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, October 10, 2008

It's been crazy around our house lately. Matt's back out of town, we have guests coming in town, we are gearing up for a vacation, the big nuero appt., and trying to figure out how and when I will get back to work.

We are able to mix in some fun between all the chaos that is: running Addison to and from school, keeping the house in some what decent order, being on constant seizure, wood floor walking, chair climbing, potty going patrol and managing to get the kids fed and to soccer practices.

We went bright and early to the Pumpkin patch yesterday! I made sure to get there when it wasn't too hot ,as heat, hunger and sleep appear to trigger Jake's seizures. The kids, Babi (pronounced Bubby )and I had a great time! The highlight for Jake was definitely the tractor pulled hayride.I think Addison loved everything evenly. She did not stop running or screaming in delight the whole time.

Last night, as I am finally getting used to this "Jake sleeping in his own bed thing," and figuring out it is possible to catch a least a couple winks of sleep, instead of worrying about him all night, I heard a blood curling scream at about 3:00am. You can imagine my terror. Initially I thought is was Addison having a night terror, as she often does. I then could tell that's not Addi. I try to unwrap myself from all the baby monitors that are sharing a pillow with me, run down the hall, just in time time to meet Addison running my way. She is saying "It's Jake, It's Jake!" I am terrified now, as I had leaped out of my bed and checked the video monitor I did not see him in his bed. "No blood, No blood, No blood." is all I can manage myself to think or say.....I finally, after what seems like 10 minutes for a distance of 30 feet ,make it to the kids jack and Jill bathroom....there is Jake laying on the floor. At this point I don't think I am breathing, and am already ordering Addi to get her flip flops on because we have to go get more stitches.

Luckily, though, after a very thorough head, lip, and chin check, there is no blood!

The cushioned toilet seats, circa 1965, that we bought after out first set of 8 stitches did the job!!! Jake walked away with a rather large red and tender spot on his check from the fall, but NO GASHES and, Thank God, no stitches!!!

Love the padded toilet seat!

Now to only figure out a way to keep him out of the restroom at night, but also give Addison access in.

God Bless~ Christine

1 comment:

Julie said...

Here's to padded toilet seats!! I hope you were able to go back to sleep :)