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


Wednesday, February 25, 2009

Flu gone bad?

Addison still has a fever. It stinks! We were asked to go back to the dr. yesterday. because they were certain she had pneumonia or bronchitis. She cleared both of those tests. They then thought she surely had type 1 flu, as well as the type 2 she already tested positive for, negative. We were sent home, less another copay, and the advice to come back if she still has a fever in 48 hours.

We are about 36 hours out, out of Tamiflu and still have a fever, hacking cough, and now no energy.

She has at least been getting up after 3-4 hour naps and logging a couple hours on the wii,watching a cartoon or two, and then heading back to bed.

This evening, she was able to jump on Bogey for a couple minutes.

(she looks soo skinny to me after a week of not eating)

We then put Jake to bed, and attempted to play the Wii. She lasted , maybe 10 minutes, 5 of which, she played bowling while sitting in my lap.

The fever has gone down and is not quite as high, but now her energy level is shot. I would chalk it all up to being sick so long. However, I know, or have heard, at least 4 stories of kids in this area who are in th I CU from "
flu gone bad."

I hope this isn't "flu gone bad," and I hope I can be my own child's advocate and do what is best for her.

Please pray for Addison to kick this illness. She misses school dearly and has already missed her first soccer game, practice and it looks like she will miss her second practice and game as well.

She is one tough cookie, but it looks like "the flu," after a week, is finally getting to her.

ON the bright side, I can't tell you how good it feels to have our sweet boy, at least mostly, back again. His sweetness, his critical thinking, his compassion...I am seeing, again what I saw 6 months ago. The seizures are not totally gone and we still have 4 weeks to go, but right now is good.

I guess we learn to take the good with the bad? Why can't it all just happen, preferably good, at the same time?

But the salvation of the righteous is of the LORD: he is their strength in the time of trouble. And the LORD shall help them, and deliver them: he shall deliver them from the wicked, and save them, because they trust in him.(Psalm 37:39,40)

God Bless~ Christine

No comments: