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


Monday, May 18, 2009

Thumbs up

Not quite sure why I am even bragging, but here goes!

Since our last doctors, Jake has had only a few seizures.

We went to the nuero 2 weeks ago tomorrow(we go back on Wed). Since then Jake has had only 6 tc's.

This may not seem like something to praise. However the "big ones" occurred over a course of 2 days and in the very early morning hours. Three one morning and 3 the next.

Jake has not had any other seizures to speak of.

His quality of life has GREATLY improved!

Unfortunately, we are now seeing what a four year old, spoiled, coddled, BOY, truly acts like.

As much of a pain in the rear he is, I wouldn't trade these past 2 weeks for anything.

He swims, runs, rides his bike, and even walks around the house without the blue helmet, that is now too small for his poor swollen face.

We can see our little mans blonde locks!

We can see his cheeks.

We can see his eyes with out the shadow that is usually cast down from the brim of the blue beast.

We can see Jake trying to fit in and be the four year old he has dreamed of!

It is such a huge change not being a prisoner in our own house.

The fear that comes with caring for a child who has seizures is huge.

It is such a burden to take him anywhere. The fear and the anxiety that comes with waiting for a seizure to happen, a drop to occur, and the glances, giggles, and questionable looks is miserable!

Besides the fact when we have ventured out, it is simply easier for me to carry Jake or push him in a stroller.

As you can imagine, people must think I am the strangest mom, to be carrying around a 40 lb boy everywhere.

Although I wish this was the end of THE BEAST, I know that Doose is a very difficult disease to control.

I am hopeful this is the beginning to the end and certainly pray for many more weeks like this come. However, I also know that it could indeed get a million times worse than where we have been.

Nonetheless, I am so very grateful and blessed that God has given us the past 2 weeks!

To see the joy in his eyes and the fear alleviating for Matt and I , is enough to last a lifetime.

"but those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint."
Isa 40:31

God bless~ Christine


Brandy said...

Awesome!!! Such good news. Fingers crossed, hands folded, on bended knee...praying for this to be the beginning of a new and wonderful chapter. xoxoxo

Lori McKinley said...

I am so happy that things are getting better! Those times when we can see even small glimpses of our little ones without all the seizures are truly a blessing. And people will always judge and look down on us for the "odd" things we have to do (like carrying 40 lb. kids around)...it's only out of ignorance and an unloving spirit that they do so. Praying for them was the only thing that kept me sane sometimes! But God has given you the ability to handle this burden with the love and care that only a great parent can supply. We continue to pray for you!

LeRoyFam said...

Tears come so easy reading this...it is like reading my own thoughts! As sad as it is, it's just comforting to know that someone else understands the hell we go through with this horrible beast! (I know the looks, I'm pregnant too so people think I'm especially crazy - and Hewitt's really big for his age - the same size as my 6 year old!) I was so thrilled to read your post about his seizures lessening and even being gone for a little bit. It's fantastic news and I'm praying it lasts!