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! :)

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!

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!

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!

Disappointed :(

Not sure why I keep getting my hopes up that we will get out of the hospital any time soon. Evan's adenovirus numbers jumped up again to 600,000. The doctors are not worried as they said this is typical of the virus and that the treatment takes time. The fact that it didn't jump back up over 1 million is a positive. They will do another course of treatment tomorrow and then will retest him on Wednesday with hopes of having him out of the hospital Thursday. All they are looking for is a continued trend in the numbers dropping for us to get him out of the hospital and then he will continue his Cidofivir treatments as an outpatient. I wish I had better news, but right now the good news is that Evan is super playful and acting like himself! :) I'll update again when I can, but for now we are staying in the hospital for a few more days at least.