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


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Monday, October 27, 2008

Addison and I got a "girls night out!"

We went to my best friends daughter's birthday party and had the best time! I didn't take Jake, as I didn't want to follow him around all night like a new walker. I wanted to sit with friends and family, sans anxiety, and enjoy my daughter.

About a hour into the party I hear Addison start to cry, or scream, rather and emerge from the huge Sponge Bob jump house with her mouth covered in blood. Isn't this why I didn't bring Jake?! She bonked heads with another partier and got a big ole' gash in her lip. As scary and tense as it was, she is fine and was herself in a matter of minutes. Just my luck, though, I leave the "walking accident to happen" at home and the other angel gets hurt. Blood and all, though, I wouldn't have traded that time with Addi in a million years...we really needed that get away.

I wake up Sunday to Jake having a fever,which means seizures, which apparently concludes to bloody and loose teeth. Just when I thought this was really,truly getting better, he has a seizure and knocks a tooth loose.

"A tooth" is what I thought, until we went to the dentist today...no not one but three teeth are on the verge on falling out! Good news is besides the "mobility" of the teeth, they are real healthy and if they fall out now, early, it should cause no problems.

I was getting used to this 1-2 seizure a day thing and now that we are back to 4-5, I can't believe how that brings back the anxiety. The sound of the seizure, literally stops my heart. It sounds like a big gasp or fake hiccup, and is followed by a limp child falling, hopefully on nothing hard. He had one today as the nurse was examining him at the dentist and I thought she was about to start crying, because he had the gasp, a tremor and then shot up and was very disoriented. I have to say, that was a strange one and kind of threw me for a loop.

I wonder what I was like 3 weeks ago when we were at 10-20 seizures a day?!

The kids are starting to enjoy the Halloween week though. Yesterday we hit the "trunk or treat " at their school and had a great time....maybe that's , sugar, heat and exhaustion, what's causing more seizures?











God Bless~ Christine

3 comments:

Julie said...

I am so glad you and Addi got to come to the party- that was one of the highlights, just sitting and talking!!! Oh, sitting, talking and drinking :)

andie said...

Wish I could have been there too. It was good to talk to you though. I could tell that some of the stress was gone, at least for a little while. Stay strong.

lisa a said...

Cute costumes! They look gorgeous! Hang in there darling!