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, November 21, 2009

quick update

Matt took Jake to the Neurologist in Fort Worth on Wednesday. I had called a day before with questions and concerns and gave Matt a big list of things to ask.

Dr. Hernandez was more worried about Jake's nocturnal tc's , than apparently we had been. He scheduled an appointment for December 17th. If Jake is still having seizures at night we are to be admitted to the hospital. We had inquired about another IV steroid treatment , as it seemed to be our saving grace last April, when Jake was averaging 100-200 seizures a day. The child was having more seizures than he wasn't. We were admitted to the hospital for about 8 days and given the iv treatment. Since that day Jake emerged from the 9 month "walking coma" he had been in for so long.

The seizures lessened, the drooling let up, and the little man's personality returned to us! After a couple weeks we even were brave enough to take of the darned blue helmet!

So I am very torn about the thought of another iv treatment. I saw firsthand how this sort of treatment can help and am very anxious about how it may improve even his current condition. However, this will entail a 4-5 day hospital stay. Which will release us a day or two before Christmas. I am nervous for the side effects, the aggression, and the swollen appearance that comes with steroids.

I want him to be able to remember this Christmas as a very Merry one. Last years was riddled with knots on the head, stitches and seizures.

We do trust the Doctors at Cook's very much and know that they truly have the best interest of our little man at heart. So whatever decision they make, we believe it will be the best for our Jake.

"The first time you're broken, you don't know you'll be healed again, better than before."
Sharon Olds


lisa a said...

Wow! Hope this goes smoothly for you!

lisa a said...

Jokes on me huh?!