After hearing these results, we were given 3 surgical options to help Kaleb. Our appointment with the surgeon is scheduled for Monday November 16th up at Childrens Hospital of Wisconsin. The day of that appointment, we go over our surgery choice and everything will be explained to us in detail. From there, the surgery date gets set and everything is back in God's hands. In regards to Kaleb's genetics update... We have a game changer that has thrown all of us off and keeps us on our toes. Of course all the doctors and our family, wouldn't have it any other way. Kaleb is not a by the book kid and he tends to write his own story. Gentics contacted me the day before Halloween and gave us all the information they had in regards to his genetic testing. They told us they have found a duplicated chromosome gene called the MYH7 gene. The MYH7 gene is the cardiomyopathy gene. In case you don't know what cardiomyopathy is... It's a horrible heart disease that deteriorates the heart muscles. All the geneticists at Rush have never seen a duplicated MYH7 gene like Kaleb's.
They have sent it out to other geneticists, even ones that follow heart patients. So far Kaleb is the first one to have this duplicated gene. They don't know what's going to happen to Kaleb and when. Will Kaleb get this cardiomyopathy as a young adult??? Will he not??? Will Kaleb get this in his adolescence years or as a child??? No one knows the answer since there is no evidence and he is the first so far that they have seen. The MYH7 gene is the worst cardiomyopathy gene and his is duplicated. It is a level 8, so that means it's the worst one for heart disease. It can range from needing medications, multiple heart surgeries, heart transplant, to sudden death. Most of the time there is no onset symptons and these kids/teenagers/young adults, just drop from a heart attack and pass on. At this time, they have no answers for us besides Kaleb is at risk for developing this. He has to be watched and followed not only by his specialists but by genetics as well. Genetics wants us to come back within a year or two, to see if more updated testing has developed, to further their research. Meanwhile they want to be updated on every single health issue or problem that arises in Kaleb.
They don't know if they are seeing something new for the first time, that will eventually tie together all his defects with cardiomyopathy or is it something different. So Kaleb will be the study kid in a way until they find more answers. So in the meantime, we have Kaleb's heart appointment tomorrow for his VSD check and to also clear him for surgery. From this appointment they will be able to determine if Kaleb's VSD needs to be fixed first or if it can wait. They will also check to make sure there is no signs of cardiomyopathy yet. So fingers crossed for tomorrow.
The one thing we can all agree on is.... Everything that's happening inside of Kaleb is not normal. Could it be one big giant coincidence that he has all these different defects effecting different organs?? It could, but most likely not. I have to admit, once genetics told me this news... My heart broke in a million pieces... I just pulled in my driveway and I started picking up all the spilled happy meal fries. I thought I put the car in park but I didn't and it just kept going until it hit our garage. To even allow my mind to go there for one second, that he is at risk of having this heart disease, shattered my world. Then I started to calm down and a little voice inside my head told me... No matter what happens, Kaleb is going to be ok. God is with us. So if indeed Kaleb gets this horrible heart disease, God is with us every step of the way. I don't know or understand why these things happen. But I do know that nothing bad comes from God. God is good.... and sometimes with this beautiful gift of life that he gives us, also comes heartbreak and pain..
We have to choose to remain positive and look at the beautiful side of life and love. It's important to keep our faith because there is no doing this on our own. We are learning many valuable life lessons from Kaleb's journey and are seeing things more clearly. It is a gift, that Kaleb is showing us every day and we are so blessed that God has chosen us to be the parents of this amazing little guy. I refuse to get angry, bitter and to become just a mean person from our experiences. I'm not going to lie and B.S about this all. It is an extremely hard life but we are not alone in this battle.
There are many families struggling like us and we choose to keep the faith no matter how hard it is. We will continue to keep everyone updated. Hope all is well with you and your family. Take care and God Bless!!
Proud Mommy of a Cranio, Chiari and VSD Baby!!!
"God only gave you this life because he knew you were strong enough to live it"
"People are like stained glass windows. They all sparkle and shine when the sun is out. It is when the darkness sets in that HEROES are revealed, as their mesmerizing courage shines through from the light within" - Elizabeth Kubler-Ross
LOVE for Dallas!!!!
Our niece Haley next to Kaleb's heart on the wall at school