3 months and 9 days

Evan is now 3 months and 9 days post liver transplant. His liver function numbers are beautiful, he is eating like most typical toddlers (what and when he wants LOL), and is active and happy as can be! I cannot believe how far he has come in such a short amount of time. There was a time when I could never imagine my child eating even a bite of meat or cheese and today he eats turkey and cheese sandwiches! :) We are so blessed! 

Prayers for other families

I want to ask you to pray for another family of which we have recently learned. Their little girl, Riley, has had her 3rd liver transplant in a month and is still not doing well. Her ammonia levels are high and there is fluid in her belly. She was born with biliary atresia which is one of the most common reasons for liver transplant in young children. Please pray that the doctors can determine why things are not going as they'd expect and that they can get her on the road to recovery. This family has been through so much and they are all fighters.
Here is a link to their story:  https://www.facebook.com/RileyLarson.BAAwareness

I'd also like you to please keep a few names of other families in your prayers. Our friend Amanda Walton is awaiting liver transplant for her MSUD. She is in her 20s and is tired of living with MSUD. She wants some sense of normalcy and has been waiting for a new liver for some time now.

Another friend of ours, Mackenzie is also in need of prayers. She is 13 and has been struggling so much with her MSUD that she has chosen to be listed for liver transplant in Chicago. Her mother and I have talked a lot over the last year or so and I know her mother is also struggling with this. They are definitely ready to get "the call" and move forward to the next stage of their lives..a life without MSUD! 

As always, please continue to pray for all the families and children with MSUD. It's a daily struggle for many of them. 

Been home a month!

I want to start by telling you how blessed we are with the wonderful people we have in our lives here in New Mexico. As most of you know we are far away from our family since JR is active duty Air Force. You would never guess that we didn't have family nearby though. We have an amazing military family who has supported us every step of the way. When we arrived home from California our house was stocked with food for a couple of days and had been cleaned from top to bottom (Thank you, Thank you, Thank you!) Our friends wanted to be sure that the house was clean for Evan and that we didn't need to stress out about getting settled. It made the transition so much easier. Our friend Jen and her daughter were also here to welcome us home! :) So wonderful to have such amazing friends to make life a little easier! This is just what people did for us when we returned home.

There were so many other things done for us on this journey that have truly taught us how blessed we are. We had a friend watch the dog, friends come and check the house, people offered to take up collection for money, money and gift cards were sent to us. Evan received many gifts from friends and family while we were in California. So many, in fact, that we had to mail boxes of things back home when we left California. While in California, we even saw how amazing the military family can be even when you don't personally know people. There is a reserve unit in California whose job is the same as Gary's. A few of the guys from the unit there came to visit and bring us breakfast and offered any support we needed while we were there. It's amazing how small the world feels when you have even the slightest connection with those around you. California really felt like a home away from home for us.

Of course we have also been blessed with a selfless gift from a family who lost a child. I still think of that family daily. They have truly made our lives, especially Evan's, better! :) I still am so thankful for the amazing gift and selfless act this family chose to give during a time of pain in their lives. People have asked if we plan to write a letter to the donor family. I am hoping to do so at some point. Just not sure when I will be ready and when I will have the words to tell this family how grateful we really are for their gift.

Evan is doing very well! Active as ever and learning new things every day. His liver is functioning beautifully and the doctors are very pleased with his progress. He will hopefully be starting swim lessons in a few weeks. Evan's favorite things to do include tormenting the dog, eating cheerios, and watching Mickey Mouse Clubhouse. He also loves to play in water (hence the swim lessons).

Going home!

We received great news today! Evan's virus is either down to very little or zero (the test wasn't conclusive so they will run it again). Either way, we are heading home on Sunday! The team determined that Evan is well enough to go home and that if he needs anymore treatment it can be handled in NM! We are so thrilled to be going home. We now have so much to do to pack and get everything back. We stopped by the Ronald McDonald House today to say farewell to a few of the people we met as well as give them some of the food we won't get to eat since we are leaving. We also donated some of the feeding tube medical supplies we had received and are no longer using.

Almost home....

Evan's biopsy did end up indicating mild rejection. The docs increased his prograf and his numbers have been normalizing ever since. He is continuing to do well. As of yesterday, the doctors are planning to send us home as soon as Evan's adenovirus levels hit zero...which may be now. We are waiting on the results of his blood tests taken Wednesday evening. Hopefully we will have them in the next couple of hours so we can determine what our plan will be to get home. If the results are not at zero yet then we will continue with Cidofivir treatments tomorrow and again Tuesday and hopefully head home by the middle of the week. Either way, we are almost home!

We were able to get a little sightseeing in this past week. On Saturday we went to a park called Happy Hollow. There was a zoo and a small park. Evan got to ride on the dragon train. He loved it! :) On Wednesday we went to the Monterey Bay Aquarium. We had an awesome time! Evan really loved the penguins! A couple of them would swim up close to the glass and interact with the kids. There was also a really fun toddler area where Evan got to play with some plastic fish in the water and some other fun things. He also got to try some new foods. He ate bread and butter, french fries, and even a few bites of my fish at lunch. Oh...and he doesn't have an NG tube anymore! He has been eating pretty well without it. He doesn't like milk, but he does like chocolate milk! He also does well with his pureed baby food. He still struggles with thicker foods and chunks, but we are working on that and he is getting a little better each day. This is probably a result of the fighting him to eat for so long. We will get through this..and if it's one of the biggest obstacles we have left, that's okay by us!

I will update when I know of our return date home! Thanks for the continued prayers. Evan is doing great!

Liver biopsy

Evan has been enjoying his time away from the hospital. We took him to a local park where he loved the swings and the slide. He does not, however, like grass. I guess that is what happens when you live in the desert. Lol! Evan has been back to himself running around and playing with his toys. He has started to eat some things by mouth. He likes pretzels and yogurt. On a different note, the virus that Evan has has decreased from over 1,000,000 down to 3,000. That number is from Tuesday, so it may even be lower now. The sad thing is that because of the virus his anti rejection med levels have been kept very low. His liver numbers have now increased so they did a liver biopsy. We should know the results tomorrow. The doctors believe that the numbers are likely due to the low level of anti-rejection meds which would then mean that his liver is showing signs of rejection. Although that word can be very scary, it is very common for patients to have bouts of rejection in the early months post liver transplant. They are treatable and the liver goes on to function normally after treatment. We were anticipating this possibility so are not completely surprised at this result. More disappointed than anything. We know that Evan will be okay... It's just a matter of time

DISCHARGED!

Evan was officially discharged from the hospital yesterday. The doctors had a discussion about it and decided that there was nothing they could do at the hospital that we couldn't do with outpatient care. Evan will continue to have cidofovir treatments 3 times a week for the virus until it is gone, but at least he gets to sleep at the apartment with us and be with us here every day! So much better than him being stuff in the hospital all day every day.  Our first night went well. Evan slept so much better than he has his entire time in the hospital and woke up cheery and ready to play. Definitely must have something to do with the fact that his vitals weren't taken over night and nobody drew blood from him this morning. We still have a road ahead, but I am grateful that we are all sleeping under one roof now!