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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Tuesday, July 20, 2010

I've come to realize...

that seizures suck.  They have completely consumed my life, even when I don't really realize it.

As I was listening and watching Jake on the video monitor today, as he took a nap, it hit me.  This crap is NOT normal.

 He seizes, I watch.

Jake seizes at least once a night and at least once during the day.  Yea! that's good news, right?

Well, in whose mind?  I have totally and completely come to think that this is 100% normal of a 5 year old kid.  I think I have even convinced myself that most , if not all kids, suffer from seizures. 

I used to run to Jake's room when  I heard that dreaded gasp of air, as if it's his last breath, and then the sound  of the bed vibrating , as his little body convulsed uncontrollably.  Now, I simply watch the monitor and count to see how long the damn thing lasts.  Sometimes, though, I just listen and count until the noises, snorting, heavy breathing and smacking end.

I have come to realize that this is NOT normal! and for today, I am going to sulk and say it's not fair.

Seizures suck!

I hate the way I can remember every sound, facial gesture, and movement of that dreaded day , August 1st, when I saw Jake's first "big" seizure. 

I hate:

The sight of his lips turning blue and me trying to breath life back into them.

The words the 911 operator was telling me to try and help my baby boy.

The fact that I had one phone to my ear with the 911 operator and one phone on the other ear trying to explain to Matt what was going on , as he was hundreds of miles away.

The sounds of whirling ambulance, fire truck and police car sirens and realizing they were coming to our house.  (Addison still can not stand the sight of emergency response vechilcles or sirens, even though she was not awake, she connects them to that dreadful day)

I can still so vividly remember all the fire and policemen storming in our house, not worried about breaking or dirtying something with their big  and massive gear.

The way they rushed to Jake's side as he still seized, gave him oxygen and poked him trying to get a line started.

To this day I have always said that that first seizure was 12 minutes, however I have come to realize, it was at 12 minutes when the Emergency response team actually showed up.  Jake seized all the way to the hospital.

After the team entered the house, the policewoman told me to grab my purse, I am at a loss as to what actually transpired next.  I do remember me asking the emt's, as I exited the vehicle and Jake's seizing finally stopped, and as they pulled his gurney out, if the sirens were on?

why in the hell would I ask that? and that is basically the response i got from the young men saving my son.  they looked at me as if I was off my rocker, which I probably was.  they then assured me they were on, as were the sirens police cars that followed.

From that moment on, I don't remember much.  I don't remember much of the past 2 years for that matter.  I think we have all been in survival mode.  I have "loosened" up a bit, as Jake has improved soo much, and for this I praise the Lord.

But, I have come to realize that this is not normal. 

the way I stare at baby Cooper  and can't relax as his eyes roll back into his head as he enters baby slumber, the way all babies do, is not normal.

the way my heart skips a couple beats every time his arms twitch from baby reflexes, is not normal.

the way i hold my breath , as he stretches his precious baby arms to stiffness and I wait for them to relax, is not normal.

Today, I have come to realize, that this feeling of cinder blocks sitting on my chest day after day is such a burden.  I am ready to lose this fear and anxiety and finally Kick this Beasts ass, because it is not normal.

I have never strived to be "just normal," but these days this is exactly what I pray for...to be normal.

It has been just about 2 years since the day I noted his first seizure, a twitch that sent a smoothie flying through the air of Costco..  I certainly did not think we would still be  battling this beast 24 months later.

Epilepsy is an easy cure, give the kid a pill and everything will be fine.

I have come to realize that nothing is as easy as it seems.

Once you choose hope, anything's possible. ~Christopher Reeve

3 comments:

Mandi said...

know that your family is always in my prayers. i ADORE that boy of yours and hate that stupid beast. i hope you know how much your family is loved!!!

let me know if you need a breather from the kids one day. :)

Fawn said...

Oh, Christine! I know what it's like to watch the babies *totally normal* twtiches and jerky movements and wonder, "Is that normal?"

Epilepsy is so unfair.

Any further thoughts about giving keto a try? Does anyone think it would help with the nocturnal TCs?

Anonymous said...

Thank you for this post. I am sure it was not easy to write. My son will be turning five next month and has been battling this beast for 20 months. He has four different types of seizures and has anywhere from 40-50 per day (that we can see!) He was developing just fine up until the onset of seizures and now has severe cognitive delays. Some days are better than others, and at times its all I can do to stay afloat!!! Thank you for your blog and for giving others hope in the mist of this storm. Many blessings to you, your amazing Jake and the rest of your family. Jaden's Mom........