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


Friday, December 11, 2009

The Good and the Bad and the NASTY beast!

Let's start with the bad, as it's always fun to cover it up with good!

Jake has been having a really difficult time with nocturnal tc's, night time grand mal seizures. He has been having anywhere from 2-6 a night, mostly every night. So gone are the days of even dropping him off in his room and me picking him back up when he is sleeping. He now just starts in our bed and stays there until the first crack of morning light and then the Energizer bunny is up and going!

I was ok with just the night time seizures, however, on Wednesday I picked the kids up from school to go see Santa. I was changing Jake's shirt in his classroom. I took off his filthy sweatshirt, turned to reach for his crisp,clean, Santa approved shirt and heard it!

The sound of his head cracking on the tile floor.

There he was convulsing right there in the middle of his preschool room. The place of peace, fun and learning for him.

He convulses and I feel like I just stare down at him, unable to help. It was heart breaking to me, to see his classmates, be so compassionate and innocent, as they watched their peer do "strange things" right in front of them. They of course, thought nothing of it. They were inquisitive, but when asked to go play somewhere else, they obliged and went on about their business.

I so wish , Jake was able to just move on and go about his business. He does in his own way, but for adults who witness such events, he is never the same kid in their eyes.

As I finally, got on the floor to hold my baby, he tried to come out of it. The sweet boy tried his hardest to tell me "he had a good day, and took a good nap." His words were barely audible and were made understandable only by a mommy. He then proceeded to try to speak, with a fat, slurred tongue "that he was ready to go see Santa!"

So that's just what we did!
I took my little guys to see Santa! Santa makes everything better!:-)

Although, Jake appeared alright, I couldn't muster up enough bravery to let him walk on his own, or even stand in line by him self. I guess that anxiety will never go away!

I feel like the nasty beast knows that we are trying our best to kill him with another hospital stay and steroid treatment on Tuesday. That's why he is fighting my poor little man. We will kill you beast with whatever measures it takes! You will not continue to control our lives forever!

The good!

Tuesday night we were invited by Jake's heart filled wish givers to join them for a cookie decorating party! It was a blast! The kids had so much fun. We were joined by another MAW family. The kids all got along great and had a wonderful time playing together. The kindness that comes from these girls hearts , never ceases to amaze me! We are so thankful for all they have done for our family and for wearing my little ones out(see picture below)!

Yes, he is dipping sausage in frosting, and going back for more!

straight tuckered out!

"With your eyes full of tears you see clearer;
And with the weight of the world you find strength."
-Zara Rullman

1 comment:

Julie said...

Breaks my heart to hear about his seizure at school. What a fighter though- always has been! Good luck Tuesday, we will be thinking of you guys! BTW, Addi looks so grown up in those pics!