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, October 23, 2008

We are back to the Lone Star State and reality!

We had an awesome time. I think Jake's seizures were way down. By the end of the trip I think we were only counting 3-4 a day, with a few exceptions. However, few seizures does not mean no bruises, bumps, and cuts. Jake did split his chin 2-3 times, fell down a couple flights of stairs and got 2 bloody lips. These were not seizures, though, just typical 3 year old clumsiness.

I did not realize what a mecca for seizures driving in the dark could be! Flashing billboards, car lights whizzing by, twirling police lights, and pulsing traffic reflectors. Geez, the anxiety level for me in driving in the dark was pretty high. All these "triggers" were stressing me out!
I guess I now look at all the little things in an entirely different prospective than I used to.
Anytime Jake would gasp, breath hard, or let out a sign, our heads turned around to the back seat like the girl from the "Exorcist." Thankfully though, none of these things really appeared to trigger his seizures.
However, I think I confirmed a strange trigger that I have not read about. WIND....I had my suspicions, for the longest time, when I would load Jake in the hot car and turn the air on him full blast he would seize.
One evening we went down to the beach after dinner, as the cold front was blowing in. And blowing in it was. Just being down there for a matter of 15-20 minutes, we think he had about 4-5 seizures. This is proved another day too, at the beach. It was windier than others, and he again had several seizures that day. Other than these two episodes, though, he really didn't have much seizure activity! YEAH!

The fishing!

Jake caught his fish!!
He, and Addison, actually caught many fish, jellyfish, crabs and little minnows. His "dreams" are slowing starting to come true.

Besides the fishing, one of Jake's other favorite activites, while at the beach, was chasing and feeding the seagulls.

Their next adventure...Surfing! After they caught a bunch of fish, it was time to move on. They both reported to us many times, next time they need to go surfing...so I guess we are on to the next adventure.
So here we are, back to reality, that is, finishing Halloween costumes, soccer practices, dentist appointments, teacher conferences, field trips, field days, Halloween parties, soccer games and still finding time to breath, after a week we will never forgot and one that ended all too quickly. We are so blessed to have had this opportunity to get away to such a beautiful place!

As I finish, and reflect back as to where we were with all this 8 weeks ago, or even 3 weeks ago, I bring myself to back to what had gotten us this far.... Faith, anything is possible when you have faith!

God Bless~ Christine

1 comment:

Lisa A said...

Love the pics and it's soo good to have you back!