J a k e

J a k e
at the beach in Destin

Jake's story

July 21st was a normal day, as were the days of summer before. Everything was in it's place. School days were approaching and the family was enjoying the last days by the pool, ignored bedtimes and high popsicle counts.

Then July 22, 2008 came....

Jake had his first seizure. I did not recognize it as such. It was not until he had several more of these "little jerks" and bloody noses that I thought this could be seizure activity. We were scheduled to see a neurologist on August 4th, after going through our pediatrician, however we didn't make it that far. I was awakened August 1st, by Jake in a full seizure (6 minutes long)...he started to turn blue so I called 911....

Here begins our journey......

...we were taken by ambulance to the hospital. Checked in. Released. 3 more grand mal seizures after being released. Checked back in. Sent home 3 days later. Another grand mal, this one lasting a whopping 11 minutes and taken by ambulance again. Stayed at Childrens Dallas for a week. Upping meds, changing meds and mixing meds.
Diagnosis: Epilepsy
Cause: Unknown
We have now found, through some absolutely amazing family and extended family, whom I will NEVER be able to thank enough, the wonderful doctors and nurses at Cook Childrens Hospital in Fort Worth, who are continuing to help us through this. We have had another grand last thursday, and are averaging anywhere from 5-30 seizures (jerks, drops, stares) a day. I was to begin back teaching at Apollo, but am having to put that on hold until the seizures are controlled. Jake is not able to go back to school until he is 30 days seizure free. We are still waiting for that ONE day. Please pray for our family and for little Jake. Although this is not the end of the world, it is a huge hurdle we WILL overcome. Pray for courage for Jake, understanding as parents, good doctors and for the right medicines.

Jake's mom, Christine


Saturday, October 9, 2010

looking back...

As I was sitting here reflecting how fortunate we are to receive such an amazing gift from Make a wish and telling mysef how much we don't deserve it, I happened to find some pictures from "back when."

I remember when we started this wishing process, we were told initially that epilepsy doesn't qualify.  Apparently there were others who disagreed.  They thought Jake's type and severity certainly did qualify.  "They", I think was mainly Dr. H. I am not for sure, even to this day, how Jake actually ended up qualifying, but i still remember that call telling us that Jake would be getting a wish. 

The voice on the other end said something about Jake's disability being dramatically life  threatening.  I specifically remember not hearing what was being told to me by Make a Wish, but worrying that I could not get a call in the neuro fast enough.  life threatening?! 

Throughout all this, I think I have had blinders on , as to the severity of Jake's condition.  I think the "mommy mode" took over and I didn't actually grasp what was happening to my son.

Wow, what a road we have traveled.

These are just a few of the physical beatings the beast has given him.  Unfortunately the Damn thing has also done quite a number on the inside as well.  However just like he fought through the physical pain and scars, he is climbing mountains cognitively as well.  For almost 9 months, this little man was basically in a "walking coma."  He barely had intelligible speech, drooled and could barely hold his head up on his own.

Now there is nothing this guy won't try.
He's one brave boy, that Jake.  Certainly my hero!


Almost a year and a half ago Jake was granted a wish by the wonderful people at Make Wish.
Soon Jake's wish will be coming to fruition!

Jake wished to go "surfing like Scooby Doo!" and his wish will be coming true!
Not only will Jake be surfing, but also swimming with dolphins, visting Sea World, and attending a Luau.
We are super excited to get the festivities underway.

Make a Wish has just been amazing to us!

Our experience with make and Wish and Jake's wish givers has not been just about "the wish."

They have allowed us to see a Dallas Cowboys game, build Gingerbread houses, attend Ink parties, get involved in photo opportunities, and most of all gain new friends and some amazing heros and role models for Addison and Jake.

The kids dearly love everyone involved in Jake's wishing experience, but his wish givers truly hold a special place in their hearts.

Kristin and Christine have just been amazing to us.
They have certainly gone up and way beyond anything and everything we could have imagined when first starting this wishing journey. From Christmas cookie parties , visiting to welcome Cooper, bithday ice cream parties, over flowing presents to the most loving hugs and kisses,

these ladies hold a very special place in our hearts. They are surely two amazing ambassadors for such an awesome foundation.

(Jake in the "wishing room" making his wish)

Remember today, for it is the beginning of always. Today marks the start of a brave new future filled with all your dreams can hold. Think truly to the future and make those dreams come true.
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Thursday, October 7, 2010

moments like these

Moments like these want me to cry my eyes out, scoop up my babies and squeeze them so hard it hurts.  Moments like these make me thank the Lord for what I have. 
Moments like these make me want to kick the ever living heck out of the freakin' beast!

last night as I nonchalantly, or even more so, annoyingly told Jake to go to bed and assured him I'd check on him in a minute, knowing one minute actually meant 10 or maybe even 20.

Matt and Addison were at soccer, Coop was already fast asleep.

I was "busy" doing something mundane,  probably washing bottles and getting ready for the same revolving door , that is our day.

When I finally got the chance, I turned on the hall light, so I could peer into Jake and Coop's room,without waking either of them, lay with Jake a minute, get back to my "business", all without disturbing their slumber.

As I peer in, Jake is sitting in his bed.
 His head is bowed.
His hands pointed at his chin.

I asked "What are you doing Buddy?"
He responded, "just asking God to take my seizures away."

My heart instantly broke into a million pieces.  Our little man was begging to make his life normal.  Jake has never really said he knows when he has seizures, but last night proved to me....he knows....he knows how his life has been changed.

As I sit down to type this entry and maybe even brag about how kind the beast has been to us lately by not showing his ugly face for a while, I hear it.

 I hear that God awful gasp and then the bed rocking and convulsing over the monitor.

This however, is not the "usual" 5-10 second seizure.
This one is a good 30 second doozy.
This one  makes me scatter and find a magnet and even the Diastat, that we have not had to use in so very  long.
This is one, in which his postitical is a good 1-2 minutes. 

This is one I have not seen in a long time.

Damn you beast! Just when I think you may be tired of picking on my kid, as he is fighting and doing his damnedest to kick your ass, you come and show your ugly self once again.

Damn you!

"It is at moments like these that I know my what my purpose is in life. I am here to love you, to hold you in my arms, to protect you. I am here to learn from you and to receive your love in return.I am here because there is no other place to be."
~Nicholas Sparks