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!
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! 
