Happy Friday

Posted on August 24, 2012 by Andy Chrestman

The wait for Sarah’s mommy to decide on which photos to use for the “Kohl goes to the beach” post continues indefinitely.  In the interim, Kohl would like to wish everyone a Happy Friday.  He would also like to make a special shout out to his Aunt Allison who turns 40 today and officially earns the coveted title of Cougar.

In celebration of Aunt Allison’s recently-attained Cougar status, Kohl wore the following outfit.

The tie says he’s all business.  But the lack of pants shows that he also likes to party.



Posted in Musings | Leave a comment

What A Day

Posted on August 6, 2012 by Andy Chrestman

Dear Faithful Readers (all 47 of you),

I apologize for the delay in posting on the blog.  Very soon, there will be a post about young Kohl’s first trip to the beach.  I am just waiting on Kohl’s mom to select which pictures to post along with it.  That means, you should expect to see it some time around May of 2014.

In the interim, however, I thought I would report some very promising news.  Today, Kohl had his first EEG since leaving the NICU in February.  Naturally, we were extremely anxious about the results because an EEG is one of the only objective tools we have right now to measure his development.  EEG stands for “electroencephalogram,” and it measures the brain’s electrical activity.

Here is a picture of a very cooperative patient preparing to have his EEG done:

It is odd that while Kohl can barely withstand bath time and wardrobe changes, he does not seem to mind having 23 nodes attached to his cranium.  Go figure.

But I digress.   I am thrilled to report that in today’s EEG, Kohl’s background activity was completely normal.

To put things in perspective, his first EEG, on his second day of life, was nearly flat.  It was terrifying. He steadily improved throughout his stay at Children’s, but his last one before being discharged was still not normal.  Nevertheless, the doctors at Children’s were surprised that his background activity even improved as much as it did given the severity of his brain injury.  So we were thankful for what improvement we got.

But this little guys seems to be making it a habit to surprise everyone, almost daring you to doubt him.

We are so thankful for today’s wonderful news, and we wanted to share.  Please keep praying and sending positive thoughts our way.  I can say, without reservation, that they are working!



Posted in Musings | Leave a comment

Developmental Updates

Posted on July 3, 2012 by Andy Chrestman

Kohl is a little over a week away from hitting the 6-month mark, which makes it a good time to give a developmental update.  Developmental milestones are based on what most babies can do at different stages of their first year of life.

Parents use developmental milestones to make sure their kids are developing appropriately and to give them a sense of what to expect down the road.  For us, they are our primary means of assessing Kohl’s neurological development.  So far, he seems to be mostly on track, which is incredible news considering his background.

Our main goal right now is for him to start reaching for objects because that is the one milestone that eludes him.  Part of the reason is his tight muscle tone. One of the common side effects of a neurological injury like his is tight muscle tone, particularly in his hands, which he tends to keep clenched up. It can also be an early sign of cerebral palsy. We do daily stretching exercises with him to help loosen him up and he gets to wear hand braces that make him look like he was either injured at the X-Games or has abusive parents.

Once he figures out that he has these tiny little things called hands at the end of his arms, it will open up a number of doors.  For instance, it will bring his relationships with Marty the Moose and Sophie the Giraffe to a new level of intimacy.  He will be able to appreciate the gargantuan size of his Pop’s nose.  Most importantly, he will be able to put Mr. Binky back in his own mouth at 2:38 am, then again at 4:19 am and then again at 5:06 am.

To ensure he develops to his maximum potential, he has two physical therapy sessions and two occupational therapy sessions per week.  He is enrolled in the Early Steps program that fortunately survived the most recent round of state budget cuts.  He has two therapists with Early Steps and two therapists at Children’s Hospital.  In all, he has a veritable Dream Team of caregivers, and we consider ourselves very fortunate.

Sometimes joy comes out of sorrow.  After what happened to Kohl and what we continue to hear from doctors about the likelihood of developmental delays and/or disabilities, every smile is that much sweeter, every milestone achieved that much more special. Yes, we worry every day about what problems Kohl might have as a result of his brain injury.  Yes, we get angry and ask why.  But one of the many lessons this tiny little sage has taught us is that every moment spent worrying about the future deprives you of enjoying the present.

And so far, we’re enjoying the ride.



Posted in Therapies | Leave a comment