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


*********************************************************

Monday, April 26, 2010

again?

Ugghhh Again with the numerous tc's?

Last night/ early morning Jake logged 6 nocturnal tc's again.  He had been doing so great!

I seriously wonder, if he gets so worn out over the weekend that his little body just can't handle it and the seizures are the only way it knows to cope?

Who knows, but looking back, he was on a pretty good run last week as well, until Tuesday.  He had about 6 tc's on Tuesday and then improved again, with little to none, until last night.

Ugghh it gets so frustrating. Just as I think things are getting better, or I am starting to make connections between activities and diets and seizures, something like last night happens.

I am ready for this whole mess to leave our lives just as quickly as it entered.

It's the little things I miss.  The things we have once so taken for granted:

signing him up for  sports

keeping him up late, past 7:00, to watch movies, work on puzzles, or simply enjoy the great Texas weather

rewarding him with sugary treats

date nights (not many feel comfortable enough to stay with him.  It has been over 18 month since we have gone out just the two of us! I take that back, in October The kids stayed with my parents over night, as Matt and I attended the Roundup for Autism...hmmm how many months ago was that?  How far along am I?:-))

leaving the house without a suitcase full of medicine and "emergency medicine"

If the beast was to leave today, I would not miss:

THE ANXIETY

The phrase "we can't because of Jake" or  always telling Addison later b/c Jake can't, or Jake can't have that and it completely affecting Addison as well.

sharing our bed

the daily medicine administration

the total and complete over anyalzation of EVERY little thing he does.

The feeling of embarassment or the need to apologize for  his EXTREME ADHD and behavior brought on by seizures

wanting to back out of every playdate, as I dont know how he will act

and mostly..... having to explain to people why I have no desire to be social and "hang out," as being a working, mostly single, as Matt travels so much,
pregnant mother, of a child with special needs, gets quite exhausting!

(I will not miss the high school drama and gossiping behind my back that goes with the above either)

The lists could go on and on....

For right now though, we are good.  I just simply can't wait for it to be GREAT!

  Jake, and Addi, have come so far in this journey and I am certain it has made them much stronger people.  I am amazed with them daily.  They have so much compassion, empathy and understanding.  Those traits can never be taught!  and I am certain they would not  possess them, had the beast not come for a visit.  They are certainly my little hero's.  I continue to learn from each and every day.

"We must accept finite disappointment, but we must never lose infinite hope."


Martin Luther King

3 comments:

Lisa said...

I completely understand how frustrating it is to see progress and then watch as it all seems to vanish.

Ugghhh is right.

Hang in there :)

kwind said...

I know you don't know me, but I don't know how you find the strengh some days. (or keep from pulling out your hair one strand at a time) Jake's story humbles me everytime I read your blog. No body deserves this disease!! I work with kids that suffer seizures daily and HATE it. Take time for yourself!! AS a nurse several of us babysit kids we know that have special needs. It's not much time for their parents but it's much deserved!!

beth said...

Hi, my name is Beth(owner of Paciugo SAL). I have been your blog all morning and so deeply taken by it all. In case you are not aware, there is a friday nights program at Custer Road United Methodist church in Plano where they have nurses on duty and volunteers ready for special needs. May want to check that out for a much needed date night...best to you all and the upcoming arrival.