Getting ready...

It's been a crazy week since family left. We have been getting things in order so that when we get "the call" we aren't scrambling to make sure things are taken care of. Bags are almost packed and directions have been given to those who will watch the house and the dog. Sadly...we still don't know which company has been contracted for our transportation. We know it's been approved, but we don't know who it's going to be which makes it difficult to figure out if we are all traveling together or if one parent will have to travel commercially (We are PRAYING that is not the case).

Evan had more labs drawn on Monday and along with that his current weight (8.97 kilo) and height (72.7 cm) have been sent of to Stanford so that his transplant list status can be moved up to 1B this Friday. I can't believe it's been almost a month since Evan was placed on the list for a new liver. Man, the time sure does fly! We are hoping the call won't come too long after the status change. The wait is going to be killer!

We had a tiny glimpse into what it will feel like the moment we get "the call". On Monday morning at 2:45 am our home phone rang. Of course it woke us out of  deep sleep and I jumped when my brain thought of Evan and his transplant. I kept thinking we weren't ready because he's not supposed to be eligible yet because of his immunizations. Once I answered the phone and realized who it was I relaxed for a moment. It was JR's work calling because they had a real world mission and needed him to go into work. An autistic teen had gone missing while hiking with family in White Sands NM.  He had been missing for more than 12 hours at this point and ground and air searches had been unsuccessful to that point. By the time Gary's crew had arrived the teen had been missing for several hours longer. However, an hour and a half into their search, they spotted the boy, who was in remarkably good shape. He was carrying a red sled (for sand sledding on the dunes). That is how they saw him.  Because the boy was in such good shape, they were able to return him to his mother rather than take him to the local hospital.

Here is a picture of the rescue crew and Angelo (the teen they rescued) 

I am so proud of my husband and his crew for a job well done!

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.

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!