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


Thursday, December 17, 2009

Great news!

Dr. H came in this morning. I was still dumbfounded and shocked by yesterdays news that I did not want to say anything or ask any questions, because I was simply afraid of the answers!

So , he walked in and I stood.
I stood waiting for news, before I could ask and get answers I didn't like to hear.

However, I did notice that as he walked in he had a slight smirk. This was huge on his excitement scale, as he is always very stoic and professional. The grin was a bit of foreshadowing for me.

Because I stood, for what seemed like hours to hear something, he started to inform me of the findings from the previous nights veeg.

He stated plain as day:
It looks so much better! He saw about 50% improvement from the veeg just the night before!

50%?!! to me that is huge!!

Obviously, I was very pleased with that news and have been on a high ever since those fantastic words entered my ears. A high, that even Jake's awful moodiness and temperament from lack of sleep, side effects of steroids and missing home, could not bring me down from.

Our boy is a fighter! I pray that tomorrow will bring such sweet words as well.

Jake had a fun day today.

He had some music therapy

decorated a Christmas tree for his room:

and even saw some sites around the hospital:

We usually take a couple walks around the hospital each day to see what is going on, get our legs moving, and simply to get out. Tonight was extra cool....
Tonight we were decorating Jake's Christmas tree that Leslie brought over for him. She added some candy canes to add a little extra pizazz to the tree's limbs. Jake put a few canes on the tree then said to me matter of factly:

"I want to go give these to the other sick kids."
So as we walked tonight, Jake took his box of candy canes and passed them out to people he saw wishing them a Merry Christmas!

This was definitely a touching moment, as not only I teared up by his actions, but so did some of the receivers of his candy canes. I am unsure if they were weepy at the sight of a sick looking boy, being wheeled around in a wagon with "things" stuck to his head, or if his actions were simply that touching. But none the less, I think the kid captured the true spirit of Christmas.

He never ceases to amaze me.

"Let us remember that the Christmas heart is a giving heart, a wide open heart that thinks of others first. The birth of the baby Jesus stands as the most significant event in all history, because it has meant the pouring into a sick world the healing medicine of love which has transformed all manner of hearts for almost two thousand years... Underneath all the bulging bundles is this beating Christmas heart."
-- George Matthew Adams (The Christmas Heart)

1 comment:

Leslie said...

I wouldn't expect anything less from Jake!