Our care team asked us to stay an additional 1-2 weeks earlier this week. Addison is progressing so well, they want to get her even further before we go home. That same afternoon, we got off the waitlist for a three week intensive program outside of the hospital that starts Monday, August 18, so we agreed to extend our stay here for one additional week. Our new discharge date is Friday, August 15. We will spend that first weekend at home and then Addison will do a three week, five days a week, three hours a day intensive that incldues PT, OT, and Dynamic Movement. I am excited to know a little bit of what our post hospital future holds and to have a plan, albeit short term, in place. The place we got off the waitlist for was my initial first choice outpatient program, so I am eager to see how this helps her. The downside is that the location is even more North of where we are now, and her therapies start at 8 AM every day, so we will be commuting every morning and then will have to go back in the afternoon for her third our, but it's three weeks, and we will make it work. 

When initially asked to stay an additional week or two, I felt defeated. Even though this is a great thing, I was disheartened to be staying at the hospital for even a moment longer and keeping our family apart, I equally knew it was the right thing, which made it even harder. 

Addison has eaten waffles, pancakes, sausage, eggs, cereal, and potato chips this week. Yes, you read that right. She swallowed them all. She is doing great with solids and we are working towards a swallow test. They may hold off until our last week here, so that we can get her really proficient with swallowing liquids before testing. The swallow test entails them mixing barium with different food and liquids, having her swallow, and then observing where all the food and liquid travels to and making sure it's all going to the right place. I requested a water soluble option to the barium, but the one I requested isn't carried at the hospital, doesn't do well with the pediatric population and cannot be thickened with liquids, so we're sticking with barium. I am apprehensive, because I had to do a similar study with barium when I was 15/16, and I had an awful response to it. I was told that they don't usually have issues with it, so I am hopeful that will be the case for Addison. 

She continues to speak in full, articulate sentences. Every day her speech improves and the speed and consistency approves. 

She has had two friends visit her this week, and she REALLY enjoyed their visits. She is doing what she can to play with them, and we bring her toys so she can participate, but her eagerness and desire to play and interract is the same as it was before - just limited in abilities now. 

She continues to do well in PT & OT. She is standing for longer periods of times, walking every day. They have her walking with a walker, but she usually says EFF the walker, I want to walk. Yesterday, we had the gym to ourselves, and Andrew was here, so she was able to play tag and "chase" Andrew around the gym. That was very motivating. So much so, that we arranged for us to have the gym to ourselves again this morning and have Andrew here, so he can be a part of her physical therapy session. She continues to need less assistance, but the coordination that walking takes will definitely take some time. She had a weak core prior the accident, and we were actually about to start PT & OT to help with some balance and coordination, so we've got more stacked against us now. We are starting toilet time, which just means we're reintroducing the toilet to Addison throughout the day. She was mostly potty trained before this, except at night, so I am excited to get that going again. 

She has a few nurses and providers that she really likes and enjoys. It's weird to say that the hospital life has become a normal part of our existence, but it has. One of the most challenging things for me prior to the accident in staying home with the kids was to have a routine and stick with it. It felt elusive. I loved the freedom of being home and getting to do adventures and go where the wind blew us, and the kids change so frequently I used that as an excuse to not continuously adopt a new routine. It's been nice here to have a routine created for us and to have nurses holding us accountable in sticking with it. Annoying - but nice. It's been an eye opener to have this time of reflection to evaluate priorities and what I really need as a parent to best support myself and our family. I am looking forward to taking some of these lessons home, when we get there. 

We are in a good rhythm as a family. I've been able to work out a few time a week, which has been so nice. We've gotten so much time together and with both sides of our families - an unexpected blessing. Our parents will be continuing to physically support us when we are home, which will be necessary and such a relief. 

Addison has vocalized that standing and walking are hard and cries when I tell her we are doing therapies, so that she can walk and play by herself at home. She seems to get overwhelmed when I say that and says she can't do it and needs help. It's heartbreaking. I always assure her we will help her as long as she needs help, but we want her to be able to do things on her own again. Please continue to pray for us and Addison. Pray for her physical stamina and mental endurance and peace in her heart as she continues to do hard things daily and adjust to her new normal.