Family Photos.....with a toddler! :)

We went to a local park and took family photos this weekend. It was lots of fun.....and stressful! As anyone who has ever been around a toddler for more than 5 minutes can tell you, they don't sit still! Saturday was no exception! Evan wanted nothing to do with the camera and everything to do with the grass, sticks, rocks, and anything else he could get his hands on. Here are a few pictures from our photo shoot for you to enjoy! As you can see, Evan is doing well! Happy as a clam and curious as ever! 

6 months ago

In just 1 week, Evan will be 6 months post transplant! I cannot believe this time has gone so quickly. To think of our lives just 6 months ago brings back so many emotions.

I remember spending my days worrying about whether or not Evan was going to eat and how long each bottle of formula was going to take for him to finish. I would do anything and everything I could to make sure he took his formula. Taking his formula meant staying out of the hospital and preventing potential brain damage as best we could. I spent a lot of my days at home because it was just too hard to stress about him eating and actually go out and do anything. My closest friends can attest to seeing me struggle to force Evan to finish bottles of formula and measured containers of baby food.

Just 6 months ago everything I put into Evan's mouth or offered him to eat was carefully calculated and weighed on a scale. I didn't just offer him a bite of what I was eating...I couldn't. It had the potential to mess up his levels and put him into the hospital and cause brain damage. Just one bite! How scary is that?! And that doesn't include the fear and frustration that day to day stress that could also have messed up his levels. Evan has spent the last week teething. He is cutting his canines and they have really been bothering him! 6 months ago if he was teething I was watching for any potential sign of elevate leucine levels. Now I am doing everything I can to just distract him from the pain so he can have a good day (and so I can have some sense of sanity in my house).

Here we are 6 months later and today we are going to the aquarium and the botanic gardens with friends. I am not worried about whether or not he will eat enough. (Although he is a typical toddler and is super picky with eating. Sometimes I wonder how he grows with the little bits he eats). We still worry about him catching a cold or getting sick as his meds are immunosuppresants. This means he can't fight off viruses and bacteria as well as a "normal" child. We do have that worry, but we also know that viruses and bacteria can be caught quickly and can be cleared with medications or other treatment. Before his transplant, we just hoped and prayed he got through them quickly so that he didn't end up in the hospital and his levels didn't get too out of wack.

6 months ago I also spent much of my days wondering when and if we'd get the call. We were told the wait would be about 3 months but most likely not more than 6. We were almost at the 3 month waiting point. I am still in awe that the doctors were so right about when we would get "the call". Almost 3 months to the day from when Evan was listed we got the call that they had accepted a liver for him. That was the end of one journey and the beginning of another.

People still ask about our decision to transplant and how we feel about that decision. I can honestly, without a doubt, tell you that it was THE BEST decision we could have made for our child! We have protected him from the very scary and negative effects of the VERY unpredictable MSUD! We have given him the most "normal" life we can offer him and he is flourishing because of it! Evan doesn't have a lot of words, but he can tell you just about any animal sound you ask him! :) He runs and climbs! He eats what he wants (if he wants to eat). He is a typical toddler in every sense of the word! I cannot guarantee that I would be saying all of those things if we had not chosen to transplant. I cannot tell you if Evan's brain function would be normal or if he would have gotten sick and lost some of his skills. I cannot tell you if he would have been hospitalized with elevated levels (which he most likely would have been at some point...especially with as much stress as teething has been causing him). For us, and for Evan, transplant was the best decision!

6 months....Sometimes it seems like an eternity ago and others it seems like yesterday! For us, 6 months has been such a time of change! :)

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!