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


Monday, March 23, 2009

stay tuned..

I will be on here this evening posting happenings and pictures.

As I have told a couple people lately, it is just so damn hard sometimes. Not even difficult mentally, it's probably taking more of a toll on me than I realize, but physically demanding.

Here lately, he wants to be held all the time. He wants to be held usually, because I believe, he feels the aura. Whenever I scoop him into my arms, his breathing will get heavy and he trembles, or he "drops". I can't tell you how many times he "dropped" into his plate of food this evening.

I swear all I did this Spring Break was carry him, around the house, to the car, around the grocery store, and at the park.

However, being away from him this entire, first day back to school, my arms so longed for his embrace and for his heaviness.

Just now even, he asked for me to pick him up, I lift him and continue typing:-), he sat for a minute or so, trembled, breathed heavily, and the "it" lifted and he was on his way.

You think I would have some killer arms for as much as I carry him! UNfortunately I just have tree stumps!:-)

I really would like to just try and remove all these drugs and see what would happen. Geez, it's not as if they are making things better.

We will find something that works though, even if we have to go "Lorenzo's Oil" on everyone's butt!

"I try to avoid looking forward or backward, and try to keep looking upward."
Charlotte Bronte
God Bless~ Christine

1 comment:

Julie said...

Oh Christine- that blog makes me sad and mad. I like the quote, just look up lady! I think I would want to scream at the top of my lungs from anger if I were you- having him have those drops in your arms- ugh!!!! You should do it, scream. Remember in Destin your "urge" to scream? I can't repeat it, but surely you remember.... :) Keep looking up, it will HAVE to get better soon.