Hi all! It's been a while. I've been intentionally leaning into as much normalcy as we can in this season of our life. With the season change in Texas, we've been leaning into lots of outdoor time with the kids and neighbors, fall activities, play dates, and of course, lots of therapy. Today is my 37th birthday, so I have some time alone and decided it was time to provide an update. 

Addison is on her last week (week 3) of intensive therapy at a new place, Fortis, in Dripping Springs. Fortis is a nonprofit that offers pro bono pediatric intensive therapies - praise God. For those who don't know, intensive therapies run about $8k each time, so to find a pro bono one has been a huge blessing. More than that, the team that runs it is amazing, and Addison loves it. She spends almost 2 hours of the three hours she is there every day, walking on a treadmil watching Miss Rachel and Minnie Mouse. What three and a half year old is going to complain about that? Right now, the name of the game, is repetition so that her gross motor skills return. By Thursday, she is wiped, and we look forward to weekends with no therapy. She continues to make great strides. She is standing for a few seconds on her own at a time, then easily falls to the side or backyards, and she has even taken some steps of her own, though wobbly. 

We continue to be hopeful for a full recovery. 

We have updated imaging happening next Friday, November 7 at 7 AM. Please keep us and Addison in your prayers that morning. We will be assessing how her shunt is functioning, so checking up on her hydrocephalus (cerebral fluid that is continuously being drained by the shunt to maintain homeostatis) and checking in to see if her blod clots have dissolved anymore. At that point in time, regardless of the status of the blood clots, we will likely discontinue blood thinners. My understanding is that "it is what it is at that point". The blood thinners have not been an issue to continue at home. Addison takes them twice a day, with no issue. We call it "sweet and creamy time", because the medicine supposedly tastes sweet and creamy, but they are extremely expensive, so cutting that cost will be some relief to our financial situation. 

We have taken Addison to the trampoline park twice in the last month. Addison loves going, and Kyle and I agreed we should take her more, because it's great for her to have to respond to the imbalance of being on a trampoline, but it is equally devastating, because she used to LOVE running around and jumping on the trampoline, and now she is at our mercy of helping her to stand and move to different trampolines. It's been nice to take her to do things she once did, but man, oh man. My heart. 

Kyle and I attended a brain injury conference this past weekend at the church where Addison attended Mother's Day Out the last two years. I underestimated the emotional impact of being there. It was very informative - lots of information of different modalities and healing therapies we can be doing to help her as she continues to heal, and that will aid her as she develops, but it was truly like drinking from a fire hose, a bit debilitating because there are so many things we can do, but all are very costly - many are not in Texas, and there are many to choose from. Kyle is good at staying steady and isn't easily overwhelmed with many options, like I am, so I know we will together come up with a plan and move forward accordingly, but I wish we could do them all, and simultaneously, I don't want to do any of them - I just want normalcy and to not have our life revovle around treatments and therapies. We will find the right balance for our family and for Addison, I am confident, but there's always trepidation as we approach the next wave of decisions. I made the mistake of talking with a mom who has a daughter who is now 13. Her daughter had a brain injury at 4, so I talked to her hoping to be encouraged, and I was initially - her daughter goes to a public high school and excels in math, but she said her daughter has emotional and behavioral challenges that will prohibit her daughter from holding a normal job and she doesn't have close friendships. I fell apart, distraught after that conversation. I walked outside to get fresh air, and I saw the playground where I spent so many afternoons of Addisons childhood the last two years playing with her classmates, where I made friends with mom, and I couldn't breathe. I couldn't accept that that womans story could be ours. Two real life angels approached me in the parking lot, while I was crying and comforted me and told me God loves me and that God has a plan for Addison's life, otherwise she wouldn't be here. I know this in my bones, but it doesn't mean I like and am not devastated by what it looks like. Please pray for my comfort. As we continue to return to normalcy, I am more devastated by how not normal our circumstances are. In spite of Addison doing amazing by all accounts, ultimately, I am her mother, and I will always be devastated that this is her reality. I will equip her for it, I will be strong for her, and I will be honest with her the whole way, and I will do whatever it takes to aid her recovery, but at the end of the day, when the days are done, I cry from holding it all. Addison, however, continues to be in good spirits and is seemingly unphased by her limitations. She looks forward to playing with her neighborhood friends, still loves watching movies and wants to eat pizza for most meals and gets excited when her little brother comes into the room. 

She is still crawling around our house, which makes me sad, but all of her movements are becoming quicker and more seamless. 

We are hoping to get her stomach tube out sometime in November. I am waiting until after her imaging before scheduling that. It's hard to put back in, so we want to be very sure there's no need for it before proceeding. We hacen't used it the last couple of weeks, because Kyle wanted to make sure she could get enough hydration not giving her any water flushes. She has done decently well - there is room for improvement with her water intake orally. I think part of that is because she loves apple juice right now, and part of it is her injury. It's imperative she doesn't get backed up, but we feel mostly confident that she will do fine without the tube. 

I am sure there are plenty more details that I am missing. For those of you that follow me on social media, I will continue to post videos of her daily therapies. My mom will too, for those of you that follow her. 

We may be fundraising again soon as we start to pick our next treatment that we want to do for Addison. Kyle attended a hyperbaric oxygen talk this last weekend, and Kyle was very excited about the possibility of that for her. Lots of decisions to make soon while also wanting to slow down this time of year and lean into the season and the holidays. Please keep us in your prayers. Kyle's work is very busy, and while things continue to improve the weight of the decisions and the memories of before and after continue to emotionally weigh on us individually and as a couple. I am truly overwhelmed by the number of people who continue to reach out to us and pray for us. Someone recently dropped off a handmade quilt for Addison - even though they had never met her. You all are tremendous humans, and I hope that gives everyone hope in humanity.