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


Thursday, February 12, 2009

Checking in

This week has been more than busy. Even with my calender and organizer, I feel lost. We have had dentist appointments, in-services, parties, play dates, work observations, ARDS, and doctor's appointments. I am ready for it to calm down a bit so I can focus on what should be done, rather than being pushed through the day, as if I was in a turnstile.

I was able to finally get Addison's Valentines tutu made for a party she has on Saturday. I also made her a shirt and got some accessories to go with her sassy little outfit. I can't wait to post some pictures. She has her Daddy/ Daughter dance this evening, sans daddy. Matt has been out of town all week, so Papa will be taking her. The wrist corsage and boutonniere are set and ready to go. I am very bummed, however, as I will not be able to see the Princess and her date leave in their chariot, as I have another in service this evening.

Jake has been doing really well! His personality is just outstanding! I laugh at the two twerps so much during the day. I can never wait to get them home from school and spend some quality time with them.

He did have a couple tc's this weekend. They never get any easier to watch. I have not had to use "butt medicine" though, so that is very encouraging! Although, he has had the "big ones", it seems the past two weekends, he is doing great. I think we have been averaging 0-3 seizures a day. Sometimes, if he has one, it is not even a drop. He has been having absence, or staring seizures again. Even though we want all seizures to vanish, limiting the drops is awesome, as hopefully it will decrease our er trips.

I can't wait to post some pictures that I will be taking over the next couple days, so hopefully by Saturday night I will have a moment to breathe and update everyone again.

Thanks so much for your continued prayers, thoughts and words of encouragement!

I will leave with a hilarious quote by Little miss Addi. My mom and I can't stop laughing over this. It is literally one of those things that I think about and spit out my milk or it spews out my nose, or cry in the car by myself, because I am laughing so hard.

"Papa, what are you drinking?"


"Can I have some?"

"not on my watch!"

"Don't worry, Papa, I won't spill it on your watch."

Sometimes the laughter in mothering is the recognition of the ironies and absurdities. Sometime, though, it's just pure, unthinking delight. ~

God Bless~ Christine


Julie said...

I am so happy to hear how Jake is doing! Addi is hilarious! It'f funny how kids take everything literally. I love it!!

Have fun at festivities this weekend!

andie said...

Sooooo glad that Jake is doing better. And yes, out of the mouths of babes!! Don't you just love it. Have a great Valentine's Day!!

Anonymous said...

Can't wait to see pics!!!!!
lovr ya