Stress Test, Preschool and a Violin

My sweet Noah-Boy has been having a busy week--and it's only Tuesday!  Yesterday, he got to go to the "heart doctor."  I say "got to go" because it has been a countdown for the past several weeks.  He hasn't been feeling the greatest lately, and has been asking to see the heart doctor.  Dr. Jefferies was, as always, wonderful and listened very closely to what Noah wasn't saying (he didn't say a word and was very withdrawn and very un-Noah-like) and closely to what I was saying.  Noah's stamina has decreased:  he's napping more (even asking to nap), choosing sedentary activities more frequently, needs to stop and rest during family evening walks, etc.  He also has been having a lot of chest pain, and is cold most of the time.  Dr. Jefferies asked if he CAN'T do physical activity or if he WON'T do physical activity, because those are very different things in the heart world.  My answer was that I think Noah doesn't WANT to do physical activity because he knows he won't feel good if he does.  I think he's a smart little guy who is self-modifying his behavior.  Unfortunately, he's only four.  He can't really verbalize a lot of how he is feeling.  So, we came up with a plan for some testing.  Hopefully, in the next few weeks, Noah will have a stress test (he'll be one of the youngest patients to do it, as normally the age cut-off is six) and a heart cath for them to check the pressures in the four chambers of his heart to see what's really going on in there.  He had a cath back when he was first diagnosed three years ago.  His pressures weren't great then, so I'm anxious to see what they are now. Noah also wore a holter monitor for 24 hours after the appointment.  Noah seemed happier and calmer after the appointment.  I think he felt heard and cared for.  I just hope we can figure out what is going on and come up with a plan of action to make him feel better on a day to day basis.

We woke up this morning and got to take his heart monitor off.  Last year, it was a scream fest trying to take off the electrodes.  This year, he just let me do it without so much as a whimper.  He was so brave!  (I think he liked that he got to help take my monitor off too!)  And then it was off to his first day of preschool!!  He had a great day at school.  He said he really liked Mrs. Kane and had a fun time.  I watched him gas up his tricycle on the playground several times while I was waiting to pick him up :)


On the way home from preschool, Noah asked to stop by the violin shop that is on the corner of our neighborhood.  I figured, well, why not, let's go look around.  We got to go to the warehouse across the street, and the owner brought out the tiniest violin I've ever seen for Noah to try out.  The smile on his face was just precious.  He looked so calm, so happy and so proud of himself.  When I asked him what he thought, he said "I want it."  Before I knew it, we were filling out rental papers and driving home with a tiny violin! (For only $17 a month, I couldn't resist!)  Noah will never be able to play sports, and we've talked about him choosing another instrument for awhile now.  I didn't expect to do it today, but here we are!  In the car on the way home, I asked Noah if he'd been thinking about this for awhile.  He said "Yep!" very confidently.  He keeps so much inside, and I just knew he had been by the way he lit up when he got the violin in his hands.

We had to call Daddy, put him on speaker phone and Noah played the violin and made Daddy guess what it was.  Daddy got it on the first try, even though he was very surprised!  (Thankfully Daddy wasn't upset with Mommy for my impulsive purchase.... :) )  The violin has been a big hit so far.  Noah has learned how to open the case and take it in and out, and has practiced that many times today!  He loves to try and play, and Daddy has already shown him some things and started looking for a violin teacher.


It is hard, as a mom, to walk your child through chronic illness with it's ups and downs, limitations, pain and anxiety.  It is helpful, crazily, that I have the same condition.  I can tell him what helps my heart to feel better.  I can sympathize with not being able to do everything.  He knows that our hearts are the same and I am glad that he has that and that he won't feel alone on this journey.

I am grateful today for compassionate doctors, violins to make my boy smile, impulsive adventures with my boy, medical technology and the amazing environment at 3Cs Nursery School.