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, September 20, 2009

where do we begin?

Had an awesome week or so since the last blog update. Stinks I am not blogging more, but work is work, and in between work and the rats, it's all I can do to remember to breath, much less blog.

I will start with the freshest tears on my mind.

We had the amazing opportunity to go to the Roundup for Autism last night. What a spectacular event. What an amazing cause!!! Silent auction, good food ,good wine, good friends, good date night night, and amazing emotions!

I sat there and cried at the event. Cried? I am unsure why. But yes, cried. I assume, because I was dumbfounded by the event and the awareness that an event like this can lead to.

No Jake is not autistic, or on the spectrum, but hearing, watching and respecting the cause, did bring tears.

I have said it before and will continue to say it...Jake "was given this " for some reason. I am still unsure why and what our calling truly is, but i know we have some sort of part in God's plan for this damn Doose syndrome!

Pictures from the awesome event! Thanks Anna and Joanna!

Hmmmm, how do I even start this portion?!

We have been going to Oktoberfest in Addison since our Addison was in my belly and even before that. However, as she walked the sidewalks of Addison today and saw her name etched in the concrete, she was amazed! We told her that the town was named after her! So we went to our annual, beer drinking, fat eating, money spending event. This time with both kiddos old enough and seizure free enough, to recognize the true fun of it all.

Long story short...we played, drank, and ate some brats and pretzels.

We made sure to hydrate the rats.
They rode some rides.(I have edited this a million times, but dont know why it is not showing.)

and they danced the polka.

We had the twerps in the double stroller, on grass, or seated at an event table all day. We finally made our way to the face painter, as Addison BEGS to get her face painted. I swipe the rats out of the stroller to pick their poison, that is, the ink that will transform their cheeks.
Just as I do this, I hear the most God awful THUD! Like a sledge hammer hitting concrete! I am sick! The pit of my stomach still aches from that sound. I assume I was getting tickets or money to pay for the monstrosity that will take over my kids faces. I didn't actually see him hit the ground, but was right beside him.

He lay there, I throw my beer at someone, or something, and grab little Jake. As I scoop him up , I somehow grab the magnet to swipe over his vns on his chest. He continues to convulse in my arms.

I hear people screaming, talking, "ahhing", and see them staring.

I cry.

I really don't know what happened exactly after that, except, Jake I were sitting on an air conditioned floor, out of the heat, surrounded by "onlookers" and EMS.

I remember trying to assure people he is fine! He has epilepsy! Get over it and quit staring! Quit following! and quit freaking out!!
I continue to cry!

At this point I am sooo not concerned about the effing seizure, but about the hit his head took.
His head, thankfully is NOT bleeding, but has a knot and blood blisters or "blood dots" all over ,the size of a golf ball.
I cry.

Not sure why I cry and cried...not really sure. Maybe I was embarrassed? maybe I am pmsing? maybe I am sad he has not had these "day time " seizures in a while? I don't know, but I cried and I continue to cry as I type.

Lord please don't let this "break through seizure" be a sign or what we may see in the near future.
Do not fear , neither let your heart lose courage; our christ invisible helps you with a hidden hand; He tests you in order to give you HIS grace. As much as the earth is cultivated; and as much as the farmer pushes his plow, so much more will the world give fruit in his time. Even so does the great farmer, God, do with our souls. He allows trials, afflictions, suffering and distress to come to us and enter deeply into our heart, and many times we find ourselves at an impass, not knowing how to handle that or this trial, and we suffer and feel great pain. But for those who love God, He works together with them , that these things turn out for the good.

God Bless~ Christine


Leslie said...

His seizures are NOT coming back..he was out in the heat, maybe a little tired, and lots of stimulus around. I wish we could have been there to help with the stares! And on a side note, what a sexy pic! Love you!

Julie said...

Ditto Les!!! Tell the onlookers to get over it and back the eff off!!!

Heat is not good- they are not coming back!

You look amazing in that picture!