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
*********************************************************
I laid down with sweet
Jake tonight and this is what he said to me , as he
wrapped his
small arms around me:
"Mommy, I prayed real hard tonight. I prayed that these stupid seizures would leave my head."
"I asked him for no more pokes, and no more rides in the ambulance."
"I don't like to see you cry mommy, why can't these seizures leave me alone."
"I don't want to go to the hospital again, mommy...will I have to go again?"
As a mother this is heartbreaking! Why can't I
help my son ?
I fear "they " are coming back.
I have been
extra anal asking Matt and my mom what they notice in Jake. They reassure me, he still seems great. I am not so sure. His words tonight make me feel as if he feels something coming on.
God Bless~ Christine
1 comment:
I found your blog while researching seizures on the internet. We are in the beginning stages of finding help for our daughter. My heart breaks for you, your family and Jake. It isn't an easy road, but as you stated before...this "beast" really makes you appreciate SO much more than you realize. You are in my thoughts and prayers!! Thanks for sharing your story with others.
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