College Acceptance

Most people don't pray for college acceptance for their kids until they are about 17 years old or so. However...we are pleased to announce that Evan has been accepted to Stanford University! Okay...so, he's not a student, but he's still been accepted!

Our trip to Lucile Packard Children's hospital at Stanford University was a huge success. Evan did great traveling and we met with the genetics and liver transplant teams. Dr Enns, the geneticist, fully believes that transplant is the way to go when it comes to classic MSUD. He really believes the benefits of transplant outweigh the risks of MSUD.  Especially since MSUD is completely unpredictable.

Our talks with the members of the transplant team were great as well. They were very thorough in helping us to understand the risks and benefits of transplant.  They are confident and knowledgeable all while being friendly and kind. Evan just absolutely fell in love with one of the surgeons. He just snuggled her for a good 20 minutes as we talked with one of the lead surgeons. Her tenderness was exactly what I needed to see to know that this team would take good care of Evan...not as just another patient, but as our baby! 

The transplant coordinator, Marcia, was fantastic. She answered questions and gave us more information than we anticipated. She is going to be our guide through the ins and outs of this process. She will make sure we get them everything they need and she will be the voice we hear on the other end of the phone when we get "The Call!" 

She called yesterday to let us know that the team had presented Evan and made a decision to approve him for transplant! There are still some things that need to be done before he is officially listed. He will need to have an ultrasound done as well as a few more blood tests. He will also be getting his MMR and Chicken pox immunizations on his 9 month birthday (December 19).  Once all of that is done and the insurance approves everything *FINGERS CROSSED* then Evan will be listed. 

Evan will be listed with a PELD score of 30 (40 being highest need). After 30 days with that score, he will be bumped up to Status 1B...which is the second highest category for need. The transplant team has said that once he reaches Status 1B they should get calls for available livers and once they decide a liver is the perfect match we will get "The Call". They don't anticipate the wait being longer than a few months as the longest wait they ever had for a similar situation was about 6 months.  So..for all practical purposes...Evan should have a new liver by the summer! :)

While we were in California, we stopped by the Ronald McDonald house and put our name on the list for housing need. We are really hoping to stay there as it is very close to the hospital, has all the accomodations we need, and because there will be other parents there who (although maybe not going through MSUD related stuff) will understand how we feel and what we are going through.

We have jumped a huge hurdle here with Evan's "college acceptance" and hope that the rest of the process continues to go as smoothly as things have so far.

We love you all and thank you again for your continued support!

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!

Cousin Thomas (and Aunt Terrie and Uncle Tom) Comes to visit

From October 6th-10th we had visitors! We were so happy to have the Wnukowski family come visit and to get the boys together. Thomas and Evan seemed to have a lot of fun together (makes me wish we were closer).  We got to do a lot of fun things while our visitors were here. We went to the zoo, the pumpkin patch, the balloon fiesta (twice), and the KAFB Air Show.  Here are a few pictures from our visit.

Face off!

First Halloween costumes!

  Evan and Aunt Terrie

The Pumpkin Patch

Balloon Fiesta 2011

Air Show...Sitting Under a B52 Bomber

Waiting....

We had an appoitment last Monday with Evan's geneticist, Dr. H.  He said Evan looks fantastic, but his numbers are still high. We are decreasing his protein intake even more.  He is doing well, though.  We also asked Dr. H to contact Stanford for us and to get the referral going for a liver transplant pre-evaulation. He emailed yesterday and said he contacted Stanford and we may be getting a call from their transplant coordinator.  We are nervous and excited all at the same time! We are sure this is the way we want to go, but don't really know what is going to happen. And we know the waiting is going to be difficult once Evan is placed on the list. Either way...we feel this is right for us and for Evan!