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 19, 2009

Happy Birthday Matt!!

Happy Birthday Matt, aka Daddy!
We miss you and can't wait to see you!

7:21, Thursday night and both babies are in bed, asleep, I am baking a birthday cake, doing loads of laundry, mopping the floor and preparing to settle down to watch my shows.
I am proud of this accomplishment, as I was woken up at 4:30 with Addison registering a 103+ fever! I then got ready for work, gave Jake his meds., a workout in itself, went to work, got ready for my sub, picked the kids and my mom back up, traveled to Fort Worth, "chit-chatted" with the neurologist for a hour:-), went to the grocery store, and still managed to feed the twerps.

Done, except for the expectation by many to blog.

By now, I am pooped and don't have the emotion to give you juicy, emotional, details of the trip to Cattle Town. However I will give you a break down.

I went in very optimistic. Noting that Jake had his , what I would think a 3 year old boy personality would be, back. Noting every detail I can remember of the past 3 months,including, seizures, "drunkeness", by Jake not us:-), high points and low points.

He, Dr. Hernandez, cut me off after a couple minutes, as Jake slammed cabinet doors, switched lights on and off, struggled for the helmet he hates to wear, and pummeled Dr. Hernandez with blows with the "reflex" wand.

The dr. simply said.."lets talk about where to go from here, it appears Topomax is not the medicine for Jake."

Hmmmm....It appeared this behavior we have gotten very used to, was indeed not normal, 3 year old boy behavior.

Climbing, yelling, hitting, throwing, peeing, was what the nuero thinks he can change?

After many questions and many answers, w e decided to try the new drug Banzel and huddle back in 6 weeks. At this time if Jake was not seizure free, we will, or at least for now, go to the Vegas nerve stimulator.

I am not quite sure if I am 100% happy with my choice, but I do feel almost 90% happy with it. I am sick of the weaning on and off drugs, the side effects, not even knowing what typical 3 year old boy behavior is, and most simply THE DRUGS!!!

I hate how mind altering they seem to be. I truly want to lock myself in a controlled environment and take everything Jake's taking and see what I feel and record how I act. It can't be good on the brain.

Wish us luck in our 6 week trial.

We head back to Cow Town April 2nd for a sleep deprived eeg and "
the next decision."

Grey's starts in 20 minutes...need to finish laundry, before I plop my self on the couch....unfortunately, I probably won't be able to stay awake for even the first half. Thank God for DVR.

When we dwell on the past, we tend to want to live there. When we dream of the future, we want to go there. Our dreams are where God paints a picture of a life waiting to be created.
~Erwin Mcmanus

God bless~ Christine

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