chew. She said Aladdin clear as day when she chose between Aladdin and Frozen. She is swallowing well and singing all the songs in the movie and not opening her mouth while singing more than she needs to. When she saw Kyle she put her hand on his face. She wasn't an overly affectionate child before the accident, but she seems to be much more so now, especially with me, and I love it. Kyle also let me know her response times are almost instant, as compared with having to wait 10 seconds or more when we first got into rehab. She said the word tongue and is turning the steering wheel to a big contraption at the front of the hospital that releases lots of balls through different animal mouths - not sure that I explained that well, but I'm typing this in the wee hours of the morning because I can't sleep in the hospital. It's a big interractive exhibit that kids play with right when you enter the hospital. So, therapy today was not great, but time with me this morning and Kyle this evening has been more than great. My concern with therapies not going well is feeling like we have to prove to providers that she is doing well. If they don't see what we see, that changes the discussion around decisions to be made about her care, and that is challenging. Sometimes I forget that she is still only three, and having an off day is a normal thing in normal circumstances. It really makes me pause to respect how freaking hard she is working and how well and resilient in spite of everything she has been through and continues to go through. 

Tuesday - This morning she brushed her own teeth with Kyle. They lowered her Gabapentin (Britney milestone!). Addison has a Neuropsych team sitting in on therapies now. They are psychologists who specialize is neuro issues and will be writing up a report on how she is doing and her current condition once we get closer to discharge. We will use this when going to therapies once we leave the hospital and any school options we end up choosing. They let us know that days like yesterday are common and expected. Addison walked SO well in PT this morning and BENT over to pick up Easter eggs. Her bend over was even more impressive than her walking. Kyle said that she was frustrated because she didn't want the PTs helping her walk, which is a relief to know she is that motivated! She got to eat watermelon in speech today. I brought those little rings with mesh bags attached to them that you put food in for babies to try. The mesh is designed so they can chew the food without choking on the food, so we did that with watermelon, and she was very excited to eat it and get the juice. Felt right for her to be eating watermelon in the summer. She wants to eat food so badly. Everything we eat in front of her she gets very vocal about wanting to try. Speech has cautioned us to continue doing food and drinks with their supervision. Ther is risk of her aspirating even with small amounts, and there is concern for any food going into the lungs and causing infection. I never would have guessed that it's not just a choking risk. She was sitting in the swing during OT, and I was so relieved that she was smiling! This is her third or fourth time to try the swing since being here and her first time to enjoy it. She LOVED being on the swing prior to the accident. This week, I want to prioritize more time hanging out at the nurse station when she has down time that isn't rest time. She enjoys interracting with them, and I want to continue that trend. We spent some time sitting with the nurses, and she seemed to feel like such a big girl watching them talk about orders and type on their computers. She had a dear friend come visit her at the hospital today, and we gave her a tour of the fun places at the hospital - a playroom, the courtyard with a waterfall, and the gift shop. Addison LOVED having her friend. She had a huge smile on her face and eagerly grabbed her hand (after accidentally smacking her in the face - still working on that arm control when not in sight). She engaged with her and wanted to see her every time she went to play with something and they turned the steering wheels to the exhibit at the entry of the hospital I mentioned earlier. Andrew came for a late afternoon visit, and she was overjoyed to see him. I put him on her bed, and he crawled right to her and just layed on her belly. She belly laughed and wrapped her arms around him. They didn't get to see each other yesterday, and it was clear that they missed each other. Andrew was trying to suction her and then himself, and she found that hilarious. One other thing that came to mind while reflecting on the day is that she loves to look at an owl painting in the hospital. We used to have an owl that lived close by our home, and we would hear him every night and early in the mornings. We sit in front of the owl picture and she said owl today and whooed! Oh, she also blew bubbles today and has been saying bubbles. It sounds like buh buh, but she always wants to do bubbles now. She has loved bubbles, since she was very young (who doesn't!?), so it's nice to see her enjoying them again!

It's now Wednesday. We've been up since 5 AM. Addison had a bowel movement - always the sign of a good day here, but wasn't able to go back to sleep, so we are both sleepy today, and I'm now anxious about how therapies will be today. They start at 8, which is earlier than normal. We've been laying in her bed, and she has been babbling this morning. She said baby, and then we were pointing to all the baby body parts, which was her own initiative, and she said ear (eeeuhh), nose (nuhhh), and lips (liii). I asked her if she was going to have babies one day, and she nodded big. Then we said a prayer that God would give her all the babies her heart desires one day. I've had that prayer a lot these past few weeks. 

As she continues to babble more, I've realized I want and need my prayers to be more specific. I want Addisons speech to be back to where it was and to be in line with her peers in time. I want her words to be clear. I want her to be able to swallow again consistently and easily. I want her to not struggle with speech. I want her to get married and have babies one day. I want the remainder of our time here to be full of momentum and also the rest and recovery that Addison needs to maintain momentum. Please also pray for no more tube issues until our G tube surgery next week. Kyle and I also toured a special needs preschool yesterday. Please pray for the next less than four ish weeks. There are so many moving parts and so many unknowns - I have a hard time making decisions with tons of options in normal circumstances, and with the unknown factor of what Addison's needs will be when we discharge, it's even more challenging to make decisions. We have to be prepared for everything and make decisions based on where she is at now, even though that may not be our reality. Not my jam. Please pray for overwhelm to remain at bay and for ease in proceeding amongst all of the variables.