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!
video



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!
www.kymellasheart.blogspot.com  

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:

www.youcaring.com/alcapafighters


kymellasheart.blogspot.com


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!

Sunday, March 10, 2013

Strange Episode

Hi everyone!  We are doing great in our new house and love our neighborhood.  It was amazing today with the nice weather watching the boys run around out side with so many new friends.  The boys have been really pretty healthy this year compared to the past so we are really enjoying that.  Jerry did have influenza and gave it to me despite flu shots.  Isaac I think got it too but not too bad because he had been on the tamiflu.

The other day Jerry surprised us with an episode that now we think must be related to his heart.  He was running around playing with some kids that were over.  They were playing some kind of game that involved running around and screaming!  Jerry suddenly stopped and went to the couch and laid down.  He said he didn't feel good.  He looked really pale, his heart was pounding and he was super sweaty.  He tried to get up and play again after a bit but then started crying and laid back down.  This went on for about 30 minutes until he seemed mostly better and we took off to go to Isaac's fun fair at his school.  Jerry was okay in the car but then fell asleep on John when he was carrying him in.  he woke up and said he wanted to play but then started crying and saying his head hurt and he was still tired.  He eventually threw up several times in the waste basket and then fell asleep again for a few minutes.  He woke up and then improved and was fine ever since.  I was hoping it was a virus but obviously not.  We will just have to keep note of this and watch how he does running with all the big kids outside as the weather gets nicer.  Both kids have endocrinology appointments and cardiology appointments in the spring.  That's all for now.  Thanks for checking in with us with emails!  Pictures soon?  I think I have been saying that for a year or more!  Time is flying and life is busy!