Week 10 starts tomorrow. Our discharge date is now August 8 instead of July 25. This can always change, but this is the latest and greatest. A great friend took me to Target this week, so we could give the hospital bathroom a "mini reni", and it has totally changed my mood every time I am in it. Thankful for good friends and an aesthetically pleasing bathroom right now.  

Addison had an incredible week last week - her best yet. She is almost completely off of Propanolol and we are starting the wean off Gabapentin today. Praise God. I want everything out of her system and just want her body to be able to recalibrate and function without medications again. Once she is off these, she will be on stool softener and a gut motility agent. They take poop very seriously in inpatient rehab, especially with brain injuries, because once you get backed up, it can create a viscious cycle for the patient. I'm ready to get off those too, but I've seen the discomfort with being backed up from drugs and lack of movement, and I don't want that either. I'm hoping as she moves more and more, we can continue the discussion to wean off thoes as well. She started Vitamin D supplementation about a week ago. Her markers were low. She's getting all of her vitamins and minerals from the food she is consuming, but I guess it isn't uncommon with brain injuries for a patient to be lower in Vitamin D and need to supplement, and a Vitamin D deficiency can actually lead to weird fractures in patients. When they shared that information, I decided to go ahead with supplementation immediately, but generally, I like to investigate into these things and try and figure out why there might be a deficiency, but I knew this time I didn't have the bandwidth. The wheels are still turning, and I'm actually wondering if it's her Gabbapentin she is on. Upon a quick Google search Gabapentin works by binding to voltage-gated calcium channels in the brain and nervous system, particularly the α2δ-1 subunit. I know that Vitamin D absorption is linked to calcium levels, so I am wondering if the Gabapentin is impacting those which is impacting her Vitamin D absorption. Then, of course, we aren't getting nearly as much sun as we normally would, so that could be a factor too. If you're someone who may have more insights into this, message me! I'd love to learn more. 

Addison is saying more and more words. I think with my last update, I shared she was saying mama. Now she is also saying dada, more, a very clear no. Those words sound the closest to what she is saying. Other words she is saying that take us more time to determine are bubbles, Andrew, all doone, cheese (like when you are taking a picture), moo (like a cow), and apple juice. 

She discovered her tongue two days ago, and now I have her licking every food item I eat in front of her. She still isn't swallowing liquids well or consistently, so we aren't able to attempt to eat solid foods, but my girl is READY to eat. I was sitting in the room this week, and I gave her a tortilla chip to hold, while I pumped milk. All of a sudden I heard her chomping a chip, and I was like OMG! I am the only one in here. She had brought it all the way up to her mouth and was chewing a piece. The next day I was eating a PBJ, and I put it to her mouth (PBJ kiss) and she opened and tried to bite. Today, I brought in crackers and a sandwich and she was nodding and pointing and saying she wanted them. I let her lick the salt off of a cracker. I put chocolate from a chocolate chip cookie on her lips, and I watched her lick them endlessly. Yesterday, my mom got her a huge bubble gum lolipop and she was licking it over and over. She wants food so badly, and is SO MOTIVATED by food. It just kills me not to let her try when she is so motivated, and like this whole journey makes me feel like we're moving at a snails pace. Of course, I understand it's risky to try food, but that is not the point I am making. 

Our G tube surgery is not scheduled for another two Wednesdays. This was really disheartening, because we were hoping the surgery would be last Friday once we made the decision. It was a lot to accept, but once we did we were ready to rip the bandaid. We had another incident with the NG tube coming out this past week. I was picking up Addison, and the whole face sticker that holds the tube against her face peeled off on my shirt, and the tube came out with it. Ugh! It makes me really nervous now, because it is such an ordeal when it comes out, now that she is hardly medicated and very aware of what's going on.

When they do the surgery, they are going to take adavantage of her being sedated and do another MRV (imaging of her blood clots) and a hearing test. My understanding is there isn't a concern for loss of hearing, but because of where she was hit, they want to do a test to make sure there isn't anything that we should be concerned about. The patient doesn't have to be sedated for the test, but they have to be able to not move, so it will be easier to do it while she is sedated. I am praying for a miracle and that she just surprises us all this week and starts swallowing consistently and eating up a storm. Please pray the same. When I shared that with one of the head NP's with the rehab unit, they cautioned that it generally will be a few months still after being able to eat before a patient can consume all of their caloric needs, so we would likely still need to do a Gtube surgery. I've accepted that this is our likely fate, but I also like to believe in miracles and like proving people wrong, so here is to hoping. 

Addison gets to go swim again on Tuesday. Her PT said she will likely get on the treadmil this week with the zero gravity harness. She practiced walking while pushing a grocery cart yesterday, and it was the first time that she has attempted walking where she was focused the entire time and not upset. She got to ride the bike again last week, and it was the first time of the three times she has ridden it, where no one had to hold her head up or push her feet to get the pedals moving. She turned the handlebar left and right on her own accord, and everyone was so impressed. 

She continues to engage with nurses - high fives, smiles, hand waves. We had a nurse from the trauma unit come visit her today, and she was moved to tears when she saw Addison. The entire hospital seems to know us, Addison and her story. Everyone is amazed by her progress and is so happy to see her so improved. It is so nice walking out of our room in the mornings now and how our interractions with the nurses have changed from just us greeting them to them greeting Addison. She is having her own relationship with people in the hospital, and now I feel less and less like I have to be right by her side anytime someone comes into do vitals or something else. It's been a relief not just for myself, but for her. Last week, my mom wheeled her out to sit with the nurses, and she seemed to really enjoy that. The nurse showed her her computer and what she does and told Addison she listens to people's hearts and let Addison listen to her heart. This week I plan to have her spend more time out at the nurses station when we aren't in therapies, so she can watch the workings of the nurses. Who knows, maybe she will even be inspired to be a nurse one day - she has always been very helpful and nurturing, so I could definitely see it. 

She sang ahhhhahhaahhhh from the Little Mermaid this morning clear as day. She loves waiting outside the hospital in the morning and evenings watching everyone come and go. Some nights Kyle will drive up in the evening when it's his night at home and bring Andrew, so I can nurse and we all say goodnight and hang out outside before bed time. She is turning her head SO well when she watches people come and go - seamelessly even. 

Speaking of nursing, I was able to get some breast milk from a generous mama. I was giving Addison mine, but it seemed to make her gassy. I suspected it was because I've been eating gluten and dairy and she is strict no gluten and dairy, so I put I joined a milk Facebook group and found tons of mamas willing to give me milk for her. I've read that breast milk can help with brain injuries. Unfortunately most mamas were not gluten and dairy free, and lots of the ones that were had been on medications, and given her injuries and all the meds etc she has been on, I really just didn't want to mess with additional meds. I found one mama whose milk met my criteria, and an old friend picked it up from her in Georgetown Thursday and brought it to the hospital. We aren't able to give her the breast milk for nutrition, because of her age, but we give it to her with her water flushes as part of her hydration. Unfortunately, this milk seems to be making her gassy too, so I think we are going to pause with the breast milk for now. 

Kyle and I are going to tour a special needs preschool tomorrow. I've heard wonderful things from lots of mamas. While I hold hope that this is not our forever reality, it is our current reality, and we are having to prepare for the fall. I am really sad, because Andrew was supposed to start at her Mother's Day Out program in the fall, and I was so looking forward to bringing them together. 

This week, I obtained 156 packs of the feeding tube food that Addison eats. It's listed on a an equipment closet website located in town. They have a ton of medical supplies and equipment that you can pick up for free. You just check what you need on the website - if they have it, you email them and they arrange pickup details. I was so thankful someone at the hospital noticed there was some there, because that saves us a lot of money! Here is the website for the organization for anyone interested. We also picked up something to shower Addison with in our shower when she comes home. It's like a beach lounge chair on wheels. https://cpathtexas.org/?gad_source=1&gad_campaignid=232930992&gbraid=0AAAAADlD2DAls-BGhWAx012g23jWlOVst&gclid=Cj0KCQjwss3DBhC3ARIsALdgYxO9_OGS8WL_7ii1S49HV6FY-d0vTxuwQW3SwfBd6_xbMznyTxe4SXIaApWTEALw_wcB

Yesterday an old friend from Houston drove in to town with her mom and daughter and spent the afternoon with us. Addison loved interracting with her nine year old daughter. She is more and more restless in the hospital room and enjoys visitors interracting with other kiddos and watching other kiddos, just like she did before. 

That's all the updates I can think of for now. 

Current prayer requests: Addison continues to recover at the rate she is recovering currently. That walking becomes more and more comfortable and natural for her. That we miraculously walk out of this hopsital without a Gtube. That we stay sane with another 4 weeks in the hospital. That communication becomes easier for Addison - that words become more commonplace - that her mouth REMEMBERS. That she starts to consistently and easily swallow, so we can start working to try and eat food. For her heart and mind during this challenging time. For our hearts and minds. For Andrew. For our providers. For our parents. That overwhelm would stay at bay, and that we would continuously be covered and protected in clarity in decision making and peace with constant changes and unknowns for the future. 

Oh, and it goes without saying, Andrew and Addison's bond remains as strong and silly as ever.