Quick Update

 This last week has been an absolute whirlwind!

There have been some really high highs and a few lows. 

The absolute highlight of the week was taking Alex on his first college tour! As any long time followers of my blog know, we have been told most of Alex's life that he would not likely live this long. And even a year ago going away to college seemed unattainable. But as Alex has experienced some of the most stable times of his life he started talking about wanting to really get to experience college. My saying his whole life has been "there is no point in working this hard to keep him alive if I don't let him live." I wholeheartedly believe that and now I am prepared to let him truly dream and live. Alex and I are both realistic in the fact that his medical care is extensive, time consuming and at times scary because mistakes can be fatal. So with that in mind we knew we needed a little more time and that we needed to have a school that was close enough to home distance wise. (Plus he can't bear the thought of being far from Maddy) He quickly narrowed down his two top choices to University of North Texas and Texas Christian University. They are very different and both about 30 minutes from home. We have done A LOT of fundraising and speaking events at TCU and he knows he likes that school. UNT has a degree program and lots of research opportunities that really excite him, plus some of his best friends attend or will be attending. We visited UNT and had a campus tour this week and will do the same at TCU in a few weeks. He likely will not attend until Fall 2023 while he works on some independence in his medical care. We soaked in the whole experience, but when we got home I was completely overcome with emotion. I cannot believe that the sick, fragile boy who has spent well over 1000 nights in the hospital is at a place where he can go live at college! What an amazing testament to prayer and the faithfulness of God!

The week has not been as good for Maddy. She is struggling with quite a bit of pain right now. She has had headaches and joint pain daily with her pain level most days being between a seven and nine on a scale of ten. I am often struck by her toughness as she continues to push through even when she feels horrible because she doesn't want to miss out on life. We continue to hope that we can find answers and a solution to help her feel better. The other main issue is that she is struggling to swallow right now and feels like she is choking. We have a swallow study scheduled on Tuesday and hope we can figure out what is going on.  While she struggles medically she continues to amaze us with her progress both at school and horseback riding.  She is doing incredible on her assessments to test her readiness for third grade and is riding completely independently in all of her lessons now. She is currently preparing for an in house horse show where she will compete in a walk/trot independent class (no leader) for the first time. This little girl is tougher than most of us can imagine. Don't be fooled by the smiling pictures you see on Facebook. This girl deals with an incredible amount and does it with strength and grace. I am incredibly proud of her as she continues to prove herself to be an extremely hard worker and the epitome of perseverance. 

I finally have my knee surgery scheduled (April 13) and it can not get here soon enough. I have been dealing with daily knee pain for almost 6 months. I am hopeful for some relief following surgery.

Please pray for Alex as we tackle these next steps, for answers and relief for Maddy and a successful surgery for me. We are so grateful for each one of you who enrich our lives with your friendship and love.

Ali