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.