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!

Nana and Papou come to visit

As promised, here is a post about Dad and Kristy coming to visit.

This was taken at the zoo before we headed home.

We didn't do too much while Dad and Kristy were here as Evan was teething (and of course later we found out his levels were off) and was super crabby.  Dad and Kristy were completely fine with that because all they cared was that they got to spend time with Evan.  We did get to take an outing to the zoo which was a lot of fun! Evan really seemed to enjoy watching the monkeys and was definitely more aware of the animals than he has been on past trips to the zoo.


Although Dad and Kristy's visit was short, it was very nice that we had them here and got to spend some time together!

Here are a few pictures from their visit

Nana wanted to sit in the big chair and take a picture with Evan

This was when Papou and Nana first arrived.
 Can you tell Evan is happy to see them?

Papou wanted to be the only one to push the stroller



Papou and Evan couldn't get enough of eachother!

Frustrated!

As usual...life has taken over, so I am sorry I haven't posted for a while. 

My dad and stepmom came to visit last week, but I will save that for another post.

Right now I need to take a moment to let out my frustrations.

It has been 6 months since Evan was born, which also means 6 months of weighing his formula every day, weekly blood tests, weekly weight checks, constant diet changes, worries, and difficult feedings.  Of course there are also good days that are all happy and smiles, but right now I am frustrated.  Is it selfish of me to wish my child were "normal" and didn't have to have these tests every week? Is it selfish of me to wish that I didn't have to worry every time my child didn't want to eat a whole bottle or was extra fussy? I know it could be worse...especially since a former colleague of mine just lost his 16 month old son to leukemia.  That is definitely worse.

What brings on my frustrations right now, you ask? Well...again...Evan's levels are elevated. His numbers are 800. What is most frustrating is that last Monday he was tested...we didn't get results until SATURDAY...5 days later! His numbers were elevated to 500 and the doctor didn't recommend a diet change. I should have gone with my gut and cut Evan off of protein for a day.  Of course I am not the professional so I did as I was told and continued to feed him his protein and MSUD formulas. Then he gets tested this Monday, we get the reults today and he is now at 800...or was on Monday I should say.  The Dr. recommended we lower the amount of leucine we give him by cutting some of his formula.  I feel like it's not enough. I feel like his numbers have obviously been going up for 2 weeks now. Maybe 24 hours without protein would be better. We've done it before.  I just don't understand how the decisions are made! I will definitely be asking for further clarification come Monday when we have our genetics appointment.

It's also frustrating because as a mother you want to protect your child from everything and I am doing my absolute best yet my son still ends up with elevated numbers.  What more can I do? I barely leave the house unless I have to. I fight him to make sure he finishes his bottles so that he stays healthy. I love him and play with him and try to teach him new things every day. But still...it feels like nothing is enough.  It feels like no matter how hard I try he just needs more.  Today was hard. Evan cried...a lot! I thought it was his teeth, seeing as he has two of them coming in.  Then I get the email telling me we need to do a diet change because his numbers are elevated.  Now I don't know...was he screaming because of his teeth or because his leucine levels are too high? Was he fighting the bottle because it hurt his teeth or because his numbers are high?

I HATE MSUD! Yes..HATE! It sucks...it's completely unpredictable and so scary! We are talking to the geneticist on Monday about getting a referral to meet with the transplant team in California. Hopefully we can meet with them soon and get the ball rolling on a "cure" for Evan's MSUD. (At least that's what people in the MSUD transplant community call it). 

If you made it through this post...thank you! Please say an extra prayer tonight for us that Evan's levels drop quickly! I want my happy baby back! :(  And please, say a prayer for angel Micah who was taken from us too soon! I think of him and remind myself that no matter what struggles I am facing with Evan, we are still blessed to have him here. Things can always be worse...even when it doesn't feel like it.