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, September 9, 2009

big news and showers!

It has been a awesomly long week. Ending in Matt and both getting an upper respitory infection and sinus infections. Good Times!

Better us than the twerps, though!

We had a couple of big phone calls this week.

The first being:

Jake has a sponsor for his wish!

The North Texas Chapter is hosting Wish 100. This is a bicycle event here in Plano that we had planned on attending, because Jake is a " wish kid."

A couple days ago, however, I received a call at work stating that UBS raised $6,000 or more and is sponsoring Jake and his wish!

Wow! Words don't explain the way I am feeling.

Because Jake has a sponsor, we now were invited to join in on the "Ink Party." This is a pre-race party where the wish kids get to "decorate" their team's legs!

Oh the tornado will love being able to wreck some havoc on others ..."legally!"
Go here to check out the event details:

I also received a call that Make a Wish wanted Jake to do a photo shoot!

I sent them some of our pictures from the Dallas Cowboy game and they apparently thought Jake was cute, who wouldn't?!:-)

Therefore, they asked if I would be willing to get him involved in a photo shoot for the National campaign.

Hello?! Of course we would!

We went last night to the photographers casting call. She took a few pictures of Jake and now we wait to see if he "made the cut."

Such amazing opportunities!

I HATE the fact that he can even qualify to receive a wish, but since he can I am glad we are able to have the opportunity to touch others lives.

In Jake news:

His Depokote levels turned out high again. Therefore,we had to cut back on, yet, another dose of the medicine. As much as I hate side effects, seizures pretty much suck and scare the crap out of me.

Last night was his first night without his afternoon dose and it didn't go to well.

Jake was up all night long.

Not only was he up, I suspect some or several seizures.

I woke to "the sound" on the monitor. I ran in after waiting awhile, as I was sleeping and kind of forgot the
"sound" only to find him very postitcal. He was "clucking" like a or clicking his tongue for several minutes as I lay with him. This tells me that the seizure was a lot longer than the ones we have been seeing that are under 20 seconds. I suspect this one was at least 1-2 minutes. Hopefully, that was all it was. I am riddled with guilt for not running in there sooner and not knowing how long "it" really was.

I then picked him up at school, lifted him up and felt major arm twitching. This certainly scares me sooo much!! I hope we don't regress and that this is all just with drawl symptoms, as I have read to expect much like a heroin addict or alcoholic coming down from their high.

In good Jake news.....It is UNBELIEVABLE to me that he now, once again, takes showers by himself!

He was doing this before the beast entered our house,but has not in over a year.

Jake now takes showers by himself.

God Bless~ Christine

1 comment:

Donna said...

Found your blog through another blog I was reading - just wondering if you have thought about trying the ketogenic diet for seizure control. We just started the diet a couple weeks ago and are seeing some results - we're not completely there yet, but I know it takes time. My son is also on Depakote. Will keep you in our prayers for the beast to stay away. You have a beautiful family. Stay strong.