Tuesday, June 7, 2016

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!!

Wednesday, August 28, 2013

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!

Monday, July 29, 2013

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!

Thursday, May 16, 2013

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!

Sunday, May 12, 2013

Kym Ella

Please keep praying for Kym Ella!  She is recovering from her second surgery and is super tough but needs your best thoughts and prayers!!  Here are some websites for Kym Ella:



We are so fortunate to be where we are with Jerry right now.  He is a strong little boy and we are so lucky we did not have more complications.  Currently, he is saying he doesn't feel good quite often and has now had at least 4 episodes of feeling sick, throwing up, and then out of it for a bit then completely fine a few hours later.  We will be looking in to this.  Could or could not be heart realted.

Friday, April 12, 2013

Prayers Needed for Kym Ella

Hi friends.  Recently, I have been in contact with Monica who has a baby named Kim Ella with ALCAPA.  Another story of misdiagnosis.  Fortunately, her mother persisted and took her to a second doctor and she had her surgery to correct ALCAPA.  Kim Ella has a lot of damage to her heart and the scar tissue is blocking her artery even after this first surgery.  She is in Cleveland but now talking to Cincianatti about anothe surgery.  She is on 14 medications like Jerry was at one time.  Please pray for her and send your best thoughts.

P.S.  Jerry will be 5!!!!  on May 16th.  He still wears a lot of 24 month clothes and we have an endocronologist appointment the first week of May.  He is playing soccer with 4 and 5 year olds and will be on a T-ball team too.  He is doing private gymnastics (we had a welcome wagon for one month free) and he loves it.  It is amazing how much stronger and confident he has gotten in this short time.  He seems to be doing well since that last episode that worried us, although he has been sick so much with fevers and strange viruses.

Remember KYM ELLA!

Thank you and thanks for keeping up with Jerry!