15 months post transplant...Evan is 27 months old!

This picture perfectly represents where we are today! Evan is a 27 month old picky toddler! He has tried and true foods he will typically eat (pizza has newly been added to that list). This picture was taken after a great morning at the pool where Evan played, "swam", and enjoyed life while we sat back and watched. We would not be where we are today if it weren't for Evan's donor family and his new liver!

Speaking of his new liver, it is working beautifully! We recently had to tweak his prograf a tiny bit, but his liver is happy as is he! We spend our days going to the library, swimming at the pool, playing at the park, exploring the local museums, bowling, or making friends. We are LIVING and LOVING life! :)

MSUD seems like such a distant memory in so many ways, but it will never be forgotten. We still promote awareness and support other families effected by this nasty disease.What's wonderful, though, is that it no longer controls our life. Yes, the transplant was trading one issue for another, but for us liver transplant has been a great option. We are still cautious and have to monitor Evan's liver levels closely, but day to day our life is amazing!

If you are finding this page as a new family effected by MSUD, please know that there is hope.

Life is good!

This morning while tickling Evan an listening to the most amazing sound, his laughter, I couldn't help but think about how amazing life is! I have a wonderful husband who loves his family and does everything he can to care for us. I have wonderful family members who, no matter how far away, support us any way they can. I have great friends who can make me laugh even on my worst days. And of course I have an adorable healthy little boy who gets to enjoy life!

I can imagine what life would be like if we had not chosen transplant for Evan at such a young age. While I know we could have done it and managed his MSUD as best we could, I can't say it would have been easy. By now I can imagine Evan would have had a g tube placed because he hated his formula so much. Our days would be dictated by a schedule around feeding a of formula and strict food measurements. I know that between each blood draw I would live in immeasurable fear that the Evan we know could be taken from us at any moment by illness or stress. That stress is different now as I don't live each day in that fear.

It's not to say that having a child who has had a transplant is easy, but for us it's easier. He only takes medications twice a day. The rest of the day is ours as we please. Like any normal toddler, he picks and chooses what he will and won't eat ad how much of it he will eat. I still stress about food, but not because I'm afraid it will make him sick if he does or doesn't eat something. I stress because I am a mom and I want to make sure my little boy is eating enough and getting the necessary things. It's what I call "normal" fear and stress of parenthood.

I do still stress about lab draws and worry about his health, but it's so different and it doesn't consume my every thought. I don't know what it's like to have a "healthy" child, but I can tell you this feels much more "normal" than things were before! I LOVE being a mommy! I LOVE watching my son learn, play, and explore!

Each day I am thankful for this gift of "normalcy" and LIFE that was given to us by Evan's donor! I hope the family some day will understand that their amazing gift in a time of such grief has given us so much life!

6 weeks and 3 days

6 weeks and 3 days from now Evan will officially be 1 year post liver transplant! I cannot believe it has almost been a year! We have been so blessed that Evan's health has been good. Aside from one hospitalization for a tummy bug and now him having the flu (at home) things have been great. Both the tummy bug and flu are "normal" kid issues. It seems so surreal to think of any health issue as "normal", but as we all know, kids get sick. It's just a part of life. Evan's immune system seems to be working well and fighting off these illnesses on their own without any special interventions. It's great to see that Evan can catch a cold and handle it just like a healthy child would. He is only taking two medications now... A low dose of prograf and a supplement of magnesium. His liver functions have been good.

Evan is a typical toddler... He is a lucky eater! Mostly he prefers crunchy foods or breaded/fried foods. Who doesn't, right? He is in gymnastics and while he can be hesitant to try some things he has so much fun! He loves to read books and especially likes playing with cars! He knows some of his letters and some of his colors. He is saying new words every day! He also loves dinosaurs! :) We love going to the zoo or the aquarium. He just loves seeing animals!

It's amazing how much has change in this last year. Our stress level seems to be lower and lower as time passes and Evan continues to do well. We cannot be more pleased with our choice to have Evan's liver transplant done when we did. He has just flourished!

What a fun weekend!

We had tons of fun this weekend! Friday we had a wonderful thanksgiving lunch at the squadron. It is always nice to feel welcomed and a part of the squadron. Plus... Getting Thanksgiving dinner twice is great!

That afternoon Evan and I also went to a play date at a friend's house, which is always tons of fun!

Saturday evening we went to a friend's house to watch the UFC fights. Our friends have a little girl about Evan's age and they always have tons of fun together. They come to story time with us at the library each week, so the kids know each other well. Last night when we left, Evan and his friend were so sad to be separated that they both cried! Broke our hearts, but was also heartwarming to see that they really love each other!

Today we went to a birthday party for another friend's daughter so is turning three. We went to a place called Albuquerque Jump which is a bunch of indoor jump houses and bouncy slides. The last time we went, Evan did not like te bounce castles and wanted nothing to do with them. Today was the total opposite. He LOVED jumping! It was so fun to see him jump and play with his friends! :)

A day in the life...

Life has been so much more "normal" lately. A typical day consists of enjoying Evan by going to story time, the park, the zoo, or just having fun at home. We get out as much as we can. Yesterday we ran errands, went to music and movement class at the library and the park. It's so nice to be able to enjoy being a mommy rather than spending my days strain per every little thing! It doesn't mean I don't worry or stress about things. It's just a lot less than before!

The tables have turned...

Evan is now 7 and a half months post transplant and doing well. We have had little bumps, but nothing that couldn't be handled fairly easily. Evan's amino acids are good and his liver functions are beautiful! The stresses we have now are nothing like the stresses we had pre-transplant. We still stress about Evan eating, but that's because he is a picky toddler and it drives us crazy! When the stress of him not wanting to eat lunch is just too much we don't have to fight him and make him eat like we did before transplant. He doesn't have to take "x amount of formula" and "x amount of protein" to stay healthy. Now he takes his meds twice a day and eats what and when he wants to (at least what we are willing to offer him). It's amazing to look back on what days were like before and see how different they are now. We are so blessed and have come so far in Evan's 19 month life! :)

Now to the title of this post...the tables have turned...

Instead of me calling, emailing, or facebook messaging families asking for support and help with managing Evan's MSUD and the stress... I am the one receiving phone calls. I have spoken with many families who are  just learning to manage their children's MSUD or some who have been doing so for longer than Evan has been alive. One family has a young child who is very similar to Evan in that the child is already refusing to drink the formula even when amino acid levels are normal. By sharing our experience with this family, I am hoping they realize they are not alone and that there is a possible answer (this family would like to pursue liver transplant from what they have said). There is another family who used to help me because their child is older than Evan. The mother would listen when I was frustrated and struggling to get Evan to eat. She was there to listen when Evan's levels were elevated or when he was in the hospital. Now she is pursuing liver transplant for her child and I am there for her. I have explained to her the process we went through, the transplant experience, the recovery, and what our life is like now. I feel like I am paying forward what other people did for us when we were struggling to manage Evan's MSUD. It's a good feeling, but at the same time there is a level of sadness I feel for these families. I hate that they are going through this struggle. It's not something I would wish on my worst enemy. But, I am thankful that I am able to offer them some support and I hope that they feel like they have hope! I pray daily for all those effected by MSUD that they stay healthy and persevere in managing this ugly disease.

If you are reading this because you have a child with MSUD and are looking for help, please don't hesitate to contact me or ask for help. There is a FB page for families with MSUD. That's how I found my support! Remember, you are not alone!

Evan in Action

A couple of videos of Evan in action!