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, January 26, 2009

endings and new beginnings

This past week, we sadly mourn the passing of Slugbug. The poor crab left his shell, he knew as home, and ventured for the search of a new home. Addison and I tried to coax the poor "bug" back into a new home and into his old home, however Slugbug, apparently did not have the strength. We found him the next morning trying to climb a pyramid to meet his creator in the sky.
After a memorial surface for the poor Crab he went home to the big guy in the sky via a Walmart bag and a green city trash can.

RIP Slugbug...You will be missed.

We have had a fun and eventful week and I will save the best for last. Addison went with Papa to see Annie the ballet. She loves going to see musicals, plays and ballets. She probably even more enjoys the time with Papa, as the world is hers when they are together. She can do no wrong in his eyes and can get whatever her heart desires..well most of the time. It is Matt and I who have to "pay" for several hours or even days after an outing with Papa, or any Grandparent rather. She can conquer the world when she is with them!

Granny and Poppy sent Addison and Jake some Western attire for Addison's Western day at school. Addison LOVED her get up. Jake was impressed with his as well, but chose to be the naked cowboy.

Jake went shopping for a New big boy bed, yet again. It seems the infinite search for the perfect bed, at the perfect price that will last us as long as this child is living in our house, is near impossible. However, we finally decided on one at The Cat and The Fiddle that is pretty cool. It is not the price we would have liked to pay, but I guess beauty comes with a price...right? Waiting the 6-8 weeks for delivery could be excruiating. The child no longer sleeps in his bed. He begs for us to make him a bed on his floor, or ventures to our room in the early morning hours. This could be the longest 6-8 weeks we have known.

New Beginnings?

Jake has had.....drum roll....... no more than...drum roll......3 seizures since Friday!! Of course these are ones that we have seen. He could have had more, but we saw no more than three! Friday we only logged a couple, however he had weird behavior, that I am really unsure about. Therefore, I will not count Friday. Today he had his first seizure free day at school!!!

I praise God for the small things. I find myself feeling giddy inside and bearing a "perma-grin!" I look back and can't believe, truly, how many seizures he was having a day...as little as a week ago ...we were having more than 15!! To have 3, or less, all weekend I am beside myself!

“Nothing has turned out as we expected! It never does. Life's under no obligation to give us what we expect. We take what we get and are thankful it's no worse than it is.”

God Bless~Christine

1 comment:

reidster said...

Congratulations! I know what it's like to have a seizure free day or almost seizure free day. When you don't have seizure control it is like a big tyrant is living in your house ordering everyone around. I will pray for Jake. Be steadfast and persevering! -Reid McKinley