Wednesday, March 23, 2016

Miracles from Heaven

"Miracles are everywhere, Miracles happen everyday." Have you seen the new movie "Miracles from Heaven?" It's a tear jerker, that's for sure. I went with my two grandmothers and my mom last weekend. I had the privilege of sitting next to my sweet, almost 91 year old, grandmother. I cried quite a bit (as did everyone in the theater) during the movie. I went into it not really knowing all the details of the movie. I just love seeing "feel good, godly" movies. I honestly get tired of all the violent, sexual movies that come out these days. Well let me tell you this movie is not all a feel good movie (at least most of it wasn't for me). For me it was very realistic of our life. In one part of the movie it shows the parents pulling a feeding tube out of their daughters nose. It brought back memories of Gavins feeding tube. I will never forget the first time I was by myself and Gavin had pulled it out. I freaked out. I knew I had to put it back and was so scared I would puncture his lung or seriously injure him. Just what we needed another hospital stay and one because of me. So Adam sweetly left work and came home to help me so we could do it together. Another part of the movie showed the parents holding the little girl down in the hospital bed while the medical staff started their procedure on her. I've lost counts of the times we've had to do that. There is nothing worse than watching your child in pain and having their tear filled, scared eyes looking at you like "why are you doing this to me?" This movie just brought up a lot of emotions. My precious grandmother kept squeezing my arm, "are you ok, this is hard, I know, it's to real for all of us." A part of me was starting to regret coming to the movie, but I am glad I stuck it out. Without ruining it for those that want to see... I relate a lot to the mother in the movie. I have had my doubts, my insecurities about Gavins health. But at the same time there have been so many miracles that have happened a long the way. So many things that people don't consider miracles, but they truly are. All things that have given me hope. 

Many ask us what "the future holds for Gavin." I usually laugh in my head and think "well do we honestly know what the future holds for any of us?" Of course, I understand the well meaning questions because we are faced with the reality of his "heart" future. Thirty years ago there was not a lot of hope for kiddos born with Gavins condition. Medical technology advancements have given more kiddos a chance at living a "somewhat normal" life.  A fellow heart parent sent me this link. Things like this are my miracles. They give me hope. 

http://m.gadgets.ndtv.com/science/news/nasa-develops-pump-to-work-for-kids-with-half-a-heart-811678

More advancements coming into play to avoid a heart transplant. Gavins last big open heart procedure was the Fontan. It was the procedure that we were told would buy him time before a heart transplant. The one ventricle could eventually wear out and cause him to need a transplant. And not to mention the many things that (like our recent adventure) could pop up. I absolutely believe that God is the Great Physician, I believe He uses people on earth to come up with amazing things like this to heal sick children. I also believe He heals people without medical intervention. I have seen it with Brodys heart. Just wanted to share with you, if you're going through a struggle right now, try to see the miracles, have hope. 

"You are the God who performs miracles; you display your power among the peoples." Psalm 77:14

Monday, March 7, 2016

Brody & Heart Walk

It's been awhile since I updated on Brody. I had the genetic testing done several weeks ago and got the results on Friday. I do not have the myotonic congenita, which means Brody does not have it. In the meantime I had to call Cooks about Brody. He ran a random high fever for a couple of days with no symptoms, except for occasional arm and leg pain. All new symptoms. And of course his stomach issues are becoming more frequent again. I called pediatrician and they advised me to let Cooks know. They went ahead and started Brody on a medicine that is used more commonly for seizures but also helps muscle cramps. Cooks called back today and the next step is run a new panel for myotonic dystrophy. Please continue to pray as we run more tests and try to figure out what is going on! 

Gavin continues to do great. Of course he's still tired and goes to bed before 7 most nights! We're trying to ease him into being more active again, especially with baseball coming up!!
 
(Passed out on his great-grandparents couch) He's super pumped about starting baseball this month! We can't wait to cheer him and the Bulldogs on!

The heart walk is coming up!! Mark your calendar for Saturday (morning), April 23rd! We will have our usual meet up place for pictures. I will post more details as we get closer. We're in the process of getting a shirt order link for people to be able to purchase Team Gavin shirts. So be on the look out!

And one more request for all our sweet prayer warriors. My cousins son is having open heart surgery tomorrow in St. Louis. If you all could lift up little Hudson, his parents, the medical staff, and extended family. It's been a crazy journey in our family with a couple of the boys having heart issues. It's been a great support system but I hate so much that they're having to go through this. At the same time I can't wait to see the bond between Gavin and Hudson, and their incredible testimonies they'll be able to share one day.