Wednesday, February 3, 2016

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!!! 

Monday, February 1, 2016

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.”

Wednesday, January 27, 2016

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

Monday, January 25, 2016

Brody Update

Brody had his appointment today with the neurologist. Thanks to my mama for going with me!! We don't have any definitive answers, but after observation and going over labs, it has been decided that Brody will go to Cooks in Fort Worth for further testing. This afternoon we went back to the pediatrician for more labs and he too agreed with sending Brody to Cooks. We should get lab results Wednesday while we wait for the referral phone call. 


It was an exhausting day for this guy. He must have been super tired because this kid doesn't nap! 

 
Adams been out of town (for work) for 8 days, 5 more to go. My ever supporting parents kept the boys Friday night so I could go to dinner with Club Med. If you don't know about Club Med, check out my sweet friend, Julie's blog. http://pearlsandjulesofwisdom.blogspot.com/2016/01/club-med_21.html?m=1  
I havent laughed that hard in who knows when. These mamas are some tough ladies and can actually say "I know, I've been there and then some." We shut the restaurant down, looking forward to our next get together. 

Tonight, my sweet daddy brought me the BIGGEST Andys custard. He knew just what my heart and tummy needed! 


Ignore the lovely face I am making but I just want to give a shout out to my precious granny. She has been a HUGE help to me while Adams gone. Between appointments, homework and keeping me busy to keep my mind from wandering, she is the best. She even got me walking with her and her fabulous friends at the mall in the mornings! 


Thank you all for the continued prayers for our boys. We're blessed. God is good ALL the time!

“But you, Lord, are a shield around me, my glory, the One who lifts my head high.” Psalm 3:3 NIV

Saturday, January 23, 2016

Brothers

We received a phone call last week to schedule Gavins treadmill test. He'll go February 16th to OKC for a treadmill/echo. We're praying for good results and receiving confirmation that the coils are working for Gavin. Gavin had a pacemaker home check yesterday. We should get results on that next week. 
Gavin is loving being back at school. He received a shout out at school on Friday during their Friday Finale assembly. Shout outs are for displays of godly character. Gavin gave away 2 of his baseball cards and didn't ask for anything in return. His sweet friend Allie appreciated the gesture so much she turned him in for a shoutout! Love how their school recognizes children for their character. It came at the perfect time considering Gavin is struggling with not knowing whether he will be able to do baseball this spring. Gavin is trying out for honor choir on Monday so hopefully that will give him another distraction! 


I was changing out pictures yesterday and got sentimental seeing how much the boys have grown! I love these brothers and their special bond. They love to be together, get into trouble together and do the normal brother stuff. They also truly know how to lift each other up when they're going through a tough time. Which brings up something I want to share with you all. I haven't told many about Brodys health scare because we honestly thought this was just a stomach bug that put havoc on his body. But we've received some scary news recently and we're just requesting prayers for him. I want to be honest, because I am far from a perfect person, I have struggled a lot recently. In the last 2 weeks I have had some breakdowns. A couple of my girl friends and Gavins neurologist can confirm it. ;-) I think I have been in denial about Brody because I thought, no way, people will think we're crazy that both our children have serious medical issues. Some of you know Brody had two holes in his heart at birth but they closed before his first birthday. We were heart broken thinking both our sons would endure open heart surgery. We did think a lot, what did we do? Did I skip a prenatal vitamin? Did I drink caffeine? Did I not eat healthy enough? Is it a faulty gene we passed on to our boys? A lot of blame on myself thinking I did something that caused my boys to have heart defects. Since Brodys holes closed and he was released from cardiology, he's had a pretty healthy childhood.
 
That was until December 2014, he got what we thought was a horrible stomach bug.


X-ray and CT scan showed some alarming issues that got him hospitalized. They thought he had an obstruction in his stomach. This was the first time he had vomitted in his life. He vomitted and had diarrhea for a couple of weeks. He was so sick. The doctors chalked it up to a bad stomach bug and we let it run its course. After that Brody wasn't the same. He would get bad stomach cramps, diarrhea, constipation, bloody stools. Most of 2015 we spent running tests with the GI and a liver specialist in OKC. After an upper and lower scope, ultrasound and lab work we came back with some answers. Brodys liver was in the upper limits of normal (so slightly enlarged), he had sludge in his gallbladder. The scope and biopsies came back normal, so we were thankful for that! The most puzzling issue has been his blood work. His liver enzymes have been elevated, then normal, then elevated, then slightly elevated, etc. Another test showed that he did have some type of inflammation in his body but not certain where. The most recent lab tests (which we received over the phone while Gavin was being re-admitted post heart procedure) came back very alarming. Brodys creatine kinase was extremely elevated for his age. So when we got back from Kansas City we started the process of more labs and figuring out the right specialist for him to see. After more labs, the CK was still elevated and higher than before. So Friday I spent the day on the phone with doctors making a plan for Brody. We will go Monday to the neurologist (which is Gavins neurologist who we ADORE) for more tests. The main concern for Brody because of these tests is muscular dystrophy. We've been told there are multiple forms of MD and can range in severity. Brody has not been symptomatic for MD so we feel encouraged by that! At the same time, we feel like we've been punched in the gut. You all know, we're believers, we will always trust Gods plans for our life. But we struggle too, we're not perfect and I don't ever want it to come across that way. Please pray for peace, no matter the outcome. Of course pray for Brody and for the doctors to have wisdom and understanding on what is going on in his little body. 

(He's had so much lab work over the last year he's learned to just smile through it!) 

Friday, January 15, 2016

Post Procedure Appointment

So many of you text or called yesterday to see how Gavins appointment went, thank you for that! I am just getting around to making a post because our sweet OKC friends who are more like family, surprised us last night with a "Welcome home Gavin, Happy Birthday Faith party!" I am sad I didn't get a picture of the group but we were just having to much fun! They are an incredible group of people that have gone ABOVE and beyond to help ease the burdens. Thank you friends for a wonderful night!! 


Yesterday Gavin had his post procedure appointment at OU Childrens. We had a nice talk with Dr. O about what to expect. He felt good that Gavin was feeling so great after his procedure. We talked about how bad the pressures were in Gavins heart and the unusual situation he had going on. We ended up having conversations with the other cardiologists and the PA. They were all amazed with what Gavin has been going through. He's really made the medical books with his heart. Gavin had an echo and it showed there was still a little bit of flow into the ventricle. Our hope is that the area continues to clot off (with the coils) and Gavin will not need any more coils placed.
 

As far as activity level goes, Gavin gets to participate in light recess, but hold off on PE for now. Gavin has PE and recess everyday so we need to limit his excerise. The BIG question for Gavin was "do I get to play baseball?!" Well we don't know yet. Sign ups are next week so we will definitely get him signed up just in case. We have to come back in a couple of weeks to do another treadmill/stress test and get a 24 hour holter monitor. Gavin has to pass those tests for the doctors to allow him to play baseball. It's hard explaining to a little boy that it's ok to take a year off and get better so you can play next year. It's truly devastating to him to think he may not get to play. I think that is our biggest obstacle right now. Gavin wanting to feel like "a normal boy." He had a rough night the other night, got emotional about his future in sports. But we try to remind him what is most important is his character, especially who he is in Christ. Some of favorite qualities about Gavin are his determination and competitive spirit. Those two qualities help him to be a fighter when things are tough. But they also back fire and get him down when he thinks he won't be able to achieve a goal. Pray for him as we go through the next couple of weeks, and all the unknowns for him. Pray for his peace, whatever the outcome. 

Friday, January 8, 2016

Going Home

We're getting discharged to HOME! Everything checked out fine yesterday. Gavin had one more headache last night but it went away with Tylenol (unlike the first big one). All the neurological tests came back normal. Gavins blood pressure was normal by last night. His pupils are more normal this morning. Doctors gave us option to stay another night but we're ready to get home to Brody!!! They think that it was a combination of dehydration (from all the sleeping Gavin was doing) plus his body adjusting to the new heart changes. We're going to take things slower and not rush to being active. Gavin probably over did it walking and moving as much as he did yesterday morning. So we took a wagon out of the heart unit this time! 
I want to give out some shout outs....
Thank you to Jack and Angela Hudkins for bringing us lunch on the day of surgery. So sweet of you two! Thank you to our wonderful family, Grandpa Joe, Nana, Papa Ron, Great Granny, Suzanne, Nancy and Shandi for making the trip and helping us out so much!!! Thank you to Uncle Kyle and Aunt Kiki for keeping Brody and making sure he was well taken care of! Thank you to our awesome neighbors, The Klaus Family for getting our mail, doing house stuff, trash and taking Brody to school everyday, you all are the best! Thank you to the Montgomery's, Browns, & Maternas for sending an awesome game and snack package to Gavin! Thank you to Suzanne and Granny for keeping Brody last night and getting him to school today.
Thank you to Daddy's co-workers for the sweet get well sign and for being so understanding of Gavins situation.
Thank you to Gavins LOVING, precious classmates for the hilarious, thoughtful video they sent him. He's watched it over and over. Mrs. Gable and the ENTIRE third grade class at LCS ROCKS!!! Thank you to Papa and Mimi for the KC hat that all the medical staff signed for Gavin! What a neat keepsake!
Thank you to the incredible team of doctors and staff at Mercy Childrens. Special shoutout to Erin our ICU nurse. Gavin has decided to write a book about helping children who have to be in the hospital a lot. He asked Erin to write his foreword. 
And of course Dr. P and Dr. Kaine for making this thing work out the least invasive way! Sad I didn't get a pic of Gavin with his docs! Last but not least thank you prayer warriors (even some we do not personally know) for the unending support through prayers, encouragement, etc. We felt your love from a far!!!! I find it very appropriate to end with this quote sent by one of our favorites Mrs. Sheila. So fitting for our Gavin.