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
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Hugs and Kisses from Addison and Jake!
And an out take. Jake was still recovering from a bout with a virus and did not appreciate being outside in the cold. His big sister had more sympathy than I did apparently. I was working for the shot!:-)
Since last week a bunch has changed. We tweaked Jake's meds a couple a weeks ago and it started out great. We even had a 3 day stint with NO SEIZURES!!!
However the minute I bragged about this feat, i got a call from his school and he had , had two seizures during nap.
Damn it!
That's what I get for opening my BIG , Fat mouth.
So, since Monday, we are back to having 1-3 seizures a night and 1-3 during naps at school.
Six seizures max sounds great to me for some reason; and I don't even blink an eye. I assume coming from where we have been the past year and a half so much has changed for the better, that the only way to go was up.
When Jake seizes, for the most part, he is safe in a soft bed and peacefully sleeping for the most part. Although these tc's still scare the crap out of me and I find my heart skipping several beats when I witness them, I am sooo damn thankful, we have not seen myoclonics or drops since Jake's birthday last year!
You can't have a better tomorrow if you are thinking about yesterday all the time
C. Kettering
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