Evan's first Christmas!

Evan's first Christmas was a success! Uncle Jimmy (my brother) came to town on Wednesday and we could not have been more excited to have him come to visit us for the holiday! On Friday evening we had a few friends over for dinner to celebrate an early Christmas dinner. Lots of kids and friends so it was a busy holiday house! Absolutely loved it! Christmas eve was calm and uneventful. We went out to dinner and just enjoyed hanging out together. Christmas was nice and relaxing...not something I am used to since I am used to being around lots of people and going to at least 2 different houses to celebrate the holiday.  We opened gifts in the morning. Evan got lots of new toys: a riding/walking car, a ball popper, a ride on train, a wagon, books, a 3 in 1 trike, and lots more! He definitely enjoyed his new toys. As for opening gifts, that was a first for him. He wasn't too excited about it, but once he saw toys underneath the paper he was definitely interested. By the end he seemed to tear the paper a bit more and was more excited to play with each new toy.

My breakfast casserole was a flop :( I guess that's what I get for trying something new on Christmas morning.Oh well...we got a good laugh out of it!

Monday brought on an interesting day. Evan had been fussy and not eating as well for a couple of days, but he was eating. We think he's growing more teeth. By Monday, he was SCREAMING at food (which he loves) and wanted nothing to do with the bottle. We got some cereal and apple sauce into him and only 8 ounces of formula by 4:00 pm. We decided enough was enough and took him to the ER after talking to his geneticist. They admitted us overnight just to watch and make sure Evan wasn't getting sick. After about 5 hours on the IV of D10 (sugars) he was much happier and started to eat better. By the next morning he was back to taking 6 ounce bottles so we were released that afternoon. It's never any fun being in the hospital, but at least we were only there a day and Evan seems to be doing much better now!

Only a few more days and we will ring in the new year! It's crazy to look back on this year and think about the changes in our life and the many things we have learned. It's been an eventful and emotional year, but we are all doing well! We are looking ahead to 2012 and the many things we will encounter. Most likely Evan will have a liver transplant by the middle of the year (if not much sooner) and this, again, will bring on a new way of life for us all. We will no longer be fighting MSUD on a daily basis, but we will be managing on monitoring Evan's liver to make sure that he is not rejecting and is on the right meds. It's amazing to think of how far we have come, but how far we still have to go. As of today we have 21 days until Evan can accept a liver...it is also 21 days until he will be listed at Status 1B which will bring him closer to his new liver and his new lifestyle. We continue to pray each day that he stays healthy and eats well.  With the many feeding issues we have seen over the course of the last nine months, we are praying that we can get him transplanted before he says enough is enough and needs a G tube.  (Not uncommon in children with MSUD who refuse to eat).  We have spoken to families and doctors and know of children who almost immediately following transplant completely change their feeding habits. We are praying this is also the case with Evan as feedings have been one of the biggest challenges that we face.

Oh 2012...what do you hold for us? We pray it's all good! And we pray that all our friends and family have a blessed, happy, and healthy 2012 as well!