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


Sunday, November 8, 2009

a week late- oops

Geez, I notice the trend on all the blogs recently....I promise to get better about keeping up! I must do it. Life is just whizzing by and you're missing too many great things!

Lets go back a week and let me introduce you to Sir Jake and Lady Addison!

Halloween, as always, was an awesome adventure! The kids, and Matt and I, had a fabulous time!
So completely different from last year.
Last year we did have a great time, don't get me wrong, however circumstances were completely different.
Last year at this time Jake was having multiple seizures a day. He was drunk on drugs, and needless to say the anxiety level was quite high! Jake cruised the streets last Halloween in a stroller. When we allowed him to get out, one of us was right there either holding him, or close enough to him to catch him when he fell. We worried about drops, about crowds, about excitement, about strobe lights, and mostly about him getting over tired.

Although, there was a little anxiety this year, in regards to his stability. Halloween 2009 was much more relaxing than the year past.

We headed out quite early to a street a couple blocks away that is notorious for their extreme decor. The area is riddled with police officers controlling traffic and crowds, kids running to and fro, and ghosts and ghouls a plenty.

Jake was so enamored by the the look
of everything he wouldn't even carry his own treat bag. I overheard once even telling a candy giver, "No Thank You!"
The kid was so excited to be able to run without too many restrictions he could care less about the candy.

He slayed dragons.

and even fought Kings.

My heart fluttered as I watched him run, laugh, sing and play! My little man has come so far and I am so proud of him!

We had an awesome Halloween 2009!

Every day I look at something different around the house that "takes me back." Whether its the overflowing bowl in the cupboard with the numerous failed drugs that only made my son sicker, or the calendar noting the seizures and the timeline to wean on and off a new drug.

Many times it is his pull ups that he still loves to wear. I can't believe my 4 year old went back to diapers after not wearing them for so long.

The highchairs that kept him confined to his seat to eat so he wouldn't fall over and the baby monitor that sits on my bed side table, so I will be able to hear even the faintest sound.

Our little man has come so far! I am so proud of him! Many days I can't believe where we have been and I can only imagine where we will go. I can only pray that we Will never go back to where we were before!

"God moves in a mysterious way
His wonders to perform;
He plants his footsteps in the sea,
And rides upon the storm."

God Bless~ Christine

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