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


Sunday, May 3, 2009

Mac and Cheese if you please

Steroid boy is OBSESSED with mac and cheese!
Not your normal Kraft macaroni and cheese, but the good fat filled, homemade, simply easy mac and cheese that his mommy makes.

Not only does he want it LITERALLY, for breakfast, lunch, dinner and snacks in between, but he even wakes in the middle of the night asking for it.

I wasn't going to mention it, until now, after almost 3 weeks of his little obsession.

I even held out and was not going to buy the "elbow macaroni" and Velveeta cheese. However, Matt went to the grocery store for the BIG weekly trip and I whispered "get him elbow macaroni and Velveeta, and whipping cream."

I was going to "sneak" in a meal or two for Jake.

The little rat saw Matt unpacking the groceries and saw the elbow noodles and FREAKED!!
I kid you not the child ran around yelling "Daddy got me macaroni!" The weird part is I buy a different box of noodles, so how he saw the bag of noodles and knew, blew me away.

The child then proceeded to sit at his chair waiting for the mac and cheese to be ready. Through the boiling processing, the draining stage, and the melting and mixing phase.

He then ate almost 3 times more than Matt did.

Besides the fact that the roids have made him "rage," and bloated, the sweet angel can not get enough to eat!

I just wish they continued to stop the seizures, as they did in the hospital.

There is no love greater than the love of food.

George Bernard Shaw

God Bless~ Christine

No comments: