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


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Sunday, December 14, 2008

I got a piece of mail this weekend that was certainly an "eye opener" to me. Well, besides the millions of doctor, hospital, and er bills, that is.

We received a copy of the magazine "Neurology Now." I can't describe the feeling I got when I flipped through the mail and saw it. I am uncertain why now, after months of battling the demon, was it just now "hitting me."

I held the magazine for , what seemed like forever, just staring. I then decided it wasn't really ours and I needed to check the address and put it back in the mailbox. However, right there on the label it read :

matt peters
xxxx xxxxx
xxxx, Tx.

Wow! it was ours. I couldn't simply stuff it back in the mailbox labeled "return to sender"
thinking about this, this magazine is holding so much symbolism in our lives right now.
As much as I want to believe this isn't really happening to us, I can't simply "return to sender" this episode in our life.

When I finally got the courage, I focused on the headlines and the pictures. The front cover had a big picture of Greg Grunberg. it said "Epilepsy Heros" "son Jake raise awareness about epilesy." Wow again, a little more irony. I felt as if the magazine was "talking to me!"

I sat down and actually read all the articles. When I got to Greg's, from Heros, story I secretly wanted to hear word for word about my Jake and his son was a difficult case too, but now is completely fine. However, this is not how the article read. It was a great article though, and listed several sites in regards to epilepsy awareness.

epilepsyadvocate.com
epilepsy.com
talkaboutit.org
bandfromtv.org

All of these are wonderful sites and I hope you can take a moment and visit them to research epilepsy and educate yourself about many of the facts and myths of epilepsy.

We venture to the neurologist tomorrow. I compare this feeling to the much anticipated monthly doctor visits for a newborn. I literally count down the days.

I am unsure what to expect or what i will hear, but I am ready for anything.

Jake is certainly battered and bruised. I took him to the clinic Friday night after his bath, as his chin looked awfully red and pussy. It was confirmed that he had an infection, and it could possibly staph. S o we are now on antibiotics and creams to fight the infection.

Saturday morning we weer not shocked, unfortunately, to witness another gashing of the chin.

Saturday evening, my sister in law was sitting on the couch, teaching Jake how to play the Leapster. Right at this moment, Jake has a seizure, fell forward towards her, and then sprang backward.

backward onto what? a part to his Thomas train set. he fell precisely on the corner of it. As I lift him up, blood literally "spurts" from the back of his head. We BOTH mutter something and rush him to the kitchen for paper towels, as Addison gets big towels. The blood doesn't seem to let up, so we are certain we are going back to the clinic. Lisa begins packing Addison and getting things together.

Finally the blood stopped.

I assessed the damage, and luckily, thankfully, it was merely a little dot. Geez, for as much blood as we saw, i thought for certain he would have a big cut. nope, just a little, tiny, dot looking, blood mark.

Things are looking up!:-)


"To have faith is to be sure of the things we hope for, to be certain of the things we cannot see. It was by their faith that people of ancient times won God's approval." [HEBREWS 11:1-2 BIBLE]

God Bless~ Christine

Seizures:
Thursday- about 5
Friday- about 3
Saturday- about 8
Sunday- 2!!

2 comments:

Brandy said...

Thank you Christine for those websites. I will definitely take a look. We could add them to the page, if you'd like. Let me know. I am sorry you had such a sobering moment when you received the magazine. I am sure that was/is tough. But as you know....he CAN get better and it WILL be better. Time and meds. Hang in there. Much love
Brandy

Leslie said...

All I can say is I love you and stay strong!