I can't even believe it. It's surreal to say that the last Sunday is bittersweet after all that we've been through here. But, like it or not, this place has been more of a home to us than our own for three months - almost 14 weeks by the time we go home. And, like it or not, we have made many memories here - both good and bad. The biggest blessing of the last three months, other than the obvious, was being forced to live day to day. It is so easy to get ahead or go backwards in normal circumstances. In these, you will not make it through if you're living ahead of your time or in the past. It's something we all know but what an opportunity to experience what it actually feels like when you're able to do just that.

Addison is taking all of her meds orally. We will go home on Vitamin D, a probiotic, and her blood thinner - so really only going home on one med. Praise God. She will remain on the blood thinners for three more months until we do another MRV in November. My understanding is regardless of what that scan shows, we will likely stop blood thinners at that point in time. I believe I shared it in my last post, but just in case I didn't, her clot in her brain had greatly reduced in size. I am hopeful it will decrease even more come November when we do another MRV. Please pray for this. 

This weekend was the first weekend since May 12 that Addison did not have to eat through the tube. Addison took her swallow study last Tuesday and "passed" with flying colors. She was cleared Tuesday afternoon to eat ALL solids and has been eating full meals since then. Last week, they continued to feed her through her tube a fourth food, just to make sure she was getting a good amount of calories. This weekend, we had to track all of the food that she ate. Tomorrow, the dieticians will count the calories and assess if she seems to be getting enough calories through her meals. That will determine if we need to continue to supplement her with some of the same tube food she was getting before getting cleared to eat. We are still giving her all of her fluids through the tube. She was cleared to drink all fluids with the swallow study, but the study showed that the liquids were wanting to go into her airway, so we are restricted to giving her 1-2 oz of liquid 3 x a day right now, but will continue to work on doing more in speech this last week. I was hoping we could get the G tube out as soon as she is able to consume enough liquid, but we found out that her wound is considered an open wound for 3 months, and even if she started drinking all the fluids she needs today, they would not remove the G tube earlier than 3 months. So my prayer is that at three months total, the tube will come out. 

Addison is able to sit up on her own on the floor and play. She still has to have someone close by to make sure she doesn't fall over, but she is getting stronger every day. We're still working on getting her head to be more upright when she sits. It's been soemwhat stuck in a forward posture for a while now, and her core is still regaining strength, but with time it is slowly shifting. Her core was weak prior to the accident, and we were actually had been evaluated just before the accident, so even though we have catch up to do, I'm looking forward working on that for her. On Thursday, she got her first bath since having the G tube surgery. Andrew got to be here for it, and they got to take a bath together. Andrew only likes baths if Addison is in them, and it was surreal to watch them be able to do something so normal together. She didn't feel confident sitting upright in the bath, even though she is capable (with assistance), so we are looking at getting her a little bath chair to sit in for some more support until she builds her confidence. We also go to take a field trip and do an OT session in the outpatient gym this week. It was a nice change of pace to go to a new environment and have her get to work with some new equipment. 

She had a few friends visit her in the afternoons last week, and she loves their visits. My mom and one of her aunts and cousins got to spend time with her this weekend, and she loved that too. She loves going in the playroom at the hospital and acts as if she isn't physically restricted. I spent the day with her at the hospital today, and she kept insisting she get out of her wheelchair. I helped her walk and stand in the playroom and play with a kitchen and Mr. Potato Head (a current favorite). She was very focused and content. She kept telling me not to hold her. She is determined and ready. Back in our room this afternoon, she got down from the bed on her own, while I held her and walked to a floor mat and then drew with markers on the floor mat. When she lays on our hospital bed, she practices sitting up and rolling over. She's got a ways to go, but her confidence and strength are getting so much stronger. She tells us it's hard. I can't imagine how hard.

We need the nurses less and less. It's weird and annoying to be inpatient when we're really only working on the physical aspect of things now. It took everything in me not to take her out of the hospital today. We are so ready to get back to our life, and I am so ready for her to do all the things she used to be able to do. I pushed for us to get off campus while we are still here, so we're going to do an off campus therapy session sometime this week. When I asked, I meant on a weekend, but I'll take anything we can get! In the meantime, we've started ordering food into our room. The hospital has a cafeteria and an in room dining service. She gets free meals to the room, which we haven't been able to take advantage of until now, so now it feels like we're staying in a hotel and getting room service for breakfast, lunch, and dinner. It's been a welcome change of pace. 

On Friday, we will get discharged sometime between 12-2. They have a bubble parade send off, where we will get to pick a song to play while we walk down the hallway, and all the nurses and doctors will cheer and blow bubbles. We've attended some others kids and they are emotional in the best of ways. We are 100% kicking off the bubble parade with the chicken dance. It's become a normal part of our routine here in some of her therapy sessions and with one of the technicians here. Kyle and him did it one day over a month ago to cheer her up, and I kept it going by making the tech do it every time he sees Addison, and now we do it as she walks down the hallway to finish off her physical therapy session and all the nurses join in. We will likely play Into the Unknown from Frozen as she *hopefully* walks out of here. 

"Every day's a little harder, as I feel my power grow
Don't you know there's part of me that longs to go

Into the unknown"

Monday, August 18 we start a three week intensive at Napa https://napacenter.org/about-austin/ . Read "Cody's story" on their website. Waterworks and so moving. She will do two hours of therapy in the morning and one hour of therapy in the afternoon five days a week for three weeks. She will also do 1-2 sessions a week of speech therapy to continue honing in her speech. After that, I am not sure yet. Our plans are very much "living" as her progress is constantly shifting. 

Pray for a strong final week here at the hospital and a seamless transition home. Our girl is going to make it all the way home - literally and figuratively. Thank you for all of the prayers and support from all over Austin and all over the world. There are no words. 

Oh, and fun fact! Billy Joel recently got a VP shunt put in, just like Addison.