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


Wednesday, December 10, 2008

We are very busy prepping for Cocktails, cookies and chaos Peter's style, so I won't write much, just an update in our comedy.

Let's see first off i missed a faculty meeting today. I was at school. I even asked "Where is everybody?" While they were all being informed of school procedures, I was upstairs...wondering.

next, I sent Jake to school in his pajamas for pajama day a week early! Luckily, according to his aide, I wasn't t the only one. I still don't know if she was trying to make me feel good or not. At least he was comfortable all day! right?

On a serious note, I am pretty sure we are going to have to try a new medicine cocktail for Jake. we journey to the neurologist next Monday and the days go can not quick enough until that 8:30 appointment. Jake had a blood test yesterday to check his lamictal level to determine if there is room to , once again, up the dose. I try to be optimistic, but even yesterday he had 10 drops. I find it hard to believe we would have enough room to increase that much.

I am not opposed to changing meds, however I get terrified of the side effects. More seizures? change of personality? lethargy? loss of motor skills? loss of speech? loss of cognitive skills?

Do we really have to start the whole process over again?
The goal is seizure free. So I guess I am willing to try anything to get him to that day!

Faithless is he that says farewell when the road darkens.
J. R. R. Tolkien

God Bless~Christine

ps- I have decided to do a seizure count each day...today's= around 6, yesterday around 10


Julie said...

You are so strong. I sometimes try to put myself in your shoes and can't even come close. You will get there- the power of prayer is infinite!!!

Brandy said...

I love J.R.R. Tolkien.

You are an amazing, loving, strong, caring, uplifting, inspiring, beautiful and intelligent woman. You have handled and will handle whatever comes your way, with faith and hope. I have seen that in you throughout all of this. It is okay to question and wonder and hesitate. The Lord will keep you and guide you. Keep on keepin' on...you are a teacher to all of us!

(I fixed the time stamp...CST, now)