Journey of Blessings

Summer has been great- not long enough!!! We have been so busy having fun, swimming, SLEEPING-IN (my favorite part), and going on youth trips! 2 weeks ago Connor, Blake and Morgan went with Randy and I to Miami for our middle school mission trip. It was a great week and such a blessing to see our kids sharing the love of Christ.
Last week, we received the results from Connor's genetic testing: "No disease-causing mutation was detected". As our cardiologist told us, "This is good news for you, bad news for me." This does not mean the boys do not have Hypertrophic Cardiomyopathy, but it does affirm that this is not a "classic case" of it. From the start, Dr. McKenna has said that he has never seen this particular kind of HCM. Which makes it more difficult for our doctor to suggest treatment and assess prognosis. Both of the boys had echocardiograms done last week and their hearts have not changed in appearance or functionality. That is GREAT news: the enlarged portion of the left ventricle has not grown any larger over the past few months. So as things stand right now, there is no need for medication/treatment at this point. Dr. McKenna wants to run a few more blood tests on Connor to rule out any other HCM causing diseases. Results should take several weeks. But, other than that we will follow up every 4-6 months to keep an eye on their hearts and monitor progression. Our next appointment is in mid- December. The best part of our visit was that Dr. McKenna is going to allow "moderate activity" for Connor as he starts 2nd grade which means he can participate in P.E. and best of all, KICK BALL! Connor is so excited about that! Still no competitive sports at this point. We will have to wait on that.
Our prayer continues to be for complete healing. We are so thankful for the provisions the Lord has already made. The past 6 months have been a journey of blessings. God has graciously guided us through our questions and fears and used this opportunity to draw us closer to Him. We have been forced to re-examine many things in our lives and make some tough changes and choices. God speaks the loudest when our hearts are truly open to hear from Him.

Proverbs 3:5-6 says "Trust in the Lord with all your heart; do not depend on your own understanding. Seek His will in all you do, and He will show you which path to take". Over and over in our lives, God has proven this to be true. When Randy and I seek His will for our lives, He is faithful to show it to us. Sometimes it takes a while longer than we think it should and sometimes it is through extraordinary circumstances. But He is faithful. Trusting in God is a choice. He doesn't force it on us or try to convince us it is what we should do. When we do trust Him, it doesn't mean things get easier or that we get a free-pass into a life of no worry or heartache. But when we do choose to trust Him with our lives He promises to guide us, love us and deliver us. Nahum 1:7 "The Lord is GOOD, a refuge in times of trouble. He CARES for those who trust in Him."

Blessings to all of you!!
Jilanna

Luke's Check-up

We took Luke to the cardiologist on Tues and his heart looks the same as it did 3 months ago. Thankfully the area has not gotten any thicker over the past three months and at this point shows to be functioning normally and at full capacity (no blockages or blood-flow restriction, etc.). So, we will follow up with another echo in 5 months and in the meantime, continue to watch for any signs and symptoms of cardiac stress. He is a little underweight so we are going to attempt to fatten the little man up for the next few months. He is a very happy and energetic little boy- already walking at 11 months!

Luke has also been dealing with chronic ear infections for the last 3 months. He has been on 6 different antibiotics but nothing seems to be working. So, our ENT doctor has suggested we have ear tubes put in. This procedure is done all the time and not generally a big deal BUT in his case there are greater risks associated with the anesthesia because of his heart condition. So, please be in prayer for him. The ENT doc has not scheduled the surgery yet- he is waiting on "cardiac clearance" from our cardiologist. Should be scheduled for ear tubes this month or next.

We are still waiting on Connor's genetic test results- they are expected to be complete by mid-July. So, after the results come in, we will follow up with our cardiologist to "make a treatment plan" based on those results. The genetic test will help the doctor determine how best to treat Luke also.

We are enjoying a BUSY summer. Thank you for your support and prayers! Will update in a few weeks.

Help is on the way

A little update~ Last Wed, May 11th Connor had his blood drawn to be sent off for the genetic testing. He did awesome :) It takes 6-8 weeks to process the results. So, until then we wait... They are testing Connor first since they know his heart has the abnormal thickening. Then they will use his results to further test Luke (who also is confirmed to have it) and then the rest of us. The genetic test will hopefully give us a clearer picture of the condition of Connor's heart and direction in treatment.

Connor is feeling great and though his activities are restricted in PE and sports, he is carrying on as usual. He still rides his bike to school every day, wrestles with his brother (and sister :) ) and swims like a champ! He is learning what it means to "listen to his body" and we are learning how to help him do that without him feeling like all of the "fun stuff" is off limits. We are looking into golf lessons currently, which he is really excited about (he had shown interest in the sport before we even knew about his heart)! Luke is also exhibiting no signs of illness. He is growing just as he should be and is trying his hardest to keep up with his brothers and sister! He will be walking SOON I am sure!!

We ask for your prayers for healing of course. And also, for wisdom for Randy and I for the decisions that are soon to come. We feel very blessed to have one of the leading experts in the country as our cardiologist. Please pray for Dr. McKenna as he treats and oversees the care of our children.

Psalm 121:1-2 says, "I raise my eyes toward the mountains. Where will my help come from? My help comes from the Lord, the Maker of heaven and earth." Our hearts are truly at rest, knowing our help comes from the Lord. He has been so sweet and faithful to us over the years as we have sought His will for our lives. He is our stronghold and is never inconsistent with His Word.


"God is our refuge and strength, a helper who is always found in times of trouble" (Ps 46:1)

Blake and Morgan update

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.

Waiting, waiting.... and more waiting

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)

Joining the blog-bandwagon...

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!