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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We have been very busy the past couple days and only going to get busier. Matt's out of town, we had Addison's Christmas program last night, ice and snow, teachers to bake for, Santa to see, and parties to cook for.
It seems like it is always "rush, rush, rush", and then nothing. Why can't it be spread out a bit? In all seriousness, though, I love it. I love baking and cooking and planning, even if it means I am up way past my 8:30 bedtime.
Since Jake's nuero. appt. Monday and adding the new drug to his "cocktail", we have had a dramatic increase in seizures.
That kind of stinks.
I have a call in with the neuro, though, and am waiting to see what his insight is on all this.
Tuesday seizures = close to 10 (or more)
He gives strength to the weary and increases the power of the weak. Even youths grow tired and weary, and young men stumble and fall; but those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint. - Isaiah 40:29-31God Bless~ Christine
1 comment:
OH C - let me know what the doc says...is that normal, to have an increase at the start of a "new cocktail"? I know this has GOT to be so frustrating. I have said it once, I will say it again - you are a true inspiration to us all.
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