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!

3 Months Old and Father's Day

Evan turned 3 months old today! Wow! time sure has gone quickly! He is doing well and growing and changing every day.  Last week on Monday he weighed 11 pounds and 3 ounces. He has gained 3 pounds since he was born! His MSUD is still being managed very well with his diet and isoleucine and valine supplements. Last week he gave us a scare. He decided he no longer wanted to eat 4 ounces and would sometimes barely want to finish eating 2 ounces.  Of course since refusal to eat can be a sign of metabolic crisis, JR and I were super worried. He was acting normal accept at feeding times.  After a few days I finally called the geneticist and he told us it was normal for babies to change their eating patterns and to not worry as long as he ate his protein bottles (enfamil) and took his supplements.  After another day of him being a pill when it came time to eat I thought it may be the bottle because it was just the bottle he didn't want. I eventually went to the store and bought a NUK brand bottle since the nipple is the same shape as his pacifier. Sure enough...next feeding he took 4 ounces! He has been eating better ever since. Thank goodness I figure something out because I don't know how much longer I could have gone with him fighting the bottle!

Today was also Father's Day! We had a nice relaxing day hanging out at home. Then we went to Olive Garden for a Father's Day lunch. Afterward we stopped by Babies R Us to pick up a few things for Evan.  Evan made Daddy an impression of his feet and painted them green for his father's day present. It's like a decoration for him to hang in his office. Daddy loved it along with the card that Evan got him.  All in all it was a nice relaxing day as a family.

 

We are all doing well. Just getting ready for our vacation to Florida for our friend's wedding and then our trip to Illinois so Evan can meet more of his family. We are all looking forward to getting away for a few days.

Summer is officially here!

Summer has officially hit Albuquerque and it's HOT!  (and smokey. For those of you that don't know, the AZ fires are causing some major smoke here in Abq). Things are going well and we are enjoying the nice weather. Evan, Wrigley and I get out a bit and walk, but only in the morning because it gets too warm later in the day. Evan loves to be outside. It's pretty windy here in Abq, but he seems to like the wind most of the time. 

Evan is doing great! His leucine levels are finally at the normal range (116)!  We have been chasing them up since he was released from the hospital (which is pretty typical of MSUD cases).  We are finally in the normal range. Now we just need them to stay there! We will continue to get weekly blood tests and weight checks so the dietician can help us to adjust his diet each week.  The dietician determines how much protein he should get to keep his leucine levels normal. In addition to his protein formula (Enfamil) she also tells us how much of each of his valine and isoleucine supplements he should get. Obviously it's been working, so we are very happy with that!

Although the doctors have been great, dealing with the insurance has been a nightmare! They are supposed to cover everything...his formula and supplements, and they will, but it's been quite a process to get there! The initial referral was, I guess, not written correctly, so when we went to get Evan's supplements from the pharmacy they wouldn't pay for them. (They will reimburse us, but that's a whole other process).  In speaking to our TriCare case manager, she determined we would have to get our supplements and formula from a healthcare company that could send them to the house and the only one she found that would deliver both was Apria Healthcare. Great...we thought...when they found a company. Of course, then there was a delay because they didn't have these items in their system (since MSUD is so rare) and had to add them which would take at least another 2 weeks.  UGH! More waiting! Luckily, Nutricia (the company that makes Evan's formula) has been AWESOME and have sent us more sample cans as requested by Evan's dietician. They have been so wonderful in making sure we are never without what Evan needs.  Now we have FINALLY starting getting our shipments from Apria, however we have only gotten his supplements.  I called today and the formula was supposed to be delivered to the local branch today. I am supposed to get a call back letting us know when we will have his formula here at home...I am not holding my breath! I call this company almost daily to make sure we are getting what we need. It just goes to remind me that it's true that as a parent we are our children's only advocates. If we don't speak up and fight for them, no one else will! I will ALWAYS fight for my son! So that's my rant about the insurance and healthcare company.  Eventually it will get figured out, but for now it is my biggest frustration. 

Our life in Albuquerqe is going well. I turned 30 a week ago today and we had friends over on Memorial Day to celebrate. It was really great to have friends in the house and to hang out. It reminds me that no matter where the AF takes us, we always have friends!  Speaking of friends, some of our best friends from our time at Moody will be PCSing (permanent change of station for you civilian people out there) here to Albuquerque in the fall. It will be great to have these familiar friends around again! :)

Gary (JR) is doing well too! He is busy with work, as always, but seems to be enjoying it most of the time.   He likes the people he works with and what he does, so that always helps.  He is going to Vegas this week for the Pedro 66 memorial.  (Pedro 66, for those of you who don't know, was the rescue helicopter that went down last year in Afghanistan).   As sad as it will be, he is glad to be able to go and be a part of it and to remember his friends.  Other than work, he has been enjoying grilling since it's summer again and he is back on the four wheeler enjoying the sunny Albuquerque weather. I am hoping to get on the four wheeler a bit this summer since last year I didn't really get to enjoy it being pregnant. 

I think that's about all going on in the lives of the Miller family. We are looking forward to the rest of the summer and traveling to Florida for a friend's wedding and then up to Chicago so family and friends can meet our precious angel, Evan! We will try to see as many of you as we can when we travel to Illinois, but please forgive us if we run out of time. There are lots of you and only 3 of us! Love to you all! :) Hope the beginning of the summer is finding you all as well as it's finding us!

Grandma and Grandpa Miller came for a visit!

Grandma and Grandpa Miller with Evan on top of Sandia

Last week, Grandma and Grandpa Miller drove in for a visit. They stayed from Wednesday until Sunday. It was really nice to have them here and I know they were very excited to meet Evan as we were excited for them to meet him. During their visit, they got to go out to see the helicopters and we took them up to Sandia Peak on the Tram. It was Evan's first trip up to Sandia and on the tram. I carried him around in the baby bjorn and he was cozy as could be! He did GREAT the whole time!

Our little family at the top of the Tramway at Sandia Peak

Since I last posted, Evan has been smiling so much more! He even smiled at me today right before the nurses poked him to draw his blood! :) He is also very aware and constantly looking around. He follows his mobile on his swing and gets upset when it stops. He even rolled over during tummy time on Tuesday (May 10)! It was too funny! I think he scared himself because he started to cry after he rolled to his back.

3 Generations of Miller Boys!

Evan also seems to be starting a schedule for himself where he takes a good 2 hour morning nap and then naps again in the afternoon. Hopefully this is the beginning of a more normal schedule so mommy can anticipate what each day will be like.

At today's weight check, Evan was 4.2 kilos which is about 9 lbs and 3 ounces! He's getting to be a big boy. This weekend I held a friend's baby girl who is 7 lbs 2 ounces (Evan's weight at birth) and it was so strange to feel how light she felt. I can't believe how quickly Evan is growing. Even the nurses commented on how long he looked this morning. He is about 21 inches long now! Our little weed is growing quickly!

First Mother's Day

Yesterday I celebrated my first Mother's Day as a mommy! It was wonderful! It started with a delivery of flowers from Evan (I am sure Daddy had a little hand in that too :) ) I got to relax and hang out with Evan while Daddy vacuummed and did some cleaning! Quite a break for mommy! Then we went to lunch at a local brick oven baked pizza joint. The pizza was yummy, but the salad was even better! Later we had a nice family walk (yes...with Wrigley too)! Finally, we make chicken kabobs for dinner and enjoyed a quiet dinner at home as a little family! :)

Daddy is doing well too! Working lots and going to school. He is taking classes to finish his Community College of the Air Force Associates Degree. He has 2 classes left to go and he will have 3 (I think) associates degrees. Don't ask me in what because I can never remember. He is hoping to continue school while we are stationed here in Albuqeurque and maybe even finish his Bachelor's Degree.

Evan is doing well and learning new things every day! He smiles more and is starting to coo when he plays with his toys. His favorite is still his playmat. He also loves listening to songs and stories and of course swinging. He has learned to like bath time and really enjoys when you pour the warm water over his head.

He's also gotten better hand eye coordination as now he can actually hit the toys hanging above him on his playmat. The first time he did that, he startled himself, but now he seems to do it with purpose. Evan does okay with tummy time, but sometimes he just doesn't want to lay on his tummy. He is getting better and better and lifting his head and shoulders off the ground. He's quite a strong little guy! He also had his 40 day blessing in the Greek Orthodox church last Sunday, May 1st. He was quiet and did great the whole time!


Today we had his weekly appointment and he is now up to 3.95 kilos, which is about 8 lbs 11 oz. They also measured his length and he is 21 inches long. He is eating between 3 and 4 ounces every 3 to 4 hours. He is pretty good at going right back to sleep after he eats at night. Hopefully he stays that way because mommy enjoys getting at least a little bit of sleep!

Evan loving his playmat!