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, February 27, 2010

Darn it man!!!

Well DARN IT!!!

Since Monday morning Jake had not had a seizure!! I read from some very wise Doose mommy's on an online support group that giving OMega 3 vitamins might help with seizures, clarity, and/or overall general health. What the heck, I thought and gave it a try, it certainly can't hurt! So since I had started giving it to him, Jake has not had a seizure! Not at nap , nor during the night......until yesterday.

At school, his awesome teachers, Ms. McVay and Mrs. Chavez, reported that Jake had a pretty active nap, regarding seizures!

Damn it! that's what I get for opening my big mouth. About the same time my little guy was seizing, I was telling this same support group about our suspected success with Omega 3.

Unfortunately, Jake was a seizing machine last night as well. I think he had at least 4 maybe 5. A couple of these a considerable amount longer than usual. usually these nocturnal tc's will stop as quickly as they started, in a couple of seconds. However, last night a few of these damn things were between 10-20 seconds.

I am very glad we have an appointment to be admitted this Wednesday.
We are praying that Jake will receive as great of birthday present, as he did last year!

After last April's steroid treatment, his last drop was on his 4th birthday, April 29th.

Although, I look back at his birthday pictures and can't believe how big and swollen he was from the treatment, and still can't imagine and barely believe the life we were living last year, I am soo very thankful for how far we have come!

I pray the same gains for this year!

Leaving that blue helmet behind!

Our dreams must be stronger than our memories. We must be pulled by our dreams, rather than pushed by our memories. - Jesse Jackson

Wednesday, February 24, 2010

TAKS time

It's TAKS testing time here in Texas, which means little time for me to post , as I try to get tests in order for all my students and meanwhile try to prepare for the test itself. Novel thought, being a teacher and actually teaching.

Because, it is such a busy time of year, it is difficult for me to keep up with blogging. So here goes a quick update.

Jake will be going back to Cook's next Wed. He will be admitted for 3-4 days for another round of steroids. The hope is to once again try and kick some Epilepsy butt, and make these darn nocturnal tc's away!

While I am comfortable with where we are and our daily living. There is certainly room for improvement. Jake is still having 2-5 nocturnal tc's a day. Just when I think things are great and he won't have ANY for a couple days, they will come back longer and more intense.

Therefore, we are going to try and beat this beast down, so he and his little friends will not come back!

Wish us luck!
We have our game face on and will show no mercy!

Never give in.. never, never, never, never, in nothing great or small, large or petty, never give in except to convictions of honour and good sense. Never yield to force.. never yield to the apparently overwhelming might of the enemy.
Winston Churchill

Sunday, February 14, 2010

Happy Valentine's Day!

Hugs and Kisses from Addison and Jake!

And an out take. Jake was still recovering from a bout with a virus and did not appreciate being outside in the cold. His big sister had more sympathy than I did apparently. I was working for the shot!:-)

Since last week a bunch has changed. We tweaked Jake's meds a couple a weeks ago and it started out great. We even had a 3 day stint with NO SEIZURES!!!

However the minute I bragged about this feat, i got a call from his school and he had , had two seizures during nap.

Damn it!

That's what I get for opening my BIG , Fat mouth.

So, since Monday, we are back to having 1-3 seizures a night and 1-3 during naps at school.

Six seizures max sounds great to me for some reason; and I don't even blink an eye. I assume coming from where we have been the past year and a half so much has changed for the better, that the only way to go was up.

When Jake seizes, for the most part, he is safe in a soft bed and peacefully sleeping for the most part. Although these tc's still scare the crap out of me and I find my heart skipping several beats when I witness them, I am sooo damn thankful, we have not seen myoclonics or drops since Jake's birthday last year!

You can't have a better tomorrow if you are thinking about yesterday all the time
C. Kettering

Sunday, February 7, 2010

Geaux Saints!

I know, I know. We are typically a Dallas Cowboy loving family. However, while Jake was staying at Cook Children's for a week, the week before Christmas, a little transformation was going on!

One of Jake's favorite nurses/EMT's conducted a little brain warping. (it's very hard to say "favorite" ,as Jake adores everyone at Cook Children's, but Richard is pretty close to the top) Nurse Richard taught Jake to chant Geaux Saints! Richard is a true Cajun' and has an awesome, distinct Cajun' accent to prove it. Jake loved to hear his nurse simply talk to him with his mesmerizing twang. To this day if you ask Jake who he wants to win a football game, any football game, he responds :

"The Saints!"

So, at least for today, this house will be cheering for the New Orleans Saints!

Good news for the day!

Jake has been seizure free since Friday morning!!! No nocturnal tc's!!! I surely hope this 2 day streak lasts! (KNOCK ON WOOD)

Geaux Jake!
Geaux Saints!

Some people are always grumbling
because roses have thorns;
I am thankful
that thorns have roses.
Alphonse Karr