He Is a Normal Little Boy Trapped In a Not So Normal Body...

I first want to start by saying a BIG thank you to everyone who ran or walked for "Team Carter" today in the rain!  We, along with everyone at Blair E. Batson, say "Thank you!"  Today, Carter has started back on formula through his J-tube, he has vomited a couple of times since starting the feeds.  His g-tube, which allows the J-tube to vent, has had a dramatic increase in fluid.  I am trying to stay optimistic that he will be able to tolerate his feedings now that we are irrigating his bowels, but i'm just not sure that he will.  We are irrigating Carter's bowels every four hours, meaning we remove all of his stool for him.  Kinda gross I know, but hey whatever works!  This is only a temporary fix, until they can figure out all that is going on with Carter's bowels. The incision that was infected a few weeks ago looks like it is trying to get infected again, so we are keeping a close eye on it.  Hopefully, Carter will tolerate the feedings and we can turn his TPN and lipids down.  The biopsy results should be back sometime this next week. We hope they will give us more insight into what's going on with Carter's intestines.

I have had so many questions about Carter lately, regarding not only his neurological status, but his birth defects.  I felt I should describe his condition a little more.  Carter was born with his intestines, part of his liver and bladder on the outside of his body.  He was born with an imperforated anus and spinal defects.  His intestines and liver were placed back inside his body.  He had an ostomy made and eventually his spinal defects were repaired.  He is still living with his bladder on the outside of his body and will until we figure out all of his intestinal issues.  He's kind of a miracle, if you can't tell! :)  Neurologically Carter is perfectly fine.  He is a normal 17 month old little boy.  He loves to throw things, be thrown around and do all little boy things.  He is a normal little boy trapped in a not so normal body.  I think him being neurologically normal has made all of this a little harder.  Carter will continue to have surgeries throughout childhood and into adulthood. We hope to get the majority of them over with while he is young.  As hard as it is to say it, this will be a life long battle for Carter.  If you saw Carter today without all of the tubes attached to him, you would never know there was anything wrong with him.  He is very intelligent.  To Brandon and I he is perfectly normal.

I have also had a lot of questions about our life because I guess basically living in the hospital is not normal for everyone.  Monday will mark 5 weeks of this hospital admission, not all in the same hospital, but 5 weeks of being in the hospital without going home.  We have been back and forth from home and the hospital for the past 5 months. I think we have adjusted well.  We do miss our poor dogs, but we know that we are right where Carter needs to be.  We were very fortunate this time, knowing that we were going to have an extended stay they have moved us into the "Presidential Suite".  The room is about two times larger than the last room, Carter has a play mat he can get down on and crawl and it has a bathtub.  Carter's favorite part of the day is bath time. After cleaning the tub multiple times, he gets to take a bath.  This has made a huge difference and it has made him feel more at home.  Carter was able to be disconnected from the monitor a few days ago, so he can now go on wagon rides.  Another one of his favorites!  We strive knowing that we will one day be taking home a much healthier little boy, even if it means living out of a suitcase and sleeping on a not so comfortable bed. He has a plan for him and we are just ridding along watching it unfold.

Before leaving Jackson, I did an interview with a local radio station to benefit Blair E. Batson.  I answered many questions and talked a lot about our multiple stays until the last question.  I was asked "What is your overall goal for Carter?"  I was honestly stumped and didn't really answer the question.  I guess I have been so caught up on making it day to day that I have not thought much about the future.  It really bothered me that I was unable to answer the question, and I have since thought about my goal in life for Carter.  My overall goal for Carter is to be a light to Heaven. To be the kind of person that others can see Jesus in, to be a tool of God's in leading others to know Him.

His life is not always going to be what everyone else considers normal. I hope that he will always fall back on his relationship with the One who created him.  So, Carter in 10 years when your reading this I want you to know that God created you just like you are for a reason and no matter what anyone else here on earth tells you. Know that God created you perfect. Just like He wanted you!  The body you have now is only temporary, and you will one day have a new body.  He loves you and you have a big purpose here on earth... just as you are!

Carter's sweet friend Lily, who also has OEIS Complex sent him flowers and some treats!  It was so sweet of her and they have made our room smell so good!  Here is a link to her blog www.andrusfamilyadventures.blogspot.com.

Here are a few pictures of our home away from home...

 Carter on his mat.. throwing toys!!

 The wagon and our rocker.

Carter's mat with daddy's bed behind him.