Joscelyn's Journey

A Beautiful Child's Journey Through Hemimegalencephaly

Joss is on TV!

on August 17, 2012

Just a few days ago, while taking an afternoon nap with Joss, I heard the doorbell ring.

I answered it, assuming that it was one of the older children being returned from a play date, but instead found a news crew from our local FOX TV News station asking if they could film a story about Joss!

Having literally just rolled out of bed, I wasn’t exactly “camera-ready” but thankfully, they graciously offered to go and eat an early dinner in the area and give me an hour to get myself and the house ready.

(Had they given me another 24 hours, I could have had my roots done at the salon. 10 minutes of the 60 they gave me was spent frantically debating the possibilities of wearing a hat in the interview!)

Here’s the first piece that ran Wednesday night:

First Interview

and the transcript from that interview:

Transcript

On Thursday night, they ran a follow-up story and interviewed Joscelyn’s epileptologist, Dr. Ki Hyeong Lee:

Second Interview

The surgeon referred to in the interview is Dr. Jim Baumgartner. “Dr. B.” is happy to remain behind the scenes and humbly refer to himself as “just the guy who cuts” but don’t let his self-deprecating manner fool you! He’s brilliant!

I love how happy and hopeful Dr. Lee is when talking about Joscelyn’s case! 🙂

Part of the reason why we’ve been willing to be so open about Joscelyn’s condition and treatment is to help spread awareness about this little known course of treatment. Hemispherectomy is a radical procedure but it is becoming more common all the time and as Dr. Lee says in the interview, it’s unfortunately not always an option that is discussed with epilepsy patients and their families.

To help even one child find release and freedom from the tyranny of seizures, I will gladly parade my graying roots before a world-wide audience! 😉

In addition to being interviewed, we’ve spent most of this week getting Joscelyn’s brothers ready for school and just enjoying everyday activities.

It’s GOOD to be home! 🙂

One of our first outings was to Starbucks to enjoy mochas and a little girl talk with my good friend Debbie.

As you can see below, Joscelyn’s appetite has certainly returned! 🙂

Joss loves our daily outings! We’re having a great time dressing her in all of the cute hats that her loving friends on “Team Joss” have donated!

And of course, her brothers are happy to have her home, too!

Next week begins a heavy schedule of physical, occupational and speech therapy appointments but thanks to your words of encouragement and support last week, I’m feeling much better about managing it all!

We are so very grateful for the amazing healing work that has been done in our little girl’s life!  Every time I look at her, I’m just amazed at what God has done! We are forever indebted to the doctors, the nurses, the therapists, our family, our friends and for all of you on “Team Joss”!

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5 responses to “Joss is on TV!

  1. deb says:

    Oh YAY.

    Hugs from Deb in NJ.

  2. Your hair looked great!!! LOL…I am serious, though!

  3. Cynthia Greenly says:

    Like I tell my kids…see these gray roots, I have earned every single one of them! Thank God you had these wonderful physicians at hand and were not one of the families that did not know about this type of surgery. Yes, the month was traumatic and I know you are watching Joss carefully, but think about if you were not one of the lucky ones afforded the opportunity. That is why your blogs are so, so vital and important. It is just one more way a family may find out about helping a loved one. Love you, Jen….Cyn

    PS-Will call you next week and would love to get out for a lunch when I get home if you are available

  4. Norma Ruttan says:

    It is amazing how that little darling can smile so big realizing how much she has endured. Of course, you and your family have gone through quite a lot. May God continue to bless Joscelyn and your family. ~hugs~

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