Yesterday we celebrated Andrew's first birthday at the hospital. We invited some families with friends of both Andrew and Addison's, and we had a lovely celebration. We ate cake and pizza. We did the chicken dance and pinned the tail on the dinosaur. Addison had a great time seeing some friends of hers. It was so nice to see her interracting with her peers. As we approach dischage, I can feel a new layer of mourning coming up. In the hospital, our focus has been recovery, and recover she has. You see a lot being in a hospital that makes me count our blessings, in spite of our circumstances, but something about leaving the hospital and being in the normal world makes me feel the weight of our circumstances more. Here, recovery and getting better is normal. In the outside world, we will be the exception to normal, and I'm feeling really sad about that. I can really feel the distinction between our prior circumstances and our current circumstances now, especially for Addison. I am feeling relieved to not have our family split in two anymore, but I am feeling sad for what she used to be capable of and what she currently isn't. Today, we didn't have therapy, but I was doing therapy with her on my own at the hospital, and I had her walk to her wheelchair, and she just broke down in tears, and told me it was hard. I can only imagine how hard it is. We have daily talks in the morning, after she has had rest about why we are still here, and why we are doing the things we are doing. She understands, but understanding doesn't always make circumstances easier. I will say, that being around her peers yesterday, definitely seemed to ignite something in her. A remembrance. My friend brought it up yesterday, and I agree that sitting in a hospital results in your body adapting and getting used to its new normal. But seeing the kids run around and play yesterday had Addison taking a ton of unexpected steps with Kyle on her own accord. So, I am hopeful that home will bring new recovery too. 

The G tube surgery was a success. She handled her feeds with the belly tube with ease, and we are back to normal feedings. Kyle and I are starting to get trained in how to use and care for the G tube. There was more bleeding than they expected, but they weren't concerned about the amount. They left her sutures in a couple days longer than they normally would because she had been on blood thinners. The sutures came out this morning. Kyle said she handled it well, and we are now back on blood thinners. (They stop blood thinners 48 hours before surgeries). Speaking of blood thinners - one of the things we did while she was under anesthesia was get another MRV, which checks on her clots, and we also did a hearing test. The blood clots are dissipating substanitally!!!!!! They weren't able to provide a percentage of decrease, but they were very pleased to see how much. We will do another MRV in november. The hearing test...we were told that Addison's right hear was basically unresponsive to the hearing test they performed Wednesday. The only thing they could definitively tell us is that her right ear likely hears things differently than her left, but they cannot tell us to what extent at this time. This was a complete shock, because based on our lived experience, her hearing is completely fine. We were told the hearing loss/differntial is speculated to be a result of her hydrocephalus, which is the fluid swelling that resulted in the shunt surgery. We're putting pencils down on this issue for now until we're out of the hospital. Once we are out of the hospital, we will need to get an ENT doctor and do some additional hearing tests to get some further information. The good news is, her ear anatomy is fully intact.

In therapies, Addison now works on standing and walking every day. She gets upset every time she has to do PT. We were hypothesizing it was because it's the hardest, and based on my experience yesterday working with her, I do think that's why. Walking and standing are really hard for her. My mama heart hurts to hear that, but I desperately want her to walk and stand on her own again, so we continue to have conversations about it before our day starts each day. She continues to stay the course in therapies even when she's tired or doesn't want to do something. It's a fine line with a three year old and in these circumstances. You want to push them, but you also feel bad that they're even in this situation. Walking is getting easier. Standing is getting easier, though I will say now that I am being trained in how to help her with her PT and OT, it is a lot of work to sit there and hold her and give her body feedback. She has gotten so big since being in the hospital, and dealing with dead weight for an hour is a challenge. It makes me really respect the therapists that much more. You're not just dealing with the physical aspect of maintaining her body in space. You're also having to observe her body and make adjustments while engaging with her. It's a lot! 

She is speaking in full sentences. Her speech can be slower than normal, but every day her speech becomes more and more easy to understand. Yesterday, I asked her where we should go, and she said the word cafeteria. When she says words like that, it sounds like she is sounding out syllables - caf a ter i a. I am so thankful to have her talking again. It was lonely not having her to interract with pre shunt. She is saying all the things she used to say prior to the accident - mama, what are you doing? mama, where are you going? mama, i need you, and many many more. It's very comforting, and her intelligence is intact too. I'm unable to think of specific examples, but I've been so impressed with some of the things she has said and observed this past week. 

Some fun happenings this week: She got to interract with Aladdin & Jasmine, she got to pick out Kendra Scott bracelets for me & her, and she had a visit from her cousins, which she always enjoys, and she got to see lots of kiddos from outside the hospital. She is loving hanging out with kids that come see her. 

Please pray for a fruitful week of rehab. We are hoping that the gains outweigh her not wanting to be here anymore. We're doing our best to make the most of this remaining time before home. Please pray for our decisions as we go home. We are starting to piecemeal together outpatient therapies, but are still waiting for some waitlists are are on and are weighing costs and benefits of different options. Anticipation remains for me. Kyle has been able to step away from work for the duration of our hospital stay, and he is starting to step back in. That means the day to day will fall on me, and I'm nervous about the new aspects of our routine and how I will carry that. Please pray for peace, clarity, decisiveness, comfort and ease as we begin our new normal.