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).