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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Monday, September 22, 2008

We had a pretty uneventful day, thank goodness, so I decided I would do a Peters' Family FAQ's.

Before I start, I will say our seizure activity has been down, however he did have a "big one", tc, grand mal, at 2 am. Our Addison is also the "allstar" this week at preschool, so we are enjoying the doting on Addi time. She gets to bring a movie and snack one day, pictures of her self and /or family and a show and tell every day. The timing couldn't be better for me, as I feel as if she has been passed by the way side waaay too much lately.

FAQ:

1. Are you married or Where's Matt?

YES, I am married to Matt...and yes we are fine! Fortunately and unfortunately he is in a business that feeds off of loss of power, ie..hurricanes. Fortunately, because he gets a lot of work during hurricane season, unfortunately that hurricanes like Ike, Gustave and Katrina have to hit us at all. When all of this started Matt took A LOT of time off work. After our last hospital visit, he went back to work, but fell sick. A couple of weeks and several antibiotics later he felt better, and was able to eat again, but all the while he was up at 5:00am and back home at 6:00 or later and 10 pounds lighter. Welcome Gustave and Ike and 20 hours day. Matt is currently in Houston, living in a trailer, trying to give some major gas stations, hospitals and schools power so the city can some what get back to normal.

2. Is it hard?

Of course its hard. Besides the fact that my son, 5 weeks ago, was more than normal, and we were swimming 8 hours a day, eating ice cream, going to movies and playdates, I am also now a single mom. Yeah its hard, but this is what we signed up for. Matt is working EXTRA hard for his family,our lifestyle, and hospital bills, but most of...because that's who he is. My kids are more than blessed to have a daddy that goes above and beyond because GREAT is never good enough....We have met many obstacles and goals in the years we have known each other, but the strive for better is always there! That's what we want to teach our kids. God Bless Matt and God Bless the people he is trying to help during this devasting time. We miss you!

3. How's Jake?

Jake's great. Besides too many stitches in the past few days, he is fine. He is finally adjusting to his limits, seizures, and over controlling parents. He doesn't know anythhing other than "when I play football next year." "when I play baseball next year" "When I play hockey next year." The kid is a sport-a -holic!

4. Is there regression?

Of course....the toddler bed is now in our room, he now wears "Pull Ups" again, and he wants to be carried EVERYWHERE! The bed in our room, I have to admit, is all me. For the first couple weeks home he was safe and sound in his own room ,but I was getting serious milage running back and forth between his room and ours all night long. Enter the noise monitor...sorry no peace of mind. Enter video monitor...great, but I found my self logging no rem's as I stared at the darn monitor all night long. So I drug the darn bed into our room, hoping Matt wouldn't notice!:-)
Jake still uses the restroom on his own and even when having seizures would not lose control of his bladder, but about 3 weeks ago he started urinating more often when seizing, re-enter pull ups. He wears them all day, but 98% of the time I throw away dry diapers at the end of the day, as he still goes to the restroom his self in the commode.

I know there are many more questions,but I need to get the twerps to bed. Thanks for reading about our "ever changing life." If you have a FAQ please ask!

God Bless~ Christine

1 comment:

Julie said...

Ha! Did Matt notice the bed in your room? I think I would go as far as dragging him into MY bed! Glad to hear about the uneventful day.

Many of my friends are asking about you and praying for you!

Hang in there lady.