Our new journey...

Well, well. Look who's back to the land of the bloggers. It's been so long I don't even know for sure if I know HOW to publish this post. Blogger has made a few changes since I last posted! 

So much has changed and happened since our last chat. This little blog of mine is making a major left turn. Or maybe it's a right turn. I'm not even sure which way I'm going at this point. All I know is we are slowly managing to gain our footing again and get good air into our lungs. 

21 days ago, On August 16th, 2012, our lives changed forever. I'm tempted to write every little detail here so I can have it forever, but the truth is, I'd rather just remember the gist of it. It was a roller coaster ride and  I HATE roller coasters. I hate the feeling that you are floating out of your seat and have NO control. I feel that way every day or two still. 

So, here's the gist of it. Case was battling the worst pneumonia we have ever seen. His left lobe was completely white in the x-rays and one of our sweet doctors detected a murmur. His blood test came back negative and the radiologist thought his lung had collapsed. Jason picked up the phone and called his brother, Craig, who is a doctor. Craig's gut started screaming at him so he wanted us to come to him so he could get his hands on him and make sure his Uncle instincts were wrong. They weren't . He ordered an echo and an EKG and within 24 hours Case had a diagnosis of Hypertrophic Cardiomyopothy, HCM. 6 days later, Kooper was diagnosed as well. 

Let's get all the blah, blah, blah out of the way:

This is the wikipedia definition of HCM: ("HCM") is a disease of the myocardium (the muscle of the heart) in which a portion of the myocardium ishypertrophied (thickened) without any obvious cause. It is perhaps most well known as a leading cause of sudden cardiac death in young athletes. The occurrence of hypertrophic cardiomyopathy is a significant cause of sudden unexpected cardiac death in any age group and as a cause of disabling cardiac symptoms. Younger people are likely to have a more severe form of hypertrophic cardiomyopathy

HCM is frequently asymptomatic until sudden cardiac death, and for this reason some suggest routinely screening certain populations for this disease.^[8]

A cardiomyopathy is a primary disease that affects the muscle of the heart. With hypertrophic cardiomyopathy (HCM), the sarcomeres (contractile elements) in the heart increase in size, which results in the thickening of the heart muscle. In addition, the normal alignment of muscle cells is disrupted, a phenomenon known as myocardial disarray. HCM also causes disruptions of the electrical functions of the heart. HCM is most commonly due to a mutation in one of 9 sarcomeric genes that results in a mutated protein in the sarcomere, the primary component of the myocyte(the muscle cell of the heart).

I will add that it is a congenital heart disease. We are in the process of working our way around doing genetic testing on all of us. We have no results back from the lab yet. 

In Kooper's diagnosis there is a very small chance that the growth in his septum could be caused by hypertension. His blood pressure was THROUGH the ROOF in the clinic. Hypertension would be highly unusual in a child in such great health as Koop. He eats right, doesn't drink Cokes, and is in fabulous shape. Hypertension does make the septum increase in size, though. Our Cardiologist put him on a beta blocker that will also bring his blood pressure down. When we go back in a few weeks, if the Septum is normal size, he will continue to take blood pressure meds and will be doctoring him for hypertension. He will released from his HCM diagnosis.  As in, play sports. If the Septum is still enlarged, because HCM is not reversable, his diagnosis will stand.

My girls are clear so far. Kate has had an echo and has the all clear, but if her genetics test comes back positive  she will be on a strict check up schedule to check for growth. 

Kenna Mae will get tested when Jason and I do. It's allllll about insurance companies and their crazy process, ya know! 

Let me first say that in my book, Craig saved the life of my boys. We are so grateful we "accidentally" found this terrible disease that takes the life of so many active children. God was in the gut of him that day. We will forever be showering Craig with thanks. He is one awesome Uncle. Our God is one awesome God.

Having established our PRAISE THE LORD moment :)...The most important factor in controlling HCM is no activity. As you can imaging, this news has broken the hearts of our family. If you will scroll back on this blog you will see what this has done to my SUPER active boys. Kooper was starting his first year as a "real" football player and CJHS Bobkitten. Heartbroken. I am going to post a few of my facebook posts here on this blog so I can have everything in one place. Someday I want to reflect back and remember how far we have come. Right now, everything is in a fog and slow motion. 

I have been posting on facebook trying to keep everyone informed and in touch about all this. Facebook just seems so inappropriate.  There are A LOT of people who want to hear my heart screaming out for prayers. However, there are some that just want to hear about what we ate for dinner. So, I decided to start posting here on the ole blog again and post a link on facebook for my friends. Those that want to hear all the yah, yah can click over and read. Others can keep on scrolling! I often have too much to say for facebook anyway. 

This blog is making a come back! :) I hope you stop back by! 

Facebook post over the last few weeks:

August 16th via Church of Christ: We are asking for prayers for Jason & Amy Horton and family. Case (their almost 9-yr-old son--his bday is next week) has been diagnosed with Hypertrophic Cardiomyopathy (HCM). Needless to say, they are in need of LOTS of prayers as they face many unanswered questions and adjustments in the next few days/weeks/months!

8/16 Phoebe Pleming: Sending hugs for Case. Such a neat kid. I am heartbroken for your concerns and disappointment but Case will still kick butt. If anyone know how to rise above, it's Case Horton!!

8/17 Momma Post(that's me!): Most of you know by now that Case has been diagnosed with Hypertrophic Cardiomyopothy (HCM). I have spent the last 10 minutes reading every prayer and note posted for our Case. We feel as though we are on an emotional roller coaster right now. We work our way up high praising God for the pneumonia that lead us to find this scary disease that is the leading cause of sudden death in children and at

hletes. Then we feel like we have been deflated with the realization that our flag pulling, 3 point shooting(and mostly missing lol), home run hitting, sports lover will never find himself on the field on Friday nights or hitting one alllll the way over. We are well aware that this disease could have and probably would have killed our little guy and because of that my heart wants to burst with Thanksgiving! We ask for your prayers as we wade through the genetic testing to find out if any of our other kiddos have it, too. Case is one awesome little dude and is taking the news minute by minute. I'm pretty sure he's going to find a cure for cancer or be the president someday. ;) God has BIG plans for him! We love you all and are so blessed by each and every one of you!

8/17 Momma: 

Headed to the mountains for a few days. There's something so peaceful about the air up there. The perfect place to clear your mind and prayerfully find peace in times of uncertainty and understanding in times when life seems unfair. Can't wait to spend time with the Horton gang! :) yay!!! Red River, here come the Griswalds!

8/17 Cynthia(college roomie):Oh my goodness Amy. I don't know how I missed these posts about Case. You and Jason are an AMAZING christian couple. I know that God will wrap his arms around your little boy and give him and your entire family the peace you need to see this thing through. 

There is something about good people, and you and Jason are a true description of good, wholesome, and genuinely loving people. I know God will work in your lives to give you the strength to overcome this awful situation. The Brickhandler's are praying for ya!
Isaiah 41:10 "Don’t be afraid, for I am with you. Don’t be discouraged, for I am your God.
I will strengthen you and help you. I will hold you up with my victorious right hand."

8/17 Richard Ramos Case's baseball coach-2nd grade:This year I was blessed to coach a kid named Case. He is a coaches dream. Outgoing, hard working, and just a ball player all around. Today I have found out that he was diagnosed with HCM. I don't really know all the details but I know my Lil man needs some prayers right now as well as his family. So I'm extending this to my fb friends. He is such a good kid and so fun to be around. I wish that all of you could see how special he is. If you have a quick second, send a little prayer. To Case, you're a fighter kid. I know you will get above this. Love ya kid.

8/18 Coach Ramos:Just can't quit thinking of Case. I need a second hand man always. If he can't play again he can be right by my side. Cause I know he will be right by my side.

8/22 Momma:A word about my awesome little Case: For those of you who don't know, Hypertrophic Cardiomyopothy is a disease of the heart which, basically, causes the muscle to grow at a fast pace and get too thick for blood to flow correctly(very loose definition!lol!). Today, the little dude came in and had drawn a tattoo on his arm. I could make out the heart but wasn't sure about the other parts of his drawing. He said, "look, Momma. It's my heart with HUGE muscles!" He's so proud! :)

8/23 Momma:Not the news we were hoping for. It's a long, drawn out, confusing explanation, but they are afraid Kooper has hypertension and possible HCM. His heart was not near as bad as case, but there was slight growth of the muscle. We are waiting in several results before a definite diagnosis is made, but football is out this year no matter. :( however, Kate was all clear so we are feeling grateful for that!!

8/29 Momma:Change is painful. It doesn't matter if it's changing your hair color, the home you live in, or mindless unimportant daily activities, it hurts. The CHOICE is how you handle the change. You get to chose if you will handle it with dignity and grace or if you'll go about it kicking and screaming. I fear, it might be miserable either way. Choose your battles, be grateful for your family and their health, keep your head down and your mouth closed, and CHOOSE dignity and peace.

8/31 Momma:To be honest, when my boys were first diagnosed my first instinct was to grab up my family and RUN. Run somewhere where people don't know us and where my boys could start over, undefined by what they once did. Somewhere that every time I pass the football field I don't knot up with hurt for the things my boys are giving up. This week I have been reminded over and over again why we stay. We stay be

cause going to our church home (that I have been hiding from since they were diagnosed) on Wednesday night will bring us face to face with people who love us, who cry for us, who rejoice with us over an accidental finding of an otherwise deadly disease, who make me laugh when I thought I could only muster tears. We stay because here, in small town America, I pull up beside a friend in the drop off line at JH who not only works for us, she prays for us, she goes to church with us and even sheds a tear with me with the windows down and a line forming behind us as we look together out onto the football field full of kids decked out in blue and white. We stay because here the coaches and our amazing principal actually LOVE our boy and refuse to let him quit athletics. We stay because MY BOY was one of the kids dressed in blue and white. We stay because our coaches are determined to find a place for him no matter what because they see the fire in his eyes and the spunk in his step. Kooper Horton; #16 and kicker of the CJHS Bobkittens.

9/5 Momma:

We are so blessed with a brilliant, kind, caring cardiologist for the boys. Yesterday, in the almost 2 hours we were in his office, he cleared Kate for a year, talked about cars, decided to send Case on to Houston rather than making us wait until all the genetics tests are done, sent Koop a message that he CAN NOT lift weights, hugged us all good bye and gave me his private cell phone number and told me to call or text him anytime. Just another sign we are in good hands. One day at a time we are wading through the mud and muck. We are blessed.

9/6 Momma:Case Horton has some amazing little friends. He is starting to finally talk to us about his disease. He's been in complete denial for the last few weeks. This morning the words were FLYING out of his mouth right and left and I could barely hold in my emotions. He's going to be just FINE, but YOUR children are making it a little easier for him. From being the "all time passing QB" on the playground

 to sitting with him because they can't stand to watch him sit alone while all the other kids are playing noodle tag in PE...he is taking names and notes and they are making a mark on his heart. it is a direct representation of YOU. I love you guys for raising such sweet kids!

 

We have had hundreds of prayers said for us the last few weeks. HUNDREDS of people reaching out to us, posting on facebook, text, calling, and emails. We are wading through one day at a time, deciding the best course for our little family to make. I am honored to have such great friends and family helping us along the way!