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.

Isaac's EKG

Yes, ISAAC'S EKG.  Never thought I would be writing about that!  With much anxiety, I am posting about Isaac's abnormal EKG results.  Finally got the results today.  I knew it would be bad news because yesterday was our pediatrician's day off and the other doctors in the office wouldn't "give me the results because they didn't know Isaac's history."  I said "they can't even just tell me it's normal?" and I didn't get much response from that.  So Dr. Lim told me today that it showed an irregular rhythm and probable enlargement on the left side.  I still feel like this can't be happening.  Also I just think it could be a mistake because pediatric EKGs can be confusing.  Working on getting an appointment now.  All of this on my mind and still Jerry's horrible growth stim test coming up.

I planted the seed with Jerry about his growth problem.  Poor kid...we are always telling him to eat this or that or more and he will grow.  Now I have to tell him he has to go through this awful testing to find out why he's really not growing.  I told him the doctors are trying to help figure out if something is missing in him that is supposed to tell his body to grow.  He stopped what he was doing and said "Wait a minute....are you telling me I have to get a shot?  Do I have a check up today or not?"  All that with such seriousness.  I promised him I would tell him whenever something was coming up and left it at that.  I also told him he is doing a good job eating so something else must not be quite right.  He went back to playing and said "I'm going to be really big like Isaac!"  Little does he know that Isaac may have the same problem!  Hopefully more news and better news soon about Isaac's little heart!

Jerry and now Isaac...update

Realize that I kind of left the end of my last blog in a weird place.  To finish up, I brought Isaac today for his heart type symptoms and to follow up on the growth.  He will have a chest x-ray and an EKG this week and also a bone age x-ray for the growth problem.  I will call the endocrinologist for an appointment for him and he will probably have the same blood work jerry had to start out.

Jerry has that horrible growth hormone stim test on the 31st.  NOT looking forward to that!  This just all seems surreal...all of this going on with him and with Isaac.

Both boys are just so funny and it is so good they keep us laughing through all of this!  Despite all this too, we are trying to make summer super fun!  The outdoor adventures are all so close to here and the kids love the beach, hiking, and water parks!

One thing that we are missing a lot right now is Nonno (Grandpa), John's Dad.  Otello Sacco passed away during a nap on Easter.  He was not feeling well for a day or so and stayed home from the Easter party and my sister and law's.  We were calling and checking in with him and he was pretty much fine, just tired with a slight fever.  Then we couldn't reach him.  John went to the house and found him.  He did CPR but it was his time to be with God.  It is believed he had a heart attack.  We are thankful he passed in peace without any suffering.  He was 83 and still walked a few miles most days.  He worked as a barber (even the day before he passed) and cut the grass.  We miss him but are glad we were here in Cleveland to have some last wonderful memories with him.

Isaac seems to understand the basics of dying and such especially since my dad passed in 2009.  Jerry has been trying to figure it out and has the normal concerns for who else is going to die.  It breaks my heart.  One of the first things he said was "Nonno can cut my hair when he gets back from heaven."  The other night we saw a bright triangle of sky in the middle of a dark stormy sky (ended up with tornado warnings).  Later Jerry said, "I know that triangle light we saw was heaven...I just know it!"
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All that was written a week ago or so.  Was saving so that I could add photos but....ughhhhh no time!  Seems so busy.  We have been doing a lot of fun summer things and when we are not occupied the boys are a handfull and wear me out!

Anyways, Isaac had his testing done.  I have heard that the x-ray was normal but have not gotten the results of the EKG yet.  The pediatrician's office said they will check into it further if the results are not in by tomorrow.  If that is normal we will just watch and see if the somewhat poor endurance and complaints continue.  If there is something that shows up I am sure he will have an echo right away.  The bone age showed correct for his age.  We would hope it would show a younger age meaning he could have just hit a slump or will have room to catch up that growth he missed.  With Isaac he is still in the 30th percentile for height so it is not like he is super short for his age but it is a little concerning that he is gaining so much weight but not growing any taller.  He gained 2 pounds in about 2 weeks.  Having this go on with Isaac now too just makes this all seem so strange...this can't be real that we have all these different things going on.

Jerry has that awful test coming up and I just panic when I think about it.  I just can't imagine how I take my feeling well 4 year old and explain what we are about to go do.  If he was sick it so much easier to make an explanation about it.  It is going to be really rough and I just wish so bad there was a way out!

IGF1 results

Jerry's labs for growth hormone showed super low results.  This means that the hormone that is produced in the pituitary gland sent to the growth plates to tell the bones to grow is not being produced or not getting to right place.  I may be a little off as I am still trying to understand this all, but that is the gist of it.  The next step is another test called a stim test.  It is an awful 5 hour procedure with an IV, shots, and blood tests ( I think done through the IV).  They will give him injections of medication to see if they can stimulate his growth hormone.  If they cannot get it to reach a certain level then they will be sure he is not able to produce it.  If they do get it past the designated level then it is a bit of a mystery as to why it is not being stimulated naturally.  In either case, if they cannot find another cause, he will be prescribed growth hormone injections.  As we were going into this I was thinking maybe we don't care if Jerry will be really small and maybe we wouldn't agree to this treatment.  However, I have learned more about all of this and found out that there is a lot more to it.  This hormone is what keeps all of your organs strong and working well, keeps your immune system functioning, and gives you an appetite.  There is even evidence that this hormone can help when given to people with heart disease and failure.  There is still a lot to learn.  Jerry will also need to have an MRI of his brain to check his pituitary gland for tumor or malformation.  I am not sure how that will work out because he may need sedated and that will possibly be a risk for his heart.

Okay...so on top of all that with Jerry...Isaac showed no growth so far this year at his 7 year check up.  His last formal measurement was in September so he still has a few months.  Kids should grow 2 to 2 1/2 inches each year.  I was kind of shocked about Isaac but then when I thought about it...we really haven't changed his shoe size and he hasn't really grown out of any clothes!  I know that at the end of the summer last year he had a growth spurt because it was in Oswego and one week I could barely open the freezer door over his head but two weeks later he got clunked right in the head with the freezer door.  Sometimes the growth hormone disorders are hereditary but not always.  We will be checking on Isaac and probably start the same testing if he does not grow by September.  Also with Isaac, he has on and off complained of being tired and having stomach aches and extreme thirst when he is active.  During soccer in the fall he complained kind of a lot about feeling tired and his stomach hurting.  He told me it hurts every where from under his neck and in his belly when he is running.  I thought maybe from his asthma and also maybe like an acid reflux.  You have to understand with Isaac...it is really hard to tell with him sometimes if it is real discomfort or if he is feeling upset thinking he is not doing well at his sport.  Also, it is inconsistent.  The other night however, we were walking to fireworks and he got pretty upset saying that his chest was hurting and he was really tired of walking.  I felt his heart and it did feel like it was pounding even though he was not seeming out of breath.  I still really think he has got to be fine but will bring all this up with the doctor next week.  Jerry's heart condition does not increase the chance that Isaac will have the same thing but slightly increases the chance of family members having some other type of heart disease.  Isaac had a an EKG that was normal when he first turned 3 and the one chest x ray he had a few years ago for a cough did not show an enlarged heart.  Those are good signs but things can change.  He also has frequent headaches and said his head gets worse and he gets dizzy when he stands up.

Thanks Karen and Sue for your notes and for friends checking in with email.  It helps to know that so many thoughts and prayers are always out there for us!!

More soon....

Jerry is 4!

Wow, it has been so long!  We have been busy here in Cleveland but are so glad to be back with family!!  We are still living at my mom's.  We had really picked up our search for a house and were just about ready to make an offer but John was laid off from T-Mobile.  He is still kind of working on call and has severance of course, but is searching desperately for a new job while we put our house hunt on hold.

We all miss Oswego to some extent, but Jerry most of all.  I guess that is where big things happened for him and he is attached!  Hardly a day goes by that he doesn't talk about being back in Oswego in his house.  He wants his ally (the back of our house was on an ally) back, his friends Madeline and Maggie back, and all the places we used to go when we lived there.  It really is so surprising how often and sincerely he talks about "our house in Oswego."

My little guy is so funny and constantly entertaining.  He has an answer for everything and is always playing tricks and trying to be like his brother Isaac.  He is being trained in Pokemon and Starwars.

Jerry's birthday at Chuck E Cheese was an amazing sight!  It was like his biggest dream (second to meeting Mickey Mouse) come true!  I guess he likes mice!  He was so enamored by the entire thing and beamed the whole time.  He did every single birthday boy thing he was supposed to do without any hesitation and was so thankful and sweet.  His joining in the crowd to dance with Chuck E was my favorite.  It was all family at his party; big cousins and aunties.  He kept telling me to invite his "friends" who included Oswego friends and kids he had met at the park but never seen since.  He said "they will want to come to my party because I was treating them very friendly!"  He has grown up so much and let go of so many anxieties.  He is really just easy going and happy just about all the time.

Unfortunately, we just found out at his 4 year old well check that his weight has not grown so much.  He was at the 4th percentile in the fall for weight which we were pretty excited about.  He has dropped and is not even on the chart!  Pretty heartbreaking to find out.  He had a rough fall and winter with viruses and ear infections and was on antibiotics maybe 9 or so times from October to March.  Between the two boys and illnesses we have really still not had many full nights of sleep.  Anyways, the illnesses make it hard for Jerry to keep his weight and he had a cold at his well check and had not really been eating as good as his normal.  He is still a pretty picky eater and gets "foo" really quick.  It is funny because he sits in his chair and says "I'm foo!"  meaning full.  He had been doing pretty well with eating so we had kind of let up on adding all the extra butter to everything he eats.  We are starting that again as well as going again to the endocrinologist like we did a year ago.  If you remember, Jerry was tested and showed positive for low growth hormone and I was panicked and could not get the doctor to call me back after I was sent the result in the mail.  The doctor decided it was probably from his heart failure and not true low hormone but we should have it rechecked as well.  He is pretty active and I know he burns tons of calories.  He rode his little 8 or 10 inch training wheel bike almost 2 miles.  Of course he was really wiped out after that.  Isaac never really rode that bike besides a few pedals here and there so I never really thought it worked good.  Jerry played "Little Kickers" soccer and was a trip!  He loved every second of it and took it so seriously.  He is so very tiny but so mighty!  The first week he made another little boy cry when he pointed at him and said "don't touch my ball!"  He is usually very sweet and nice with kids but I guess he got kind of possessive of his ball.  It is a little bit assuring to see that he has a little toughness to overcome his size.  If the only reason they give growth hormone is so that really small kids don't have self esteem issues I am not sure we will have to worry.  Our appointment is Thursday so we will meet the doctor and then I am sure have to have blood tests.  Jerry will start T-Ball soon.  He is allowed to play these little sports at this age but will not be able to when he is older at around age 8.  At this point it is a worry that he would be more competitive and coached and would not stop if he needed to.  I hope I am not doing him a disservice by letting him play now.  I figure maybe something could change by that later age and if not we will deal with it.

We saw the cardiologist here in November and he thinks Jerry is doing pretty well.  He said our next step is for Jerry to have a heart cath at age 5 to check everything more closely inside and to look at any risks he is having because of the scar tissue.  This will be so amazingly difficult for John and I.  When he was 5 weeks old he had his first heart cath.  He almost did not make it and watched him gray and pale gasping for breath while several nurses gathered around.  My heart races to think of it and even though he will be going into the procedure in much better shape, it is scary.

So I had stopped writing and saved this draft.  Since then, Jerry saw the endocrinologist and had his blood tests and bone age x-rays.  The x rays were a breeze...maybe even fun...and he did so very good with his blood test.  I couldn't believe it.  He did this blowing out thing I taught him while it was done and really held it together.  His last one over the winter was not too terrible but worse than this and then the wrap on his arm afterward had to stay on forever because he was so afraid of taking it off.  This time he remembered that it is not sticky on skin only on itself.  So easy!  I am hoping to hear from the dr tomorrow about the results.
Here are a few pics!

Good-bye Chicago...

last ride on the train to downtown

Watching our last Chicagoland parade

The fountain at Navy Pier

From the ferris wheel at Navy Pier

Yes, it's a somewhat sad good-bye to Chicago as we pack to move to Cleveland. John accepted a new job with T-Mobile. It is quite a good move for us financially and for John's career. We are also happy to be getting back to family and to have some help when things get tough with illness and sleepless nights with the kids. Dates for John and I will be easier and all around it is for sure the right thing to do. Still, we will miss Chicago, our town of Oswego, and all of our friends who have been so great, church friends, and our doctors. I don't want it to be a final good bye and hopefully we will be back for some visits (please help motivate us here...invite us back!). Isaac is especially close to his friends here. We are moving on the 30th of this month. We have known for about a month but I couldn't post for a while because we didn't want the word out to Office Max before we were ready (Karen, one of our followers). Then it has been just non stop busy. Here are a few pictures of what is our last trip to the Chicago air show...at least from Oswego. We have gone most years and always have the best time that I insisted we fit it in even with all the packing we have to do! My mom is here helping us and we actually will be moving in with her until our house sells.

A little Jerry update... He has been eating really well (for him, almost normal picky toddler) consistently for the last few months. We have made a lot of break throughs recently! It is pretty evident that his heart does work so much harder than it should. He sweats so much and so easily, gets pretty pale at times, and tires easily especially with outdoor play. Here and there he is really active for longer time period, so we see that too. We have an appointment at Cleveland Clinic on November 9th. We are bracing ourselves for the usual fall and winter full of illnesses but know it will be so much better with family, especially grandmas, to help out!

Oops! I always think I can take sideways videos like pictures! Jerry was a trip dancing and watching his moves. I caught him late, but he had been looking behind him to see if he had his tushy moving to the right rythym!

So this post has taken me all week to write! And I should be packing! The videos seem to not be working for some reason but hopefully it is a blog site problem that gets resolved. Thanks for following us and stay tuned to see if we are still sane by the time the moving truck pulls away!