Thursday, December 13, 2012


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!

Wednesday, October 10, 2012

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.  " 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...

Tuesday, October 2, 2012

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. to bed.

Sunday, September 30, 2012

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.

Friday, August 31, 2012

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!!

Tuesday, August 28, 2012

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!

Tuesday, July 31, 2012

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.

Monday, July 30, 2012

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 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.

Tuesday, July 24, 2012


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!

Saturday, July 21, 2012

getting by...thankful for fun days!

First...I keep finding really bad mistakes/typos in my 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 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.

Friday, July 20, 2012

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!

Wednesday, July 18, 2012

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!"
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!

Saturday, July 7, 2012

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. 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 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....

Monday, June 11, 2012

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!