Headed to Stanford

Thanksgiving week was...eventful! Evan had a terrible cough and cold as did I. It, of course, messed with his levels and he was crabby and not wanting to eat. We worked with the geneticist to keep him out of the hospital and successfully got through this cold without a hospital visit! Thank goodness. It took adjustments in his formula as well as him eating smaller bottles every two hours while he was up since he didn't want to eat full bottles every 4 hours.  Luckily he is now back to his happy-go-lucky self and smiling :)  

We had a few friends over or Thanksgiving. It was very nice. Evan slept most of the time they were all here, but it allowed mommy and daddy to enjoy their company and dinner.  Quite a nice holiday! :)

So...now to the title of this post...we are HEADED TO STANFORD!

We leave tomorrow morning for our trip to have Evan evaluated for transplant. It took some work, but we were able to get the AF to pay for all 3 of us to travel instead of just Evan and one parent.  They even bought Evan his own seat so we will have some space for sitting (once we get the airline to recognize that an 8 month old cannot sit alone without his parents). 

Our schedule for the week is as follows, leave for Stanford Tuesday morning, meet with genetics Wednesday morning, and then meet with different parties of the transplant team on Thursday (all day).  We are really looking forward to meeting with all parties to fully understand the ins and outs of transplant as well as the benefits and risks that Evan could face.  This is just the beginning of a long journey, but we are happy for it to be starting.

I will update again when we return from California.

Pieces of a Puzzle

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!

Evaluation Approved!!!

Yes...you read that title right! Evan's transplant evaluation at Stanford has been approved by the insurance! The next step will be on Monday when we meet with outpatient records and EFMP (Exceptional Family Member Program) to arrange for transportation and lodging to be paid for by the military.  We are so blessed to have this as an option.  Once we have that paperwork started, we will schedule our appointment with the team at Stanford. I spoke to the transplant coordinator today (she called because they too got the referral) and she said they have open appointments for the rest of this month besides Thanksgiving and they are open into December. We are shooting for December 1st as we know that the paperwork process will be a little while.  That means that in just a few short weeks we will be on our way to California to have Evan evaluated for a liver transplant. Woot Woot!!! This is the first step on a long journey, but we are looking forward to this and feel it is the best option in treating Evan's MSUD. Please keep us all in your prayers and pray that Evan's evaluation goes well and that afterward TriCare (insurance) will approve the transplant!

Halloween

Evan's first Halloween was a lot of fun! On the Saturday before Halloween we went to our friend's, Josh and Katrina Poe. We barbecued with friends and hung out. It was really nice because it was all friends we had previously been stationed with in GA who are now stationed here. Feels good to be reunited with old friends again! :)  After everyone left, we went with the Poes and their little guy Joseph and trick or treated. Their neighborhood does a big hay ride for all the kids in the neighborhood because the houses are super spread out and up and down a lot of hills. It was so much fun and Evan made the perfect puppy! :)

On Sunday, we went  trick or treating with some friends on base. Unfortunately, I forgot to put the SD card back in the camera so I have no pictures :(  I am glad we got to do both of these things because JR had to work on Monday night and wasn't home for the actual day of Halloween. Sunday was also JR's birthday. We celebrated with Oreo ice cream cake! YUM!