Monday, July 1, 2013

Medical Updates and Cuteness

My favorite thing is when I get "gentle" nudges in person or via email that I haven't updated the old blog in a while.  My response is always the same-- "I have two boys to chase around!", which is part of the reason.  The other part of the reason is that summertime is synonymous with RIDICULOUS tv programming, and perhaps, PERHAPS I have gotten sucked into such mind-numbing IQ consumers as "Pretty Wicked Moms."  After the boys go down for the night, I spend my evenings doing foolish craft projects and rolling my eyes at the TV while not being able to turn away.  The time I could be using to update this page is spent listening to such witticisms as "I had a c-section because I was too posh to push" and "My face is so thin. I am so evaporated."

No shame.  Shoot your barbs of judgment at me. I can handle it.

In actual worthwhile news, the 12 month mark for Parker meant it was time to run the gauntlet of doctors appointments yet again.  Here is the rundown:

Pediatrician:
12 month well check was perfect.  24 lbs, 32. 25 inches tall.  Nothing to report.  Always happy to have a "normal" visit.

Developmental Clinic 
Saw the psychologist and PT/OT.  The psychologist ran him through a good hour of cognitive testing, which was the most fascinating thing to see.  She had an enormous suitcase of toys and objects that she put in front of him to see how he responded.
Could he get the Hot Wheels car out from under a clear box?  Could he put the cheerios into a pill bottle?  Could he screw off the top of a pill bottle? (YES HE CAN, which is good to know in the "holy goodness, let's recheck the babyproofing" arena)  Could he find the pretty pink bracelet under a blanket?  Could he turn the pages of a book?
Yes yes yes yes yes.  Mommy starts to puff up with pride about Genius Baby in her lap. 
Could he point to the dog in the book?
no
Could he point to his ears?
no
Could he build a tower at least 5 blocks tall without knocking it over?
no
Could he say puppy?  Could he say cow?  What does a cow say?
Silence.
Mommy now starts to deflate and plan early intervention strategies.

"Well!  He did AMAZINGLY GREAT!" says the doctor.  Upon seeing my puzzlement, she laughs and says that they keep going with the test until the baby hits the plateau and stops performing. Vague memories from my EdPsych classes in college emerge.  She transfers the results to a score sheet and Parker perfectly in line for a normal 12 month old, with many skills in the 18 month range (particularly in social development, self help, and cognitive skills).

BOOM!

So very pleased.
PT/OT results were that he has caught up in gross motor, which was his area of weakness at 9 months.  Fine motor is at the low end of normal, and they wrote a script for an OT consult just to see if there needs to be any intervention.
They also wrote a script for speech because he is a mouth breather.  My pediatrician and I both felt that was a little bit strange-- of course he's a mouth breather... homefry is working with a lot less lungs than the rest of us. He babbles, he has many consonant sounds, he mimics voice intonations, he eats everything in sight, etc. etc. etc. I might go for the consult just to see what they say, but the ped said to remember that the developmental people only see him infrequently, it's different doctors every time, and that in general they tend to fall on the "overly cautious" end of the spectrum.
Have to think on that one for a bit-- our insurance won't cover speech at all (DO NOT GET ME STARTED ON THAT SOAPBOX) and our deductible just rolled over as of today.  Joys and thrills.

Audiologist
It's funny to hear, throughout my CDH community, how widely the follow-up treatments vary.  Lots of surgeons and pediatricians send these babies to every specialist under the sun for the first few years, while others wait to make referrals until the need arises.  Both Dr. Parker and Dr. Putnam are on the "we'll let you know if you need to go" side of things when it comes to pulmonology and cardiology, but Dr. Putnam is completely on board with pre-emptive strikes when it comes to hearing.  For some unknown reason, CDH babies are at SIGNIFICANTLY higher risk of late-onset hearing loss than most kids, and also higher than other kids who were on ECMO for different reasons.  The primary culprit is medication, particularly Lasix (which Parker was on for MANY weeks to reduce the swelling in his body).  The hearing loss for ECMO kids tends to manifest several years into life, with most showing absolutely no sign of loss until average age 5.  Some kids start as early as 3 or as late as 8.  Regardless, Dr. Putnam feels strongly that hearing checks at least yearly (probably twice yearly) for the forseeable future are a good idea.
I'm down with that.
We went Friday, and Parker passed with flying colors.  Totally fascinating to watch that testing as well-- they put an earbud into each ear and sent sound through, measuring the vibrations of different parts of the ear.  We then went into a soundproof room and listened for voices, rumbles, and hisses to come from all around us.  When he looked the correct way, he got to watch a little cartoon. 
Maybe I got to play too, since I was holding him in my lap.

Hooray for perfectly normal hearing!

Next up, a week from today, is a CAT scan to check blood flow in his chest.  This is in response to the dark mass that plagued his early chest x-rays, but got fainter and fainter as time went by.  It wasn't visible at all on the 9 month film, which is encouraging, but Dr. Parker wants to run this test to be sure that nothing is hiding in there that needs to be surgically removed.
Send a prayer for us on Monday-- Parker has to have an IV put in and the test itself might take up to an hour of him being strapped in and grouchy.
HOPEFULLY after that, we will be free to resume our normal schedule of summer time fun.
And trashy TV.

And now, almost 2 months later (who's the BEST MOM EVER?  *crickets*) please enjoy Parker's one year portraits taken by my aunt Nesie.  Any and all comments about his silly hat and girly outfit (you know who you are!) can be put into the comment box.  It's coincidence that the comment box looks like the garbage can. :-)




TO THE COMMENT BOX, YOU!

3 comments:

  1. Enjoyed the update. I love reading about your family. XO

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  2. Abby....
    "Pediatrician: 12 month well check was perfect. 24 lbs, 32. 25 inches tall. Nothing to report. Always happy to have a 'normal' visit.". Praise God!! ;-D
    Remember. All children learn in their own way, at their own pace, in their own time. "Special needs" or "normal" makes very little difference in that matter!! My opinion!! ;)
    Can Parker make animal sounds? Our WONDERFUL pediatrician {Yes, I am biased! But she IS wonderful!! Take my word for it!!} asked Mom that question when she was concerned about my sister's speech. "Can she make animal sounds?". Yes. Then she is fine!! My sister {Who never faced any deliberating birth defects!!} talks quite a lot now after overcoming her shyness!! {She is an adult, lest you wonder!!} ;-D
    "We went Friday, and Parker passed with flying colors. Hooray for perfectly normal hearing!". Thanks be to God!! ;-D
    Keep us posted on Parker's CAT scan results!! I am praying that everything looks fine!! Normal, even!! "Send a prayer for us on Monday-- Parker has to have an IV put in and the test itself might take up to an hour of him being strapped in and grouchy.". Will do!! ;)
    I personally like Parker's outfit and hat!! I do mean that!! ;-D
    Sorry. Long comment!! ;-}
    --Raelyn



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  3. So glad you turned off the TV and gave us this great update .... have so waited for it! Prayers are answered! Hat is too adorable ... show him the pic when he turns 21!!!! :) Stay happy Knolls .... and keep rolling!!!

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