All 4 Jake: It has been over 20 years

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

Tuesday, July 14, 2009

It has been over 20 years

...that I have been attending Kaboom Town in Addison on the 3rd of July. When we moved here almost 26 years ago, my family and I always headed down the road a stretch to watch the magnificent show. Then as we grew older, we would go with our friends. Matt and I started going together when we began courting over 15 years ago.

We have now made the tradition of taking our new family.

Addison, Jake, Matt and I usually head over with a picnic dinner and save many spots while we wait for friends and family to join us. It is always a great time and through the years our "camp site" is ever expanding.

Then August 1st happened of last year. Many things have changed since then. One of them being the limits we are willing to push Jake to.

The Texas heat is well above 100 lately. Heat is a trigger for Jake.

Jake has been going to bed around 7:30 or 8:00, right after he has his medicines.

Fireworks don't start until 9:30.

Matt I and thought it was in Jake's best interest to sit this year out of the Kaboom Town festivities.

Papa came and got Addison so she wouldn't have to miss the wonders in the sky. They arranged to meet up with the usual crowd that greets us there and Papa would deliver her back afterwards.

Meanwhile, Matt and I hit the fireworks stand for Jakers. He knew it was that time of year to honor our soldiers fighting for our freedom, parades, swimming, food and fireworks.

We loaded Jake up with "poppers", food, and fun.

And just as expected, the kid hit the hay before 8:00.

Although, this year was a change, change is not always bad. Jake had a great time with us and we felt much less anxiety than we would have, having him push his limits in the Texas heat and long night.

We surely would have loved to have Addi with us as well, but are very fortunate to be blessed with a close knit group of family of friends that also take into consideration her need for normalcy.

Here are some pictures of our much fun filled July 4th weekend.

I do wish things could have been different and more like they were last year.

However viewing these pictures today and staring at the screen expecting the blue helmet to be back on his head, I am Thankful.

I am thankful that blue helmet is tucked away inside his closet, at least for now.

I am so thankful for how far we have come.

I am so thankful for our support system.

And I am so thankful for the many "good things" that this beast has brought us!

It has brought us an understanding, a thankfulness for each day, and a MUCH better appreciation of what is important in day to day life!

"If you concentrate on finding whatever is good in every situation, you will discover that your life will suddenly be filled with gratitude, a feeling that nurtures the soul."~ Rabbi Harold Kushner ~

God Bless~ Christine

By the way don't forget about Erin Leyden at the AllStar game tonight!

http://www.suntimes.com/lifestyles/health/1663008,CST-NWS-epilepsy13.article