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


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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

4 comments:

Leslie said...

I'm so sorry C and especially Jakers! He is in our prayers every night...God will carry you through you just have to keep the Faith! Love you!

Mandi said...

I can never read this without crying. Love you guys. Can you please search for me tomorrow so I can get a hug before your trip?!

Ps...I e-mailed leslie pinson yesterday. I filled out an applicatoin to be a volunteer for Make a Wish!

Fawn said...

Oh, Christine, this is so unfair! I'm so sorry. :(

Have you guys talked about trying keto for real? I know you have a huge over-filled plate as it is...

Wendy said...

Christine,

Our family will continue to keep Jake and your family in our prayers. I am Desiree's mom. She was a student aid in Jake's 4 year old class. Desiree' adores Jake and learned a lot of life lessons from him. She is in college now and her roommate has epilepsy. Knowing and learning from Jake has taught her to have compassion for this girl. She knows she needs her rest and is very careful not to wake her. Most roommates would not go out of their way to keep quiet and try their hardest not to disturb her. She even wants to make a curtain to hang by the computer desks, so that the light from the computers does not wake her. She listens to her and told her about Jake, and the girl has really opened up to her. Jake has helped a girl who lives hundreds of miles away and he does not know her. He has already touched so many lives. I hope you all enjoy your trip. May God continue to wrap his loving arms around your family.