Today the pieces are starting to fit and come together. I am starting to see the whole picture beyond right now and into tomorrow, next week, next month, and even next year! Our appointment is scheduled! We will be meeting with the liver transplant team at Stanford on December 1st! That's only a few weeks away! We are excited and anxious, but ready to start this stage of the journey and to put together more pieces of this puzzle.
One of the pieces of the puzzle that we gained today was insight into a family's view of liver transplant at Stanford. I spoke to a mother whose son was also born with MSUD. He was transplanted at just 6 months old! He is now 2 and a half and is doing very well. This mom gave me all the assurance I needed to know that Stanford has a great team and that we are blessed to have the opportunity to work with them and to have them care for Evan. She gave me peace in knowing that the decision we are making for our son is worth all the risks and challenges. Talking to families who have walked in our shoes gives me the comfort of knowing we are NOT alone and no matter what we will NEVER be alone on this journey! Once again...the members of the MSUD community are incredible! I am so thankful for all of the pieces to this puzzle that everyone has been able to provide.
Right now our life really is a bunch of puzzle pieces. We are learning how everything fits together and how everything connects. As we move forward, all the pieces will fall into place!
I am so glad you were able to get some reassurance!
ReplyDelete