All 4 Jake: still catching up- ICE at the Gaylord

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, January 11, 2010

still catching up- ICE at the Gaylord

A couple weeks before Christmas we took my dad to the Gaylord Texan for his birthday. Every year they have an amazing ICE display. This year it happened to be based on The Grinch, one of Addison and Jake's most favorite movies.

When buying tickets we were warned that the exhibit reaches a blustery temperature of only 9 degrees! Needless to say I wrapped the kids up in as many layers as I thought would fit under the provided, lovely, blue parkas!

Because with extreme changes, we may see more seizures, I was allowed to roll Jake around the exhibit in his stroller for "medical neccesity." Good thing I did, because the child did not like the cold one bit. After participating in some fun that the display had to offer,

he then retreated to the comfort of his limo, the stroller,

and only seemed to show signs of life after a much needed cup of hot chocolate.

Addi on the other hand could have slept in the Grinch's bed, as she thought it was fabulous and the icy temps never appeared to phase her.

This was truly such an amazing work of art it was breathtaking. I was so excited to be able to share it with the kids. They had a great time and were in awe of the wonder that is ICE.

Last Christmas, this kind of venue would have been my worst nightmare and an anxiety attack waiting to happen, as all the surfaces are rock hard. I can just picture Jake busting his chin or his head, after falling from a seizure.

Although we still have some mountains to climb, in regards to seizure control, Jake is doing a million times better. For this we are blessed.

Blessed be childhood, which brings down something of heaven into the midst of our rough earthliness.
Henri Frederic Amiel