Milestones!

 Jerry is having such adventures since graduating.  He traveled to the national parks with friends driving and tenting for 18 days!!  As far as Glacier National Park!  He just camped at the site where the Bison attacked a few days ago.  I guess that bison is just a regular hanging out at the site and never usually bothers anyone.  
Jerry had eventually gotten to where he had yearly cardiology appointments and just the other day he graduated to 2 years!!  Our beloved cardiologist Dr. Kenneth Zahka is retiring and we are so happy for him but so sad for us.  We wish him so much joy and longevity as he relishes in family and grandchildren!!   
Jerry had great results with his testing and has no restrictions.  
Off to Ohio University!
So blessed to have this guy and to watch him grow up from that tiny baby that nearly didn't make it!

 So crazy looking back at all of this.  Life took over and it would have been cool to keep this updated, at least once to twice a year with cardiology appointments.  On the other hand, how awesome that life was busy and NORMAL!  As I reread the one update that Jerry was going to need a transplant after all, I am so relieved that the doctor giving us this news was all wrong.  Still have trouble understanding how he came to this conclusion when other doctors were not saying this and it was scary.  

Jerry is graduating highschool in a few months!!  He continued to be small and not be a huge eater but recently started working out  and is on a bulk plan.  I'm going broke now with him using all my protein powder and creatine and eating my high protein yogurt that he wouldn't have touched until recently.  

He continues to see cardiology just once a year and things look pretty good!  There are many risk factors for him and his future with homozygous factor 5, severl other clotting mutations, scar tissue within his heart, and now a pretty significant genetic risk.  My parents, my brother, and my self have all had heart events.  Even though I am very physically fit and do not have high cholesterol, I recently was found to have a complete LAD blockage (widow maker).  Hopefully, this is more related to lupus that Jerry does not have.  

He's off to Ohio University, possibly to study Wildlife Biology.  He has attached to many fallen birds, a duck egg, and other creatures over the years so it seems to fit!

I'm so proud of Jerry and just love so much who he is!  He is always willing to help a friend, has a positive outlook even when things are tough, knows how to have fun, and he has the entertaning bug like me!  He loves hiking and adventures.  We hve had so many funtimes together and letting him grow up is so bitter sweet.  

Big brother Isaac is doing well too!  He's figuring out his early adult life at almost 21.  He is taking some classes for auto mechanics and workign at a mechanic's shop.  Things have never really been easy for him but he keeps pushing through.  The boys had their times as brothers where they really did not get a long in the least.  Today, it's awesome to see them have fun together and support each other.  The boys and I had a great time with a trip to Disney recently and I cherish it.  

Not sure even if anyone will read this I thank everyone who has continued to think of us and pray for Jerry's Little Heart!  
Can't seem to get these pics attached so I will work on that!  

Jerry is 6!

How did I never publish this???  Probably I was going to add photos and never did.  so it looks like the jerry turned 6 post is after the jerry turned 8 post!  Oh well....


My sweet baby turned 6!  I can't believe it.  He is ornery as ever but so so funny!  He is doing great overall.  His endurance is amazing as he keeps up with big brother and all the big kids in his neighborhood.  He graduated from kindergarten and won the "Attitude is Everything" award from his teacher.  He is always smiling and puts a positive spin on any situation.  He makes up for his small size with his smile, energy, and confidence.

He will have a growth appointment this summer and probably need some testing for that.  He is eating pretty well and gaining some weight but really not like he should be.  He will have a cardiology appointment early in the fall with new testing there as well.  I have no concerns for his heart recently.   He has only had a few episodes where he seems to get overly exhausted and feels sick from it.

We found out he has some hearing loss.  He wasn't hearing us at home over the past 6 months or so and I could tell he was not hearing everything at school either.  Mostly I figured it was when he was sick and his ears were clogged but then it continued when there was no congestion.  I had the school SLP test him and he failed.  The ENT put him on steroid nose spray, and antibiotic for the fluid he noticed in his ears.  When we returned there was still fluid.  We will add in an allergy med just in case it is that and return before school starts.  If we cannot get the fluid to clear he will need tubes to get his hearing back to normal.  Always something!

Big brother Isaac is doing well.  His mood issues continue but I really believe we are working in the right direction with a few medications and, as always, lots of positive reinforcements and consistency.  Organized sports became too frustrating for him.  He still plays for fun but has been doing horse back riding and swimming lessons.  He is an amazing reader and so sweet and caring.  He is growing up so fast.  He loves that he can make some of his own simple meals...and so do I!

Enjoy some pics!

Wow! Jerry is 8!

I wish I would have kept up with journaling on here!  Jerry turned 8 on May 16th and is doing really well!  He is NEVER tired!  He loves is karate class and is now a green belt (I think that is the 5th?).  He is finishing 2nd grade.  He is very smart as seen by his test scores in standardized testing and by his wit and sense of humor.  The kid is constantly funny and making us laugh always!  Is emotionally very mature and can talk so well about people should treat other people.  He is somewhat shy in groups and still intimidated some because of his small size.  People that do not know him well have NO IDEA how funny and smart he really is!  I think as he gains confidence in himelf this will be more evident.  He was on Growth Hormone for several months and the change was amazing in increasing his appetite, his height, and his endurance.  He had to stop the shots because of a insurance denial but we are working through that and he should be back on it soon.  We pray for continued growth for him and for good news at his cardiology appointment in August!!

Dancing In The Rain

I have this saying that I love and we even have it on our wall in that removable adhesive design (I couldn't believe I accidentally came across one of my favorite sayings)!  "Life isn't about waiting for the storm to pass, it's about learning to dance in the rain."

Jerry takes that quite literally!

Happy Updates

Jerry and Isaac both saw the endocrinologist again for their ongoing growth concerns.  They both grew pretty well!  However, they both have to be rechecked in 6 months.  The doctor is reluctant to believe that Isaac's one year of no growth was a fluke so we need to watch a little longer.  But at least no invasive testing or horrible spit cortisol testing!  Jerry grew but is lower on the growth chart percentage wise.  he is about 2 % for weight and 3% for height.  He still never has a huge appetite.  He eats better than he used to but never any huge amount and hardly anything for breakfast.  So the doctor wants him to try the appetite stimulant again that he took years ago.  we never were sure how much it helped and it always did seem to wear off when it did work.  I gave it to him two nights but he seemed to feel so sick the next morning and for sure ate worse than normal all day on those days.  I just heard back from the doctor and he still wants me to try to give it to him at a little lower dose.  Happy for him that they did not want to repeat the very invasive IV test that we tried to do with him some time around a year ago.

Jerry hasn't had too many of the vomiting, sweaty, sick episodes lately.  No one really knows why he has them.


I am so proud of both Isaac and Jerry.  At the Lake Erie Crushers game a few weeks ago, they had a koolaid sale and raised about $100 for heart disease!  They never complained the whole time and never asked for a cent of the profits!  We haven't decided where to donate the money yet...Little Hearts?  Children's Cardiomyopathy Foundation?  Wish I could find a way to get a company to double the amount!
Enjoy the pics!

I am so proud of both Isaac and Jerry.  At the Lake Erie Crushers game a few weeks ago, they had a koolaid sale and raised about $100 for heart disease!  They never complained the whole time and never asked for a cent of the profits!  We haven't decided where to donate the money yet...Little Hearts?  Children's Cardiomyopathy Foundation?  Wish I could find a way to get a company to double the amount!
Enjoy the pics!

Jerry got a police motorcycle for his birthday!

 New cousins when Aunt Sandy's dog Maggie had pups.  All the cousins are sold now..boo hoo.

 These adorable little chicks and their mom were in are back yard.  sooo cute!

 Jerry was one mean ball player once he figured out where these sun deflectors go!!  Ha ha!

 Jerry took his best friend Connor to Kiddie Park for his birthday (with his face painting on from the night before!)

 Cousin Rebekah manages a farm in Columbus.  We went to visit her and had a blast!

Jerry is Five!!

My strong little guy is really growing up!  He is five today and is SOOOO happy!  People may still guess that he is 3 but when they see and hear him in action there is no doubt of his at least 5 strong years!  We give thanks to God for everyday with Jerry and Isaac and for all the circumstances that have allowed Jerry to surpass such negative odds with his heart dissease!  Kiss your babies and take in all you can!

Please keep up the prayers and positive thoughts for Kym Ella!!!  She has rebounded after her second open heart for ALCAPA and some rough complications!!  Go here to see this amazing beautiful little girl!
www.kymellasheart.blogspot.com