Happy Heart Day Gavin!

I can't believe it's been FOUR years since Gavins last open heart surgery. Gavin had to have his chest opened to place a pacemaker after a period of slowed heart rate. Gavin rocked this surgery and we only spent 2 weeks in California! Looking back on this day and thanking God for His many blessings. He has held us through this journey. Gavins fight and determination is shown every time a "stone" is thrown his way. And I can't forget how BLESSED we are with the greatest family and friends that have supported us the last 9 years. Happy Heart Day Gavin!!! We love you!

(This picture is after he was extubated. He gave us a thumbs up and said "I look like the back pew guy." His sweet friend, Paris York, who went to be with Jesus, would always give Gavin a high five after worship.)

“Taste and see that the Lord is good; blessed is the one who takes refuge in him.” Psalm 34:8 NIV

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

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. 

Play Ball!!!!!!!!

Look who passed his stress test today with flying colors!!!!!!!! 

He lasted 11 minutes 30 seconds!!!!! His vitals all stayed within good range. The nurse and Doctor were so pleased with the way Gavin looked and acted when he was done. The last time he almost passed out, looked horrible, and was on the verge of vomiting. It's so reassuring to know that the procedure worked and the coils are doing their job!!!!! Gavin will go back in 3 months for clinic. He screamed, jumped and hugged Dr. O (more than once) when he found out he gets to participate in PE and play baseball this spring!!! Nothing brings me greater joy than seeing my boys happy and healthy. Thanking God for His many blessings. 

Rejoice always, pray continually, give thanks in all circumstances; for this is God’s will for you in Christ Jesus. 

1 Thess. 5:16-18

Thankful

Today was what I consider a good day. We really like the doctor and staff at Cooks. They did a great job at easing our fears and helping us understand more of what is going on. They ran several muscle, strength tests on Brody and then decided to do them on me! We started laughing because the appointment became more about me than Brody. They had Brody and I have a contest to see who could hold their hand in ice water the longest, Brody beat me! Within seconds my hand cramped up. I've always had foot cramps, sometimes legs especially after working out or running. When it's cold out my body tends to tense up pretty bad. I never thought much of it until talking to the doctor today and him checking my relfexes and the ice test. He decided he wants me to go to the adult MDA clinic in Tulsa and have some genetic testing done. He thinks Brody and I have myotonia congenita. 

http://www.mda.org.au/Disorders/Dystrophies/MyotCong.asp

We will know for sure after my tests come back. Myotonia congenita is a form of muscular dystrophy but it is the least severe, does not affect your lifespan. It's very manageable with medication. So if this is the case we will just watch Brody and treat him as need be. We're feeling thankful for good news today and answers!!! Thank you again friends for calling and texting me today. Your encouragement gets us through so much!!! 

Cooks Appointment

Thank you all for the kind words of encouragent, prayers, phone calls, etc. We have been overwhelmed with all the love and support shown to us. We got the phone call from Cooks. Brody will be seen this Wednesday at the MDA Clinic. He will have several tests ran and we're hoping to have more answers by the end of the day! I will update once we know more. Keep praying and believing in healing and restoration for Brodys body! God is faithful, He gives peace, He is good ALL the time! 

Psalm 29:11 says, “The LORD gives strength to his people; the LORD blesses his people with peace.”

You're a Good, Good Father

I got the phone call today from our pediatrician. He went over the labs with me, indicating that Brodys parathyroid, thyroid and RF all came back normal. Brody is a little vitamin D deficient so we will start supplementing for that. Then he went on to say that he talked to our neuro yesterday and he was able to speak to the director at the Muscular Dystrophy Clinic at Cooks. The doctor went on to tell our neuro that they have kids in their clinic with early stages of MD (no muscle weakness yet) but have the elevated enzymes like Brody. Another punch to the gut. So we got a phone call from the referral nurse and she sent all of Brodys labs and paperwork over to them today. We were told who the doctor was that Brody will be seeing (which is the actual MDA director) so I was able to look him up. He seems very knowledgable and specialized in this area. Now to sit down, come up with a list of questions and wait for the call to go to Fort Worth. 

I lost it today, full out lost it. Sat in a parking lot and cried my eyes out. And man did it feel good. I may or may not have punched the steering wheel a couple of times. Only the Lord knows how many people were staring at me. I truly felt better after getting that out of my system. Now it's time to get my big girl pants on and get ready to fight this battle. God has got this. He always does, He always will. He's shown miracle after miracle with both Gavin and Brody. He healed Brodys heart without ANY intervention. He has answered our prayers time and again with Gavin. Believing and trusting it can and will happen again. After I threw a fit in the car, Brodys favorite song (I mean he belts it out loud and ask for me to put on repeat) came on. How's that for saying "be still, I've got this"?! 

"Oh, I've heard a thousand stories of what they think you're like

But I've heard the tender whisper of love in the dead of night

And you tell me that you're pleased

And that I'm never alone

You're a Good, Good Father

It's who you are, it's who you are, it's who you are

And I'm loved by you

It's who I am, it's who I am, it's who I am

Oh, and I've seen many searching for answers far and wide

But I know we're all searching

For answers only you provide

Cause you know just what we need

Before we say a word

You're a Good, Good Father

It's who you are, it's who you are, it's who you are"

-Chris Tomlin