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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As I was sitting here reflecting how fortunate we are to receive such an amazing gift from Make a wish and telling mysef how much we don't deserve it, I happened to find some pictures from "back when."
I remember when we started this wishing process, we were told initially that epilepsy doesn't qualify. Apparently there were others who disagreed. They thought Jake's type and severity certainly did qualify. "They", I think was mainly Dr. H. I am not for sure, even to this day, how Jake actually ended up qualifying, but i still remember that call telling us that Jake would be getting a wish.
The voice on the other end said something about Jake's disability being dramatically life threatening. I specifically remember not hearing what was being told to me by Make a Wish, but worrying that I could not get a call in the neuro fast enough. life threatening?!
Throughout all this, I think I have had blinders on , as to the severity of Jake's condition. I think the "mommy mode" took over and I didn't actually grasp what was happening to my son.
Wow, what a road we have traveled.
These are just a few of the physical beatings the beast has given him. Unfortunately the Damn thing has also done quite a number on the inside as well. However just like he fought through the physical pain and scars, he is climbing mountains cognitively as well. For almost 9 months, this little man was basically in a "walking coma." He barely had intelligible speech, drooled and could barely hold his head up on his own.
Now there is nothing this guy won't try.
He's one brave boy, that Jake. Certainly my hero!
1 comment:
I'm so glad you guys got the Make a Wish! I hate seeing these pictures, they make me cry. I hate how this whole stupid beast shows itself, and that it hurts our children! I'm thankful we're through that, and I hope you are past the worst of it as well.
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