The last month has been full! Full of laughs, cries, fights, snuggles… all of the things that come with family!
Alek is slowly adjusting to life at home. He is becoming more independent with some daily tasks and is realizing he can still do things he used to. One of those things is riding a bike – it has probably been a year since he rode his bike and he did not think he would be able to do it (and honestly I was nervous about it too), BUT we have learned to never sell ourselves short – he got on and rode without any problems! He was so proud of himself and the smile that beamed on his face was priceless!
He did have a weekend stay at Toledo Children’s a few weeks ago. He had the start of some sort of viral infection and started to go into adrenal crisis. We are thankful for his care team there and the communication they have with his team in Minnesota! He also had to have fluids and IV steroids at one of his weekly visits to his oncologist because, this was her medical terminology, he just seemed “blah”.
His GI issues are still not resolved. He finished his first round of flagyl, and then things started to get worse again. So his team decided to give it a second go. We just finished the second round, but things still are not 100%. Because of this, Alek will have an MR enterography when we go back to Minneapolis. This will give the doctors a better idea as to what is causing the pain and bleeding (cord colitis, Crohn’s, GVH).
Alek, Grandpa Frank and I will head to Minnesota on Sunday for Alek’s 6 month check-up – it doesn’t seem possible that we are already 6 months post-transplant! He will see his BMT doctor, have an MRI, do updates neuropsych testing, and have many other appointments to make sure he is still heading in a positive direction. We will be there for a full week and thankfully the Ronald McDonald House has space and we have a place to stay!
This week I had the privilege of hearing Amy Remer speak – her message hit home on so many levels! If you have not heard her story, you NEED to! The positivity and joy that she emits is truly inspiring, and reminded me that we get to choose our response to life. I am trying hard to choose joy, joy that comes from the Lord. This is not always easy, in fact many days I want anything but to feel joy, BUT then I look at the gifts I have been given and it becomes a little easier to choose that joy! ?
In the midst of cleaning today (thank you Danae!), I came across a notebook with verses I was memorizing, and this was one of them:
“May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit.”
??Romans? ?15?:?13?
We will continue to place our hope and trust in Him! He alone gives us the strength, the courage, the love, and the joy we need each and every day!
Joshua 1:9