Hi Friends!

We had our cardiology appointment on Tuesday and it went very well! Since Colter had been getting synergis every month since December he doesn't exactly like Dr's offices. But he warmed up! Dr. H as always was thrilled with how great Colter is doing. Actually the appointment was kinda boring!!lol! We didn't really have much to talk about! I was kinda fishing for conversation! That's new!! One thing we did discuss was Colter's Sildenifil, and after the ECHO Dr.H said it would be okay for Colter to come off of it. Just a reminder to all of you that since December we've been cutting back his doses in hopes to take him off of it. Dr. H said there's no real way to know for sure if he really needs it or not other than to do a cardiac cath. He did say that there would be indirect signs all of which Colter was not showing. So one more med down! It feels so strange, I feel like I'm forgetting something everyday! At the end of the month we will start cutting back on his Diurell( diuretic). Then after that he'll come off his Captopril (blood pressure/heart failure)! I can't believe he could be med free by his 2nd birthday!!

I have to say that no matter how many sleepless nights, no matter the amount of exhaustion, frustration, and worry. It's worth every moment of it to see him doing so well. He has been such a gift. Even in the hardest times where I couldn't understand why God would do this to an innocent child. He's is such a gift. He's taught us so much about life and ourselves. I heard a beautiful quote, "keep your head up, God gives his hardest battles to his strongest soldiers." Isn't that the truth! What a blessing life is, what a blessing health is! I was also reading about Congenital Heart Defects (as I often do) and found out that only 7,200 or 18 per 10,000 babies are born with a CCHD (Critical Congenital Heart Defect) guess what..Truncus Arteriosus is one of them, go figure! Well the way I look at it, Colter is special in that he's 1 of 18 of 10,000. God doesn't pick just anyone. He chose Colter and our family for a reason. He knew Colter was going to be one heck of a soldier!! As I've said before it is my mission to keep Colter's fight alive, just because he's out of the hospital doesn't mean his or our lives have been easy. It's been A LOT! I don't want people to forget the fight, CHD's don't just go away, it's something Colter will have to deal with for life. That being said, I wanted to let everyone know I raced 2 weekends ago and have another race Saturday. I'm going to call my miles raced "Miles for Colter" So as of Saturday my "Miles for Colter" count will be 6.2 miles. Still waiting to hear from you all! If you all want to wait until August to let me know so you can see how many miles I rack up that's just fine! Will you just email me so I know your interested my email is bobbiejocross@gmail.com :)   Just to refresh you all I was going to do the Puget Sound Heart walk in Oct. but found out the the proceeds actually go to the American Heart Association. Unfortunately pediatric cardiac research only receives 1 penny of each dollar donated. So I thought I could run to raise money and donate ALL of it to Seattle Children's Heart Research Center. Thank you guys so much! Please forward this site to friends and family. We have to keep Colter's fight alive. REMEMBER THE FACTS! CHD's are the #1 Killer of children. Kids are 2x more likely to die of a CHD then ALL forms of childhood cancer, YET pediatric cancer research gets 5X the amount of funding. We need to make CHD's known, Colter and the other heart warriors count on us to spread the word!
Love you and GOD BLESS!

Bobbie

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