I don't know how the time gets away from me! It has been two and a half weeks since I last updated. We have had a busy start tot he sumer! Alex officially finished First grade and didn't want to stop. He immediately asked to start our next curriculum!
This week was VBS. I had to chuckle to myself when I saw the theme: Inside Out and Upside Down on Main Street. So very much of our lives is inside out and upside down. However, somehow in the midst of our craziness we see so many blessings surrounding us. The Kids spent the week learning how Jesus makes a difference every day and the lessons he wants us to learn. They talked about gratitude, compassion, forgiveness and faithfulness. I have watched Alex see these lessons play out in our lives throughout the last year. I was commenting to a friend this week that I have loved watching Alex's faith grow this year. He feels it, he believes it, he lives it. It is something he will certainly need to lean on in his life. One of my favorite moments of the week was a discussion Alex and I had in the car Thursday morning. He asked me about jesus coming to live among the people. I reminded him that God sent Jesus to live on Earth so that people could see him and learn the lessons God wanted them to know. Alex's response was what all of us Christians should say..."Mom, you don't need to see Jesus to learn about God because he is in your heart." What a statement out of my wise little man! We continue to be so very grateful for the amazing family we have at Keller First United. They embrace Alex and make him feel safe and loved. Alex was also thrilled to have one of his best buddies, Walker with him all week. So overall it was an awesome week. Alex is exhausted and paying a little bit of a price. He has been running a low grade temp since Friday. We are hopeful it does not get worse so we can stay home.
In medical news things have been pretty good. Alex had his 7 year checkup with Dr. Benzick and other then his growth, Dr. Benzick was pretty happy with where we are. We got him caught up and discussed the coming months. We are thrilled that Alex continues to be able to go without his nightly IV fluids. He is certainly not as hydrated as would be optimal, but he is holding his own. Because we are not using his port every day, Alex has been able to resume aquatic therapy with his OT. He is loving being in the water and is making some progress towards swimming independently. We head to Houston the first week of July to check in with Dr. K and Dr. N to discuss some concerns and make sure we are all on the same page.
One other big development over the last few weeks....All of us in the Mito community have hoped and prayed for a treatement to be developed to treat or help mito, but most of us did not hold much hope of it happening in our children's lifetime. Most of us knew there was a trial going on on the West Coast, but there really was very little info coming out. In the last few weeks we have learned that this drug has shown VERY promising results and they are opening up the clinical trial to a larger pool of patients. The criteria is still pretty stringent, but Alex is being strongly considered to participate. Please pray that this treatment continues to provide good results, that if it is meant to be Alex gets into this trial and that he is safe during the course of it. We all pray that this drug becomes available to all mito patients shortly!