Joscelyn's Journey

A Beautiful Child's Journey Through Hemimegalencephaly

Hope in One Hemisphere

on July 15, 2012

“Hope deferred makes the heart sick, but a longing fulfilled is a tree of life.” Prov 13: 12 NIV

The last few days have been an emotional roller coaster!

Joscelyn went back into surgery on Wednesday, July 12th to complete the disconnection of the diseased left hemisphere of her brain from the healthy right side of her brain. Doctors were anticipating that the surgery wouldn’t take very long but nearly 9 hours later, Dr. B said that he really “earned his keep” with her and that she ranked in the top ten of his most difficult cases! (Dr. Lee later upgraded her to the Top 5!)

Everyone felt confident that the surgery was success!

But then on Friday, Joscelyn began acting strangely again. Dr. Lee had her hooked back up to the Video EEG to determine whether or not she was still seizing and if so, to identify from what part of the brain the seizures were originating.

To say that we were devastated would be an understatement.

I even got a little snippy with the nurses and EEG techs who innocently referred to her behavior as “seizures”.

“They’re not seizures until Dr. Lee SAYS they are!” I insisted.

That evening, I broke down and sobbed on Michael’s shoulder. I cried for the pain our little girl was having to endure, cried over my continuing helplessness to save her from the seizure monster, cried over all that we had endured in the last few weeks only to find ourselves seemingly back at square one.

“Hope deferred maketh the heart sick” says the wise author of the Book of Proverbs.

I was truly heartsick that night.

The next afternoon, Dr. Lee came in (On his day off!) for the sole purpose of assuaging our fears and letting us know that the abnormal brain wave activity we were seeing on the EEG was nothing to worry about. Yes, Joscelyn is still technically seizing. She likely always will, but the seizures are now contained so those mixed-up electrical impulses can no longer spread to the healthy right side of her brain.

For the first time in her 13 month life, She is clinically seizure free!

There are no words to convey my joy!

“Hope deferred maketh the heart sick, but a longing fulfilled is a tree of life.”

Life.

That’s what we’ve been hoping for all this time.

It’s why we agreed to such a radical surgery.

We wanted our little girl to have the best chance possible at an ordinary extraordinary life!

We have hope of that now.

“Hope in One Hemisphere” as the Hemispherectomy Foundation calls it.

Joscelyn is recovering remarkably well for someone who has endured two brain surgeries in a week.

Dr. B did a beautiful job on her scar. He said he wasn’t drinking when he made it wavy ๐Ÿ˜‰ Plastic surgeons have advised him that the waviness allows the hair to cover it better, especially when it’s wet. In the picture below, you can also see the matching scar I drew on the top of one of her baby’s head. I wanted her to have a dolly that looked like her until her hair grew back in! ๐Ÿ™‚

One of the hardest parts of her recovery for me has been not being able to hold her very often. Fortunately, we’re getting more and more snuggle time as her condition improves.

Slowly, her sweet, lopsided smile is returning, too! I caught my first glimpse of it the other night when I was feeding her.

Do we know exactly what the future holds? No.

Joscelyn, as expected, does have some weakness on the right side of her body from the surgery. She will need a lot of help to eventually regain the use of her right arm and leg.

But the doctors have given us hope; a tree of life that we now water, feed and nurture with the help of therapists, support organizations such as the Hemispherectomy Foundation and the Brain Recovery Project, other hemi-families and all of YOU who are faithfully walking this journey with us!

What fruit will be borne of that tree of life; of that remotest ofย  hope, now fulfilled, that originally led two desperate parents to the unthinkable act of agreeing to let doctors remove half of their baby’s brain?

I can’t say for sure… but I can’t wait to find out! ๐Ÿ™‚

I would be remiss if I didn’t take this opportunity to thank everyone who is working so diligently to support our family in our hour of need! We are so grateful for your prayers, phone calls, cards, care packages, personal visits and donations!

Many of you have asked how you can help and we are so appreciate of your care and concern! Below are some links to some of the fundraising activities several of our amazingly kind and generous friends have begun in order to help us with Joss’ medical bills and her post-surgery rehabilitation and neuroeducational expenses:

1) A general expense fund has been created on YouCaring.com:

http://www.youcaring.com/fundraiser_details?fundraiser_id=4142&url=joscelyns

2) Our talented friend and artist Joy Price is auctioning off a beautiful handmade ceramic owl cakestand to benefit Joss!

http://www.ebay.com/itm/ws/eBayISAPI.dll?ViewItem&item=280919344303

3) North Lake Macaroni Kid, THE resource for family activities in our local area, is sponsoring a Pampered Chef fundraiser for Joscelyn! Pampered Chef Consultant Michelle Metheny is graciously donating 100% of her commission to help with Joscelyn’s medical bills! You do not have to physically attend the show to place an order. You can order your Pampered Chef Products online too at www.pamperedchef.biz/michellemetheny, then click on “our products”, Select option 1 and type in Joscelyn Dempsey as the host.

4) Also in the works is a Mary Kay fundraiser hosted by Laurie Incontrera planned for early fall and an awesome, blowout, family fun extravaganza hosted by Stephanie Clunn of North Lake Macaroni Kid in October! We can’t wait to bring Joscelyn out to meet her many loving supporters and fans on “Team Joss”! ๐Ÿ™‚

We are SO very blessed by the outpouring of love, support and generosity that has flowed from your hearts to ours! We cannot thank you enough!ย 

UPDATE: I almost forgot to include a shout out to Jenenne Valentino-Bottaro of the belly dance troupe “Fortunata“. For the next two months anyone that attends Jenenne’s Belly Dance Classes at the Family Martial Arts Center in Mount Dora on Tuesdays at 6:30pm pays only $5 per class and ALL of the money will go to baby Joss, our Warrior Princess! For more information, please call the Family Martial Arts Center at 352-383-0898.

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13 responses to “Hope in One Hemisphere

  1. Norma Ruttan says:

    Wow, people are so creative in figuring out how to help! If the Pampered Chef stays available until August, I can order a paring knife and maybe other small tools. But my available money is limited until August. However, I’ll keep praying. God bless you and yours.

  2. Frankie Powers says:

    I am continuing to pray for strength and rest for each of you; for guadance of the medical staff, and continued healing that only He our Heavenly Father can provide.

  3. Steve, Annette and Steven says:

    We’re excited to hear Joss is doing so well. Our prayers continue to be with you all.

  4. Tammy says:

    Gonna try out the belly dancing classes. I’ll probably make a fool of myself but it sounds like a fun way to help out. Glad to see her sitting up and smiling. She is beautiful and such an inspiration.

    • The belly dance classes! I forgot to mention those! Thank you SO much for reminding me!! I will add them now. Thank you for supporting us! You will LOVE the classes! They are fun and you will not feel like a fool at all! ๐Ÿ™‚ Hugs!

  5. Jen says:

    It must be very cathartic to put your feelings and the steps of this journey into words. (and you are very eloquent with those words btw!) I wish I was able to journal my own feelings about our journey in the NICU, because I think I am suffering from a little bit of PTSD, so I encourage you to keep up the good work of working thru those feelings with your beautiful blog. I saw the new pic of Joss on FB with her beautiful smile, I’m sure it made your day!!!!

  6. Carolyn says:

    I rejoice with you in results of the last week. Continue to pray for the long term treatment and for physical and emotional rest for Mama and Daddy. God grant you peace that passes the world’s understanding!

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