Home Sweet Home!

Just wanted to let you all know we are home. No one really knows why Evan wasn't eating. It could have been a small virus or he could just not like his MSUD formula. We have started mixing it a bit differently and he is doing better, so I am thinking it's the latter of the two listed possibilities. He could also just be a stubborn kid! Either way, we avoided metabolic crisis by going to the hospital and having Evan put on a feeding tube. It allowed him to get enough nutrition to make sure his body didn't have a negative reaction!

Right now, we are just glad to be home and back to "normal"...whatever that means! LOL

Why won't you just eat?

As some of you know, Evan is back in the hospital. For some odd reason the kid just doesn't want to eat! For most kids, not eating as much isn't such a big deal, but for a kid with MSUD it can be an indication of illness, metabolic crisis, or something even more serious.  Or...it could just be a child acting stubborn!

Here's what is going on with us, around Wednesday August 24, Evan became very fussy with eating. He didn't want to finish bottles and went from 5 ounces to fighting after 3 ounces. We were still able to get him to finish his bottles, but he wasn't eating normally at all. By Thursday night, he refused to take more than two ounces at any given time. Very strange for him.  He was still behaving normal at all other times of the day, but when it came to feedings, he was NOT having it! Fast forward to Friday morning...Evan awoke as usual for his 4 am feeding. He took 3 ounces from his bottle without problem. I stopped, burped him, changed his diaper and went to give him the bottle again. At that point, he vomitted what looked like the entire 3 ounces he had just eaten. For those of you who do not know, vomitting is the nemesis of MSUD. I couldn't take it anymore so I woke up JR and told him that I felt we needed to go to the hospital to have labs drawn and to have the doctors observe him.

We got to the hospital around 5 am, Friday morning.  In the ER they drew labs and Evan's geneticists came in to observe him. Based on his behavior they were pretty sure it wasn't his MSUD acting up, but there really isn't a way to tell until his levels come back...which took until SUNDAY! So frustrating! Evan did not want to eat more than an ounce every few hours if that while in the ER, so they started an IV of D10 which is basically fluids with a high level of sugar to give him calories.  They admitted him and several hours later we were finally up on the general peds unit...and here we still sit!

Evan's levels have all come back normal, so now it's just getting him to eat.  A feeding tube was put in Saturday night and was run on continuous feeds until the next day. On Sunday we went to bottle then bolus feeds to mimic the normal eating pattern during the day and a continuos feed at night. Evan is starting to eat more by bottle than by tube which is a step in the right direction. Hopefully he continues to move in the right direction.

We still have a lot of questions...many of which no one has an answer for. Of course the biggest question is why won't he eat? We may never know and that is soooo frustrating!




Here are a few pictures of Evan during his current stay at the hospital.  

Evan LOVED playing with the activity gym we were able to borrow from the Child Life program.  He would bat at the toys and kick and laugh. (Basically the happiest "sick" kid ever! LOL)



Our friend's Jen and Travis came to bring us lunch and visit with Evan.  Travis had not met Evan as he just returned from a 6 month deployment to Afghanistan. Evan took to him right away and LOVED when Travis put his hat on his head! We are truly blessed to have great friends here! :)



Feeding tube in and still laughing and smiling! :) We are lucky to have such a happy boy!





Cereal!

Evan tried cereal for the first time today!!! He did great! Opened his mouth for the spoon, but of course spit quite a bit of it out. I don't think it's that he didn't like it. I just don't think he knew how to keep it in his mouth and swallow it.  He definitely seemed to enjoy the experience as did mommy and daddy. We will be doing this each night for the next couple weeks until we get the hang of it and are ready to move on to veggies!

So you all understand with Evan's MSUD, adding new foods can be scary! I kept putting off giving him food because I am so concerned about monitoring his protein intake. With close monitoring and discussions with his dietician, we will do great! He is eating "normal" rice Gerber rice cereal. It has 1.1 grams of protein in 1/4 of a cup. Since I am only making 1 Tbsp. right now mixed with his MSUD formula, there really isn't much protein being added to his diet from the cereal.  I have to write down what he eats (just like I have been) and we will continue to have weekly blood tests, but right now, it's more of a learning stage for all of us. Once he is eating enough for the food to be .5 g or more of protein and is eating more during the day we will start to decrease his protein formula and instead he will get his protein from his baby foods. 

We take each new experience and challenge as it comes and just continue to monitor and pray that Evan's protein levels stay where they should! 

Our first Scare!

The day after we returned from the longest road trip ever, we took Evan to get bloodwork done.  He was acting fairly normal. Maybe a little crabby, but we just assumed it was from being stuck in his car seat. Otherwise he was acting normal...eating well and playing and smiling.  A few days later we get a call from his dietician and geneticist that his numbers are extremely elevated. His leucine was up to 1900. For most people, this would equal hospitalization because they would not be eating and would be fairly lethargic.  Since Evan was still eating, there was no need for hospitalization at that time, but we had to do some careful monitoring of his behavior and major adjustments to his diet. We stopped all Enfamil (that's his protein) and only gave him his MSUD formula.  I was worried he wouldn't go for it because he seems to dislike his MSUD formula, but we got lucky and he continued to eat a normal amount of formula and we were able to keep him hydrated and get nutrients into him.  We also had to increase his supplments of isoleucine and valine because as his leucine was dropping, they were dropping even faster.  We did some extra blood tests and luckily his numbers started to drop immediately and were back to normal within a couple of days.  Thank you Jesus for watching over our son!  Any time his levels get elevated, there is a risk for any number of issues to arise including neurological damage and palsies.  We are lucky that it seems at this point Evan is just continuing on as a normal child.

After this scare, we have thought a lot, researched a lot, and prayed a lot and really feel that we need to look further into the option of liver transplantation.  In my research, I came across a support group and spoke with a couple of different families. One is a family who lives in Gurnee, IL where I had my first teaching job and the other happens to be an Air Force family whose son had a liver transplant for MSUD when he was about 9 years old.  He is now 13.  I think this family is going to be a HUGE support for us as they know how to battle with TriCare (our insurance) and the ins and outs of the Air Force.  I spoke to the father for over an hour after he emailed me back and told me we had a lot to talk about and to call any time. They are a loving Christian family with 2 boys. Ryan is their oldest and was diagnosed with MSUD after over 20 days of tests and worries from his family and doctors. At the time, MSUD was not being tested for on newborn screening in all 50 states.  Ryan lived with his MSUD for 9 years before having a liver transplant and in talking to his parents, had they known how different his life would have been with one, they would have done it sooner. However, the information about liver transplants for MSUD was not readily available then as it is now and it was not as common.  They came across their decision after meeting a family whose child had done very well with diet monitoring for her MSUD and then suddenly had a major crisis and ended up in a wheel chair. That family now advocates for liver transplants. That is not what we want for Evan, so we too feel it's important to explore our options to give him the best quality of life that we can! MSUD is scary!

Sorry it's been so long....

Sorry it's been so long since I updated the site. Life has taken over (as usual)!  Anyway...Evan is now 4 and a half months old and doing well!

From July 2-July 17 we were traveling on THE LONGEST ROAD TRIP! Although it was long, it really was not as bad as I thought it could be and Evan did fantastic. First we drove to Destin, Florida for a friend's wedding. On the way, we were able to stop in Gulfport MS to spend a night with our good friend's Tanya and Duane. They were VERY hospitable and served us a wonderful southern style homecooked meal and gave us a comfy bed and a nice place to sleep! Of course the company was great too! Since our visit, Tanya and Duane delivered a beautiful baby girl named August...CONGRATS! We can't wait to meet her...only next time, we won't be driving! LOL

After visiting our friends, we finished our drive and were able to celebrate Independence Day with some wonderful friends from our time at Moody AFB in GA. We are very excited because a few of them will be PCSing to Albuquerque in just a couple of months and we will get to spend more time together and they will get to watch Evan grow!  It was Evan's first Fourth of July, but of course he was asleep during the fireworks. We did take him outside to watch them, but he just slept in his Peapod tent and wasn't fazed a bit by the loud booms. I am glad to say my child can sleep through just about anything.  While in Destin, Evan got to see the beach for the first time and even put his toes in the water and sand. At first he wasn't too excited about the waves hitting his toes, but he warmed up to it and will probably love the ocean just like his Daddy!

On July 9, 2011 our good friends Jon and Christina Jett were married in a gorgeous ceremony on the beach!  We had a wonderful time and were so glad we were able to celebrate in that beautiful moment with them!

The next day, we hit the road again. This time we were headed to Chicago.  We spent a couple days in Chicago visiting with my family and introducing Evan to his Big Fat Greek Family! :) While in Chicago, Evan had the opportunity of meeting all 3 of his living Great Grandparents on my side of the family! I am so blessed to still have my grandparents in my life!

                                         

After our short visit, we went down to Bloomington visit JR's family.  Evan was able to meet all his Aunt's and his 8 cousins! He was definitely spoiled being the only boy and the baby.  It was wonderful to be able to visit and have the closest people in our lives meet our special little guy! He is truly blessed to have you all in his life! :)

The drive home was okay.  Long, but okay! I have to say a HUGE thank you to my husband for the 60 + hours of driving he did on this trip! Love you babe!