Well, we got some great news yesterday at the cardiologist visit with Blake and Morgan. Their little hearts are beautiful and functioning normally. What a HUGE blessing!
As I said before... our entire family will still have to have the genetic testing done. Since Connor and Luke have identical cardiomyopathies, they believe it is genetic. Meaning, Randy or myself carries the gene AND Blake and/or Morgan could also, even though all of us had normal echocardiograms. Whoever is a carrier would be born with the gene but not necessarily exhibit any symptoms at birth. The gene basically decides when it wants to manifest itself. You can be a carrier and have no symptoms for years.
They will do an extensive genetic test on Connor first since they KNOW he has hypertrophic cardiomyopathy. The doctor told us yesterday it typically takes 4-6 weeks to get the results back. Then they will test all of us to determine who else is a carrier. The information they can obtain from genetic tests is very specific. It really is amazing. Once they determine who the carrier's are, they can monitor each one closely and devise a treatment plan.
Thank you all for your continued prayers.
Today was a LOOOOONG day at the cardiologist office.
What we DO know:
Diagnosis (Luke and Connor): "hypertrophic cardiomyopathy (non-obstructive)" (google it)
Mine and Randy's echocardiograms are normal- no apparent hypertrophic cardiomyopathies based on what the eye can see. Genetic testing would be the only way to rule it out completely, as it can be asymptomatic.
We will be taking the kids back to cardiologist every few months at this point to monitor progression.
Connor will undergo genetic screening (blood test) to determine cause of the cardiomyopathy. Takes several months to get results.
Holter monitor results(what they wore for 24 hrs. to determine if arythmia present during daily activity):normal
Connor stress test: abnormal (so, no competitive sports right now- will do stress tests periodically to monitor for changes)
No suggested treatment until we get results of genetic testing
What we DO NOT know:
What is causing the hypertrophic cardiomyopathy and status of its' progression
Whether Blake and Morgan's hearts look the same as the other two children (echo's scheduled for next wk)
Still alot of questions looming for us. At this point, he first thing Dr. McKenna wants to have us do is a simple blood test on Connor that will start the process of genetic testing. Until we get those results, which will take a few months, he will monitor the children closely. So we will wait...
The kids daily life and activities will not change drastically. No competitive sports until we know better what we are dealing with. Dr. McKenna is being very thorough and conservative in his diagnosing/ treatment of the kids which we are very grateful for. He literally spent hours with our family today going over all of the test results and answering our questions. We don't understand it all, but feel like he has been very straightforward and is taking a wise approach. He is an answer to prayers.
We covet your prayers and ask that you continue to lift our family up to our most gracious and loving Father. He made us all "precious in His sight" and we know He has a mighty plan for our lives and this is part of that plan. Nothing takes Him by surprise and there is never a moment where He is not in full control and we rest in that. He is faithful and TRUE.
Consider it a great joy, my brothers, whenever you experience various trials, knowing that the testing of your faith produces endurance. But endurance must do its complete work, so that you may be mature and complete, lacking nothing. James 1:2-4 (HCSB)
Welcome into our little world of Wilson's! We thought it might be a good idea to get on the blog-bandwagon so we can keep you all up to date on our lives. If you are just catching up on us... We do have bunches of Wilsons: Connor (7), Blake (5), Morgan (3) and Luke (8 months). We live in Plant City, FL (the strawberry capital of the world!), where Randy serves as FBC's Student Pastor. We have lived here for over 5 years and love FLORIDA!! Some of our favorite things familiar to the Florida lifestyle: day trips to Disney and some of the most beautiful beaches in the world, fresh produce all year round, and most of all: scuba diving!
On another note... Some unexpected events have crept up on us these past few weeks. The term, "cardiomyopathy" has recently entered into our family vocabulary. Not a word I have enjoyed familiarizing myself with. But alas, here we are... A few weeks ago, we were sent to a pediatric cardiologist to determine that the murmur Luke was born with, is innocent. Which, it is. However, during the echocardiogram that day it was discovered that he does have a cardiomyopathy. The posterior wall of his left ventricle is enlarged (the size of a teen/adult), with no other signs or symptoms. Normal EKG, normal blood pressure, etc. Due to the results, they wanted to run echo's on the other kids to see if it runs in the family. Turns out that it does... The doctor performed an echocardiogram on Connor which revealed a cardiomyopathy identical to Luke's. (today Randy and I had echo's done- results pending. Next week echo's will be performed on Blake and Morgan to make the same determination).Other tests have been ordered to determine what it is we are dealing with. We are scheduled to meet with a specialist on Fri. to see where we need to go from here... we will keep you updated.
Thank you to all who have been praying for us! We trust the Lord completely. He knows us better than we know ourselves and is already preparing us for this journey.
We will update you soon!
