We've had a rough go of it here the last few weeks (and it's all relative).
We've lost our afternoon nap (Simon). Started night sweats (Simon again). Started to use language like "It hurts" but can't say where or what- just repeat over and over again (Shimmy Shimmster). Been cranky, crabby, and lost deep deep in the ocean of frustration (Simon and Mommies).
In an effort to rule out any heart related concerns and stay in the simple parents-of-a-Four Year Old Land, we moved our cardiology appointment up from August 1st to June 4th.
Jaime and I were not that worried and our 'gut' was saying that this was not heart related. Still, when there are enough things to add to the list, we don't have the privilege of just 'chalking it up'. So off to see Dr HunkyPants.
After an EKG, and an Echocardiogram, we met with Rosenfeld to discuss what might be going on.
Turns out, Simon is exhibiting one of those unfortunate developments in pediatric Cardiomyopathy
.................He is 4. He is so 4 it's unbelievably typical.
There is nothing going on with his heart other than IT'S EVEN STRONGER!!!
His shortening fraction is up to 32 (from 28) and his ejection fraction is up to 59 (from 55) since February!!!
So the pissant behavior is normal. The cranky, crabby, selective hearing, interrupted sleep, testing boundaries with direct eye contact, and even night sweats and redness around his G-tube (because he won't stop sticking his FINGER in it, not infection!) are because he's FOUR. A perfect TYPICAL 4 year old.
AND, his heart is stronger.
Just like his temperament, will, and voice.
Awesome.
No really. Awesome.
I think the expressions on his face in the following pictures says it all.
We've lost our afternoon nap (Simon). Started night sweats (Simon again). Started to use language like "It hurts" but can't say where or what- just repeat over and over again (Shimmy Shimmster). Been cranky, crabby, and lost deep deep in the ocean of frustration (Simon and Mommies).
In an effort to rule out any heart related concerns and stay in the simple parents-of-a-Four Year Old Land, we moved our cardiology appointment up from August 1st to June 4th.
Jaime and I were not that worried and our 'gut' was saying that this was not heart related. Still, when there are enough things to add to the list, we don't have the privilege of just 'chalking it up'. So off to see Dr HunkyPants.
After an EKG, and an Echocardiogram, we met with Rosenfeld to discuss what might be going on.
Turns out, Simon is exhibiting one of those unfortunate developments in pediatric Cardiomyopathy
.................He is 4. He is so 4 it's unbelievably typical.
There is nothing going on with his heart other than IT'S EVEN STRONGER!!!
His shortening fraction is up to 32 (from 28) and his ejection fraction is up to 59 (from 55) since February!!!
So the pissant behavior is normal. The cranky, crabby, selective hearing, interrupted sleep, testing boundaries with direct eye contact, and even night sweats and redness around his G-tube (because he won't stop sticking his FINGER in it, not infection!) are because he's FOUR. A perfect TYPICAL 4 year old.
AND, his heart is stronger.
Just like his temperament, will, and voice.
Awesome.
No really. Awesome.
I think the expressions on his face in the following pictures says it all.
Seriously?! That look of disdain.
Nose Picking
And determination- "I will fit this whole thing in my mouth!"
5 comments:
Laura and Jaimee,
Excuse my adult language, but when Allie turned four, we nicknamed it the fucking fours. Twos were fine, threes were a dream, but fours were a nightmare. Sorry you have to deal with it, but glad that that is all it is.
Amy Levenson Schroeder -- IB
What amazingly good news! For him, I guess not so much for his mommies. . .but like you said it's all relative.
~Dawn from KC
Whoot!!!!!! Congrats on the follow through and relief...now buckle down and try to enjoy the ride :)
hi guys!
this are amazing news..... sorry that you have to deal with the MORMAL behavior of a 4 year old but at the same time I'm really happy that you have to deal with the NORMAl 4 year old boy!!!! YAY!!!!
Today we completed our second day at home with Mili and everything is going well.... we are seeing dr. R thursday......I'll keep you posted
Adrian
hi guys,
So happy to hear that you are just deling with a "Normal" 4 year old.... seriously happy that that is the only thing going on!!!!
Message to Simon..... keep it up big boy! keep driving your moms crazy!!! and keep growing strong!!!
Love,
Adrian
PS: we just completed our 2nd day at home with Mili and everything is going well.... We are scheduled to see Dr. R on Thursday.... I'll keep you posted!
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