Thankful Thursday

It's been a difficult couple of weeks. A few weeks ago Evan's bilirubin levels began going up. They rose to slightly above the normal range, but for Evan even that is unusual. We repeated labs only to find that Evan's bilirubin was continuing to rise. The biggest concern was that the elevated bilirubin could be a result of a blockage and would require surgery to clear.

The doctor scheduled an ultrasound. We were blessed to again have the same ultrasound tech who has done all of Evan's ultrasounds here in Albuquerque. She is sweet and patient and knows how row irk with Evan! It's always nice to have a familiar face when in a time of worry. 

Luckily the results came back perfect as showed no concern of blockage. The following week we repeated labs and Evan's bilirubin levels were trending down and his liver function tests were even better than they had been! We will repeat labs again in a few weeks, but with a beautiful ultrasound and labs trending back down it looks like Evan's bilirubin was probably elevated due to a virus or something "normal". We are thankful that Evan is healthy and enjoying life. 

On the other side of life, things have been hard. My great aunt passed away. Although she lived a full life it is always difficult to deal with death. It brings back the reality that my grandparents are getting older and that I don't know how much longer we will have them. I am jus thankful that Evan has had an opportunity to meet them all! 

Then came this Monday when there was a helicopter crash in Okinawa. The crew were all co workers of my husband, but we still don't know who specifically since there has been a delay in releasing that information. It's always difficult when there is an incident like this in the rescue community. Even more so when someone dies. Unfortunately, one of crew members did not make it out of the helicopter and died in the crash. It brings up a lot of questions and concerns. This was only a training mission. You like to think that the danger lies only when they are in front of the enemy, but that's not true. The reality of the dangers of the job are always in the back of our minds, but at a time like this the thought is brought back to the forefront. It is a sad time in the rescue community, but it is also a reminder to never take a moment for grated. Hug a little tighter, kiss a little longer, and just enjoy every moment because you never know when it will be your last. I am thankful for every moment we have as a family! 

This is a post from August 8 which was never published, but should have been. 

Wonderful Wednesday!

Today is a wonderful Wednesday! The day started off with a blood draw followed by a play date with Evan's best friend, Emily! Those two just love spending time together and ask about each other all the time. Of course it's also wonderful that I am good friends with Emily's mom as well. :) It makes for a wonderful time for moms and kids to have a play date where everyone enjoys being together!

What makes today even more wonderful, though, is that Evan's labs look beautiful! We had a little scare about a month ago when Evan's bilirubin levels came back elevated two lab draws in a row. The doctor ordered an ultrasound to check and make sure that the bilirubin was flowing correctly. Shortly after the ultrasound we learned that the ultrasound looked perfect and Evan's bilirubin was going back down.

Today's labs so PERFECT labs! :) All numbers are well within the normal range and Evan's liver is happy! :) Evan is currently 17 months post transplant and has only had 1 inpatient stay at the hospital since transplant. We've had a few visits to urgent care of the ER, but all turned out to be "normal kid stuff" like ear infections. Even his 1 inpatient visit was just a virus, but needed close monitoring to make sure his prograf level stayed down and his liver stayed happy.

Evan is one blessed little boy and we are thankful every day for his donor and donor family! :)

Independence Day

We celebrated Independence Day with Grandma and Grandpa Miller and some friends at the Freedom Fourth Festival here in Albuquerque. It was so fun to watch Evan and his best friend, Emily play. It's amazing how at ease they are together and we are with her family. The kids loved playing with glow sticks, dancing, and just running around. It rained just as fireworks were starting so we didn't get to stick around to see the fireworks together, but we saw them on the way to the car and had the best parking spot to continue watching them. It was a beautiful night! :) 

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! :)