Tuesday, February 5, 2013

Where Have You Been, Mama Knoll?

I just finished a post for my cake blog entitled "Where Have You Been, Cake Lady?"  'Cause, well, it hadn't been updated in a year.  We had some things going on.

And here I am, more than a month and a few gentle nudges later.  So sorry.  I have been baking baking baking, as well as chasing my two beasts around.  We had a nice long lull in doctor visits for the month of January, and I soaked every last minute of it up.  February is an absolute juggernaut, since Parker is 9 months old and ripe for many follow ups.

(PS, if you would like automatic updates as to when I update this blog, you can follow by email now!  I added a little gizmo over yonder ----------------------------> where you can enter your email address and it will alert you to new posts.  Yay technology!)

I know you're here mostly for pictures, so let's dispense with formalities and get straight to it.  The recap of Parker's first developmental check can be found after the cuteness.

After a superhero birthday party.

Dining al fresco during our few moments of sun for the whole month.

Cheering on the Falcons.  Failing miserably.

Trying to tame Parker's hair.  Failing miserably.

Venturing to Medieval Times with Sister and her fam.
A shining example of our family motto:
"We aren't normal people.  We're the Griswolds!"

Riding the park train at the Railway Museum with EE.

Rocking some coordinating ensembles.

Keeping Krispy Kreme in business.

**A confession:  many of you are probably thinking... Hmmm that's a lot of visits to germy places for a baby who is supposed to be in RSV Lockdown.  I could lie and tell you that we have a train in our yard and a donut machine in our basement, but suffice it to say this:  For the mental health of each of the Knolls, we go on field trips.  A greatly reduced number, but field trips nonetheless.  We are careful.  We own stock in Saniwipes. And we are counting the seconds until May 1st.**

In medical news, our February Medical Gauntlet started with a chest x-ray (which we have every 3 months) and Parker's first visit to the developmental clinic.

1) The Chest X-Ray
Wretched and terrible and baby torture, according to the Pnut.  He is lucky and does not yet have to partake in the Baby Tube for xrays, and for now I can just hold his arms above his head while he lays on his back. 

We won't get the results from his x-ray until we meet with the surgeon on Feb 14th.  He is looking for signs of reherniation, which is more likely due to the fact that Parker's repair was done by patch.  He will be looking at the ECMO site to see if there are any signs of clotting in the veins that are compensating for Parker's lack of a functioning jugular on the right side. He is also looking at the mystery lung mass which has been present on Parker's right lung since birth.  The concern is that is is a CCAM (go here for medical jargon) that will require surgical removal quite soon.  It goes without saying that we are hoping and praying that this is NOT the case, and that whatever it is won't cause any trouble.  At the same time, we want it figured out and dealt with before it can start to undo all the progress Parker has made in the breathing department.

2)  The Developmental Clinic
We ventured back to the hospital yesterday for our first visit with the Developmental Clinic.  They follow NICU babies for the first 5 years of life, twice a year for the first two and then once a year until Kindergarten.  They do a full battery of assessments, physical, cognitive, psychological, etc.  At 9 months, the focus is primarily on fine and gross motor skills.

The neonatologist performed some physical exams (he continues to be a GIANT weighing in at 22 pounds and 29 inches long), followed by some time with a physical therapist.  Parker was tired and hungry during this appointment, which resulted in several loudly vocalized protests to their requests that he display his baby skills.  Still, they were able to get a pretty good idea of where he is, and graded him in the 25th percentile on a normal development curve.

25th percentile might sound low, but the fact that he's even on the curve is blessed news to us. Given that he spent the first month of his life paralyzed, there is no surprise that he is lacking in some core strength.  He spent the first week and a half lying on the left side of his head, so his natural tendency still is to look to his left.  His muscles on the right side of his neck and shoulders are tight, but he has full range of motion.  He has no problem with reaching, grasping, sitting, rolling, etc. but shows very little inclination to crawl.

At this time, they don't feel like he needs any extra therapy of any kind.  They gave us some exercises to build his core strength and stretch his back, and they would like to see him crawling in 6 weeks.

Y'all know us well enough to know that we THRIVE on deadlines and on checklists.  We love homework.  And so it begins, much to the Pnut's chagrin, that he has many many many hours of baby workouts coming his way.  The delightful thing is that I have a most willing and effective 4 year old therapy assistant who will crawl all over the house, build pillow chutes, and play endless rounds of "pop up behind the sofa peek-a-boo" with his brother.

All in all, it was a visit full of good news for us-- Parker is NOT BEHIND for his age.  He's toward the low end, and they'd like to see some progress, but he's NORMAL.  We don't often hear that word used when describing Parker, and as much as we try to treat him like a regular baby, he's not.  The doctors said repeatedly that the areas in which he is low are easily fixable, and that they, by nature of their jobs, are picky and finding even small faults that normal people would never notice.  They gave us some huge pats on the back for our part in helping him overcome the pretty big hole he had to dig himself out of at the beginning.

We are the Knolls, and we are nerds, so leaving their office with homework to finish and a gold star for parenting was about the best we could ask for.

Up next-- Synagis #4 tomorrow, surgeon next week, pediatrician the week after, and possible consults with pulmonology and cardiology in the not so distant future.


  1. Abby....
    Oh, I like messy hair in guys!! And that is an adorable picture of Parker!! ;)
    February 14. Valentine's Day. I shall try and remember to pray for good test results as I'm baking my mutt treats!! ;-D
    Good job, Parker!! I am so glad that he is not developmentally behind!! Being a CDH survivor myself, I've never ever wondered if the learning disabilities which I live with could explain why I'm a bit slow. Until recently. But, then, I was also born with other birth defects, as well. I had my scull operated on twice because of craniosynostosis. ;-/
    --Hugs and prayers!!--

  2. SO-OOOOOO happy to hear from you and have a peanut update. Prayers will be said for all those appts. to leave you with all good news! Parker is adorable and I am thrilled that you sneak out of hibernation once in awhile .... life is to be enjoyed, right? Keep up the good work ... he seems to be thriving on all that love!