Update... May 13th, 2013

I feel like we are sailing.  We have days that are smooth sailing and then swoosh! We hit a storm, and we are thrashed back and forth.  Carter is no longer dealing with pain issues, but he just wants to get up.  He has been laying in the bed, flat on his back, with minimal movement for 7 weeks now.  He has had enough!  Carter has started to get silly.  He usually wakes up and starts dancing, which leads to wiggling his booty and kicking his legs.  It will last a few hours and then he decides its time to get up.  Then, he gets mad that he cannot get up.  Carter’s Urologist and Orthopedic Doctor are discussing a few different options to continue to keep Carter still.  There are no other medications we can use without putting him on a ventilator, and with the recent history of Aspiration Pneumonia they do not want to complicate things further.  All off the Doctor’s are amazed that Carter has been able to breathe just fine with all of the medications he is currently receiving.  He should be in a coma, yet at times he is wide awake.  The medications that require him to stay in the PICU have not been very effective for Carter.  Everyone keeps telling us how strong he is.  Most children do not have much head control after this surgery because they lay flat on their back for so long.  Today, Carter decided he was going to sit up, and he had no problem holding his head up. He nearly sat up.  Everyone has been amazed.  We are so happy he is so strong and we know this is one of the reasons he has survived thus far.  Unfortunately, right now is not the time we need him to be so strong.  We need him to lay flat and still in the bed.  We are praying they will come up with a plan today.  Carter still has a LONG way to go, but we know he will get there.  

I have been asked the same question by so many people that I wanted blog and share my response.  I frequently get asked if I regret sharing about Carter’s condition or how we plan on explaining that he is different from other children.  I also get e-mails from other families asking how I feel about sharing Carter’s condition.  Well here is my response…

God made Carter for a purpose.  He did not make him to be hidden from the world.  He did not make him different.  He made him special.  He made him perfect. How could I ever try to “hide” Carter’s condition and expect him to not feel ashamed of himself?  Each part of Carter’s body was mended together by God’s hands.  Does his belly look different than most peoples? Well, yes, it does.  He has a feeding tube and an ostomy and a TON of scars or as I like to call them “superhero marks."  Most people are surprised when I tell them that Carter already knows his stomach is different than his friends. Different from mine and Brandon’s.  He already pulls up his friends’ shirts and looks for their ostomy bags.  He looks at mine and Brandon’s stomachs all of the time, and then he looks at his.  Yes, it is different, but it does not mean there is anything wrong with the way he looks.  It is the way God made him, and we are proud of the way he looks.  He is absolutely beautiful!  Lets face it. Kids can be mean.  I know there will be the day in Middle School or even sooner that someone is ugly to him.  My hope is that he does not let it bother him and that he stands up for himself.  God made Carter the way he is.  My goal is that he will always remember this, and no matter what, he will embrace how he was made.  I hope as a parent I can instill a strong enough influence for him to always be strong in his faith and know that God made him just the way he is.  I feel like God is looking down and watching his plan unfold and Carter is just an instrument.  It is my job to make sure Carter knows he is God’s instrument and to understand that there is purpose for all of his pain.  When the day comes and I am looking God in the face I want him to say good job.  You served me well.

For you created my inmost being; you knit me together in my mother's womb. Psalm 139:13

Carter gave me an early Mother's Day gift on Saturday!  His smile was better than anything money could buy!  He also made me a handprint card and gave me some flowers (which were against PICU rules and we had to get rid of them)

Tomorrow, Brandon and I will be married 8 years!!!  It is hard to believe it that has been that long.  On our 5 year wedding anniversary we went to find out the sex of our sweet baby. Instead, we found out Carter would be born with multiple birth defects.  It is a day and anniversary we will never forget!  To read more about it click here!

Happy Anniversary Brandon!  I love you!! Unfortunately, I have NO Wedding pictures saved on our computer.  So here are a few photos of our last 8 years.