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  

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.

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!

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!  

Updates

Crazy times!  Getting the keys for our new house tomorrow!  It will be nice to give my mom her house back and be on our own.  It has been quite a roller coaster ride.

So Isaac had 3 different tests for Cushing's Disease.  It is very rare, especially in kids, and very difficult to diagnose.  One of the tests for Isaac was positive and the others were normal.  The doctor thinks the one was a fluke and it is not likely that he has Cushing's.  He has a lot of symptoms but hopefully they are just coincidence.  He has grown some since he had the year of not growing (taller) and gaining weight quickly so now we are going to just recheck him in 6 months and see where he is at.  We will have his heart rechecked in the summer too.  Isaac's insulin growth factor test came back normal too.  For Jerry, that test is very low.

Jerry is also on hold until at least spring.  He has a very low IGF1 but normal pituitary from what they saw on the MRI.  His heart looked great on the MRI too!!  I need to post a picture of him holding his first normal EKG!  He is off of his enalapril medication but still takes baby aspirin.  He is fine off of the heart medicine now but the doctors cannot figure out why he has always had this awful reaction to missing a dose and it was the same when we went off of it.  Since they can't see why it would be I kept thinking it is just a fluke and it can't really be connected...well, after 6 times now...I am sure it is connected to missing enalapril.  He would get super tired, very nauseous and sometimes throw up, some headache and then sleep for hours crying on and off and then get over it.  Sweating too.  Very strange I guess.  Kind of bothers me that no one knows why he got that way but he is really fine now off of it.  The scar tissue they thought would not go away did!  He does still have some remaining where the surgery was and it has to be monitored but really this is great news!  He still is not gaining weight or growing well.  He at some point will probably have to redo that test where they could not get the IV in.  Ugggggggggghhhhh!  But for now we are just going to settle in our new house and keep enjoying preschool!

That's about it for now.  Thanks to everyone for checking in with us!  Merry Christmas!

Great Results! And a Funny Story...

Jerry's heart looked great on the MRI.  They were surprised they could get good images at his age but his heart rate stayed nice and slow.  His arteries were not blocked and this is such great news.  He may still run into complications later and still needs to have heart scans regularly.  His pituitary looked normal in the brain scan which is not ALL great news.  If it showed to be a little small it would make sense that he needed growth hormone because enough could not be produced.  Since it is normal we need to go back to that awful growth hormone stim test.  We know he has low IGF-1 which is kind of like the messenger to make the growth hormone do what it is supposed to do.  But it could still be low hormone that is the more exact cause.  Both things need different medications and the only way to know which is the stim test that we tried where they could not get the IV in.  We are just on hold now until John's new job insurance kicks in.

Isaac's igf-1 test has not come back yet.  We did this crazy saliva cortisol test where he was supposed to spit in the cup from 11:30pm to midnight but it turns out we got the wrong directions from the dr.  It is a certain vial thing we needed and actually he has a sponge like thing in his mouth for 2 minutes during that half hour and then it goes in the vial and to the lab.  so we have to do that all over.  I think they are testing for some crazy thing called cushings disease because Isaac had significantly slowed linear growth and rapid weight gain.  He does actually have some of the other symptoms so it is kind of scary but I am SURE it is not that.

So here is a funny story from a month or so ago.  Jerry and Isaac were tucked into bed and I could hear them talking on the monitor.  There have been many funny conversations.  This one tops them all.
J--Isaac, I am not sure who is going to be older first, me or you.  Who is going to be a grown up?

I--Jerry!!  I AM OLDER!  YOU WILL NOT be 18 and I will.  I will move out on my own and leave the house.  I can get a job.  YOU CAN NOT!  You will not be as old as me.  After a lot more birthdays after I turn 18 then maybe you will be doing it.

J--But I don't know who is going to die first

At this point my heart starts aching and I want to go in but I listen...

I--Jerry, nobody knows that

J--I can't wait to go to heaven!!

I--Jerry, you don't want to do that, bad stuff happens on the way to heaven.  You get run over by a truck, you maybe get shot or fall off a mountain, or have a heart attack.

YES, Now I rush in.  "Okay...no one is going to die, no one is going to get shot or hit by a car..."

Crazy!  Jerry is always talking about heaven and about his Papa and his Nonno.  He said a few days ago that Papa is learning all of his music with him from his music player and the music he learns at school.  He talks about all the colors of heaven and how beautiful it is.  I wish he didn't have to even know of death but at least he somehow is so much more convinced of the amazing after life than most!

I also did try to tell them how God makes everything okay when we are going to be with him and how it is just hard for people that miss his new angels.  Such a tough thing to explain...

All Done and Done Well!

Jerry did an amazing job today!  He was so cooperative and pleasant and did everything they needed him to do.  Since he showed no real anxiety or resistance they did not even give him the liquid medicine to calm down.  He just made his gas mask smell good with smelly chapstick and breathed in when it was time.  He had a rough time waking up but did fine coming off of the ventilator and we were able to leave pretty soon after he was awake.  I am so glad it is over and thank God that Jerry did so well and there were no complications.  I will hopefully talk to the doctors tomorrow about the results of both his heart and brain MRIs.  My poor little guy.  I really hope we can be done with this stuff soon.  A year with out some kind of a test would be so nice for him.  Exhausted...off to bed.

Can't Wait...

Till it's over!  Jerry has MRI procedures on Tuesday.  We need to be downtown by 7am (at least it's Cleveland downtown and not Chicago!).  He will have an MRI of his brain to look at his pituitary gland for any abnormalities and will have an MRI of his heart.  If the pictures are not clear because he is too small for a heart MRI then they will discontinue it.  Hopefully they will get good pictures and, even more importantly, we hope they show that the artery and the aorta are fine.  If this is true, he will not have to have the heart cath that would be scheduled next year.  He will be fully under anesthesia and intubated.  I am sure he will be fine but it is still very scary for us.  We just cannot wait until this is over.

I have talked with Jerry a little bit about how it will go and think he will do okay.  He will drink a little medicine to make him sleepy and then breath in the gas to go completely to sleep.  Then he should not feel them put in the IV.

Isaac is going through the testing for his lack of linear growth and sudden increase in weight gain.  He is TERRIFIED of his blood test.  We are going to go after school tomorrow.  I told him about it tonight and tried to focus on the "fun thing" after it is over.  He cried really for over an hour almost until it was time for bed.  Hopefully he will not totally fight the whole thing and will realize actually that it is not that bad.  Then, at some point, Isaac has this really strange test to do for cortisol levels.  I have to wake him at 11:30 at night and have him spit all of his saliva in a cup until midnight.  STRANGE, I know.  He is not nice in the middle of the night and this will for sure be a huge battle and I can hardly blame him!!  He is doing a lot of sleep walking these days and when we gently guide him back to bed he starts to wake up and is very angry.  One sleep walking episode we found him by the door to go outside putting on his shoes!

John got a new job!!  I can't remember if he had it already at the last post...  So we are bidding on houses.  Yes, houses.  We tried one and they didn't go down as low as we wanted so we found another.  It is so tough because we have been in limbo so much longer than we had planned and now I feel like we are kind of rushing to get a house...a house that is supposed to be our forever house!  

Between all of these things and being pretty sick with a bronchitis, I have not gotten hardly any sleep.  To get settled in our own house and be done with all of this testing will be so nice.  I hope they really figure out something that will help Jerry's appetite.  He is not eating real well and I don't think he has gained an ounce in a year.  He did just gain an inch or so recently and looks so lean.  Oh, I almost forgot something so important!  Jerry is going to PRESCHOOL!  I never thought he would be healthy enough and just wasn't sure it would happen.  He is loving every second of it and sings all the songs from school.  He just beams getting out of the car and running in.  It is so amazing to see him like this and I am just so happy for him.  I stayed at school with him for the first few days and it was so cool to see him do all the school things for the first time.  Also amazing is that he has gotten over a cold and then a cough without an ear infection and never got my high fever and cough that my mom also had!  Feeling very Blessed...

Off to bed now.  pictures tomorrow...maybe...always run out of time.  Updates for sure after Tuesday.

Great Exam!

Jerry's heart looks better than we or the doctors expected!  His EKG was completely normal which we never really expected and his scar tissue around his heart is resolved.  At a certain point they told us that it had stopped changing and would probably be permanent.  This is such really great news!  However, there are still some parts of his heart that they cannot see clearly on the echo.  That is why he will have a heart cath  next year.  I guess sometimes the scar tissue there can be an interference and can also change with his growth and puberty.  Sometimes kids are fine and need no meds for a time but then need them again later.  An MRI is another way to look at his heart but not usually as good for small kids.  Since Jerry is having an MRI for his pituitary at the end of September, the cardiologist thinks they might tack on a heart MRI as well.    I told them that I do not think he would be intubated for the pituitary but fully under anesthesia.  He would for sure need intubated to do the heart MRI.  Interesting that Jerry's improved heart matches my observations.  He has not done that strange breathing thing in a long time and also has not been sweating like he used to.  He is pretty good with his endurance with running and riding his bike!  We just watch him sometimes (even doing nothing!) and smile!  Thanks to you all for your thoughts and prayers!  Amazing things have happened for Jerry!!

Updates for Cardiology and Growth Testing

Jerry has his cardiology appointment on Friday.  Hopefully the results will be that his heart is stable.  I am sure he will show all the scar tissue around his heart since we do not expect that to go away.  If anything, I am less worried about his heart because he appears to be sweating so much less now and does not do this strange hard breathing thing he used to do quite often.  Of course, there is always a little nervousness about them finding something has gotten worse since there are often no signs of this.

Jerry is scheduled for an MRI of his brain to look at his pituitary in September.  Some kids that don't make growth hormone have a pituitary that is too small or in the wrong place.  We have to be at main campus CC at 7 am.  He will be given an oral medication to sedate him somewhat and then breath anesthetic through a mask (could be tricky) to fully be asleep.  Then they will put the IV in and he will not feel it.  He will be asleep at least an hour and a half.  He should not have to have a ventilator but if he is having any trouble they will put one in.  The other growth hormone testing with IV and shots was supposed to somehow be combined with this but I have not gotten a call back on how this will work.  I have a feeling that they won't be able to do it.  If he is going to need hormone shots every day my hope is that they can just figure that out from the MRI so we don't have to go through more testing.  The anesthesia scares me a little for Jerry because he is so small.  It will be so good for it to be over.

I think Isaac grew maybe a half an inch but his appointment with endocrinology is at the end of September.  He has not had any further chest pains but we will be watching for that with fall soccer and gym class.

John is working hard with interviews and I hope closer to finding the perfect job so we can buy a house.  It is a year today that we moved in with my mom and I never would have guessed it would be this long!!!  Hopefully, by December if not sooner we will be finished with all this testing, living in our own house and on with the next adventure!

How did it go? It didn't!

My tough little guy endured lots of poking, prodding, and the worst...that big rubber band that pinches your skin and squeezes your arm.  Despite lots of patience, warm wraps, and ball squeezing, Jerry's veins could not be accessed.  Since they could not get an IV in they couldn't do any of the test.  So horrible.  He hated that rubber band part and I think just the slowness of the whole thing.  They would tourniquet one arm and clean it and feel it for several minutes then switch arms.  Then go to the other and somewhere in there attempted and moved around the needle for several minutes in each arm.   He did pretty good with the needle part it was the other part that was really annoying for him.  He said while they were doing it "stop it! You're bothering me!"  As if it was just a big inconvenience!   We bounced back quick when we decided that it just wasn't going to happen today and he was so happy with this little lunch box they gave him and happily said good-bye as we headed off for chuck e cheese.  Oh Yes, he also cried for Isaac for a few minutes who we left with Gigi.  So sweet.  So I guess what will happen is we go to Cleveland clinic main campus and get the IV (better at doing it?) there and then travel to this east side location to get the test.  Sounds like a lot and a lot of anticipation for my little guy.  I am hoping they can come up with another option.  Will wait to hear.

If Isaac has to have this I am more worried about how he will handle it.  He is not as used to this stuff and last night when I told him that I wouldn't be home in the am because we were taking Jerry for a test, he could not be quiet with his anxiety.  He kept saying stuff to Jerry..."Jerry, I am really worried and scared for you.  Jerry, I hope you are okay and it won't hurt really bad.  Jerry, I am sorry for all the mean things I ever did to you."  It was sweet yet I needed him to stop because he was making Jerry more anxious!

I always know there are worse things out there that people are dealing with and that helps me somewhat to be strong about all of it.  Here is an example of just an unbelievable story.  This family had one child with heart disease who had a transplant.  The whole family was tested and thought to be fine.  Now they have come to find out that all of their children have heart disease or flags to watch for.  here is the link.
http://video.today.msnbc.msn.com/today/48284798#48284798

growth hormone stim test tomorrow

The day I've been so anxious about is here.  I told Jerry tonight about the test we were taking him for tomorrow.  He pretty much ignored me the first few times and then finally just said he wasn't going to sleep tonight...as if tomorrow would never come then.  Then he asked if he needed a shot so I told him the truth about an IV and about a shot but focused on all the fun things I was bringing for us to do and that afterwards we could go do whatever fun thing he wanted.  Chuck E Cheese it is.  I reminded him that he knows how to do his breathing to relax and make it go faster and not hurt very much.  He seemed good and was able to maintain a good mood and normal activity for bed tonight.  He's going to want juice in the morning and I didn't tell him that he won't be able to have anything to eat or drink until after the test is over.  That will be the biggest morning obstacle before we leave the house at 7am.  I feel bad for my sweet boy having to go through all of this but I know he will do fine.  I just hope they have some valium for me!

I have some really funny stories to write about Isaac and Jerry but need some sleep now.  Hopefully I will get to them soon after the update about tomorrow.

Whew!

Got Isaac in to see Dr. Mehta today!  So elated to find out that everything looks fine!!  As I thought, the EKGs can be inaccurate especially in kids.  Isaac has a 3rd heart sound which is normal in some kids and all his measurements for his heart are within normal limits.  Dr. Mehta will recheck  him in a year because of his symptoms and family history but believes that Isaac is fine.  He thinks that Isaac's symptoms may be from his asthma.  I am so glad that is over with for now!!

So we still have to deal with the hormone growth test for Jerry and then take Isaac to the endocrinologist for his lack of growth this year.  On to these next things....

Thanks to everyone for sticking with us and praying for us through this situation with Isaac!

getting by...thankful for fun days!

First...I keep finding really bad mistakes/typos in my blog...like hear for hair.  They changed the whole blog system and I can't figure out how to get to my old posts to edit them.  Driving me crazy!

Today John played in the yard with the kids while he cleaned the grill.  I packed for a picnic and we went to the metroparks and cooked out on a charcoal bbq grill!  We went hiking and played by the water.  It was great fun.  The boys are really into birds right now thanks to my mom!  We saw a woodpecker and that was really exciting.  Jerry thinks EVERYTHING is a bald eagle!  We brought bikes but had no time really for that.

I told Isaac that the test showed his heart might not be beating quite right so he is going to have an echo...like he watched Jerry have several times.  He said "oh, okay, I don't care."  He is so hard to read.  He could really not be thinking of it or he could let me know in a few days that he has been really worried about it.  He is making me so nervous when he is running around  now.  I kind of was even wondering if he is trying to show me he is fine.  He seems to be calling attention to the fact that he is running around...that could not be though...not sure.  I told him to always stop if he feels too tired or his chest hurts and to always let me know. Other than that I am not really restricting him.  With most heart disease and little kids it is assumed they will self regulate and stop on their own when they are tired...which does seem true with Isaac and Jerry.  I am not overly worried that it could be to bad because his appetite is great, he has good color, and generally he feels pretty well.  Of course I know so many stories of kids with no symptoms who were actually in pretty serious condition too.

Tomorrow we have tickets for the Indians game.  The boys are supposed to wear their baseball jerseys and they get to run around the bases and be in a parade around the stadium.  We are going to do our best but it is going to be really hot!  We will have to be kind of careful for both of my boys.  Thanks to everyone checking in with email.  It helps a lot to know you are all thinking of us.

I pray this all turns out to be a big false alarm with Isaac's heart.