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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Tuesday, June 23, 2009

Flooded Father's Day

We had an awesome Father's Day planned. We bought a bunch of food, drinks and had some friends and my dad over to hang out by the pool and eat.

Nothing like a day of sun in the company of great friends and family.

After many trips running into the house to grab something for the kids or bring more food out, I stepped into the laundry room.

That's when I saw it!

The flood of water coming from the wall and buckling our hard wood floors.

I run around through the kitchen and see the culprit. The shower and toilet in the middle of the house was clogged and the water was pouring from both, making our house it's own swimming pool.

This indoor swim area was discovered just moments after my dad knocked his tooth on the side of the pool. The knock wasn't the worst part. The tooth actually kept chipping away with every bite or even breath.

So while I am trying to call the dentist for my dad Matt is trying to call a plumber.

Last year, I believe, if this would have happened there would have been much, screaming, yelling and cursing. And we certainly would have thought it was the end of the world!

However this year, we kind of had peace with it. Crap happens, but this is minor compared to what could happen. We have two gorgeous kids, who breath, run, laugh and sing.

Several or even a couple months ago we were unsure what the future would hold for us. What was making Jake so sick and who was this beast that has invaded our house.

So as the water is piling up around my ankles , as I stare out the window at my beautiful children, who are swimming, diving, laughing and smiling, it hit me how afar we have come. We are blessed. I am so grateful and joyous for every "good day" the Lord has given us.

Even though my house is now taken over by loud, annoying fans, I will take this any day over the "what could be."


This is how the kids relax when the fans constantly blow breakers and we lose electricity. (they are watching personal dvd players)

Addison assessing the damage

The mass amount of towels that didn't even make a dent in the cleanup.


Even though it was a much chaotic day, we did manage to squeeze in some fun too.

Jake has been doing great. Well, I am not sure great is the correct word, but GREAT, AMAZING, and AWESOME compared to where we were. He still has been having nocturnal tc's. The weired thing is they happen at almost the same time every day, between 6 and 6:30 am. The doctor suggested we change his meds up a tad. He will be on the same dose and will not be adding anything new, however he takes different dosages at different times now.

He still is pretty tired, wanting to take two naps a day and is down by 8:00. His appetite has dropped a bunch, BUT aside from clumsiness, he is no where near where he was a coupe months ago.

His sentences are bright and quirky, he is fun loving, he can hold his own fork, He doesn't jitter, drool, or head drop. I can't believe where we have come from...it is truly amazing to me!

Here is an example of his clumsiness. Notice the two knots on his head, the scraps all over his chest and the bruising right over his VNS.

The scraps and bruising were caused, because the fearless fellow decided to slide on his tummy down this rock waterfall at his cousins.

The knot, because, when he slid his head hit the step of the pool.

The other knot, because when he regained his composure from the waterfall incident he dove into the spa and again hit his head.

Boys will be boys I guess. (you should see his legs! I like to blame his lack of coordination on the drugs, but truly it could very well be the grace he inherited from his mother:-))


Admiring his big cousin Wes!

and finally....this is why I have a hard time blogging lately...look what Big sister decided to do to her brother while mommy was occupied on the computer!! (little twerps :))


Being happy doesn't mean everything is perfect. It means you have decided to look beyond the imperfections

God Bless~ Christine

Sunday, June 14, 2009

All 4 Jake- High Strung Classic by Matt Peters



High Strung Classic

Well the High Strung Classic has come to a close and nothing short of classic would describe the event. Last year was our first event which was basically brewed after John and Stacy's Bailey's weddding in Houston. As we sat around talking about how many fish we could catch and who had the best skills on the water, we decided to put the proof in the pudding and form a fishing tournament. From lure names of the "SuperDog" to "CroakerSoaker", the event was meant for a group of friends to meet in Port Mansfield, fish a little, and generate memories of a lifetime. With the group we have, the goal of making memories is not hard to come by. We have seen the likes of a fake sting ray thrown at the feet of a unsuspecting opponent, bad gatorade which lead to the quote "Move your feet", a 8' shark chasing us on the boat, the heimlech, a heimlech hero, and even a sighting of the late Johnny Cash, very rare, even in Port Mansfield. But the most touching was the idea that this year's event would be an awareness to Jakes condition.
Mid April as we approached the tourney season, John called one evening and asked if he could put together an event that would bring in friends and family to help raise awareness for Jake and our family. I was completely taken back by the offer and was excited that we could add a few more open ears to the cause. Behind the scenes, John began his work of organizing not only all of us yahoo's but many others whom do not know us. He called many of his friends, co-workers, vendors, customers and family to get involved with Jakes journey. After it was all said and done, John had doubled the tournament size and organized a top notch high class fishing tournament complete with sponsors, T-Shirts, prize money for the top teams, and a catered dinner for the awards cerimony. As I look back, seeing the boats lined up at the harbor waiting for the horn, it really hit me. The effort, time and dedication to get this organized in such a short period of time is truely remarkable and a test to John's ethic. The fishing was great! Everyone caught something, at least that is what was said during the weigh-in. At the weigh-in, we found that team "Gills Gone Wild" redfish and trout had what it took as the team cleaned house for both big fish awards. Newcomers, Phil Hanusch and Jeff Phillips, had the heaviest stringer and took home the coveted High Strung Brass. Congratulations guys and hope to have you back next year. As you know, fluke things like loosing a stringer with an Eight Pound Red in the eleventh hour does not happen often. Nor will it be forgotten!!
At the awards cerimony, we all ate well and John passed out the prize money to the winners. The laughs, ribbing of teamates, and discussion of the one that got away were surrounding every table. About this time, I notice John hushing the crowd and lets everyone know that there is one more thing to give. At this point, he askes me to join him up front as the group has collectively something to give. John unrolles a hugh check made out to All4Jake. It is a donation of $5445.00 to assist with medical care expenses for Jake! John, I do not have enough words to describe what you have done. All I can say is THANK YOU!! I know life is all about AH-HA moments and this one hit me right between the eyes. The fortunes in life are family and friends. The blessings we have received since this has all began are uncountable.
I would like to say thank you to all the support, prayers, encouragement and love we have received from the numerous amounts of people in our lives.

God Bless~ Matt aka "Petey" Peters

Friday, June 12, 2009

lunch anyone?



While I stepped away from Jake for a few short minutes, Jake decided to make his own lunch.




I have a normal 4 year old!


Two weeks ago or so, I don't think Jake would have had the energy to concoct such a plan.


He was so proud of his lunch. As much as I wanted to be annoyed and mad. I couldn't help but be so proud and grateful!


The kid is coming back to us in all his mischievous ways!


It has been almost 2 months since Jake has had seizures all day long.


I believe he has had a couple, if not more, nocturnal tc's. I wish they would all just leave this house, however I am so joyful that many have disappeared. God Is Great!


I pray that this improvement continues.


I think I learned to appreciate and treasure eachday, because you don't know how many you are goign to be given.


~ Sandra Day O'Conner


God Bless~ Christine

Monday, June 8, 2009

Vote for Erin!

I posted a link a couple weeks ago about a little boy named Emmett. He suffers from the same syndrome as Jake does. If you missed it check it out:

http://www.epilepsyoutreach.org/

Erin is Emmett's mommy and she created this website to raise awareness about Epilepsy.

She has been nominated for People magazines all stars. Please go here:

PeopleAllStars

click on Cubs

and vote for Erin.

This is an amazing opportunity to raise awareness about Epilepsy and it's many syndromes.

Please share this with friends and family, and remember you can vote more than once!

If you click on Emmett's video, you can see what we witness on a daily basis with Jake.

BUTTERFLY EFFECT: Let us all spread our wings to cause a wave of awareness and concern and flood the earth with the truth about epilepsy. Make a difference; join us as we change the face of epilepsy


God Bless~ Christine

Sunday, June 7, 2009

Fishin'

I know I have been MIA, but can't wait to get back at it now that I am OUT OF SCHOOL!!! Yeah, more time for my own angels, as opposed to those I come to love and care for every school year.

I have much to report and dote on, but tonight a small little tid bit, and I promise I will keep up better.
One of Matt's best friends has made an annual fishing tourney into a awareness tournament. Matt has been down in Port Mansfield fishing this past weekend with an amazing bunch of guys.
I went to college with John and met his brother through him, obviously. At John's wedding last summer, a week or so before the "beast" entered our house, I met the most awesome group of friends and their wives as well. I felt like I knew this group of people, because they were so welcoming and kind.

Like I said, at this time, Jake was still, a normal kid.

Late July happened, and this past year has been a blur or doctors visits, hospital stays, ambulance rides, and a million different meds, however the people that love has and support us have been a constant.

Well, J.B, as Matt calls him, sponsored a fishing tournament in honor of Jake.
The boys and the group mentioned above, have made an annual fishing trip, The High Strung Classic, and this year decided to make Jake the honoree.

How amazing is that?
I have not been able to talk to Matt much this weekend, as fishing hours are absolutely ridiculous and cell phone range is iffy.
However, I can't wait to hear about the fun times that were had! This is a trip Matt most looks forward to every year and to have Jake be a special part this year is even more special.
Thank you John and the "Pasadena Crew!" I can't wait to see how it went
Here are the kids modeling the shirts that John, one of the most kind hearted men I have ever met, designed.




Those that know me know I look for or see symbolism in amazing daily acts. This weekend I saw the most amazing thing. I have never seen it before in my life. Addison pointed it out, and you had to look very closely to see it. Luckily my, sunglasses' obsessed, husband just purchased me polarized Ray Bans, or I may not have been able to notice this amazing spectacle!



This is proof that God is absolutely amazing! He was truly blessing us with great friends and great support this weekend. This is my sign! (I am an awful photag, but hopefully you can see the rainbow in mid sky.)
"My God, amazing is he
Giving you peace if you only believe,
faith is the key in time of need,
My God is amazing is he."
Deniece Williams
God bless~ Christine




Monday, June 1, 2009

Kidnapped!

I was kidnapped!

My wonderful friends invaded my house Saturday morning with coffee and bagels and instructed me that I had a hour to get ready!

They informed me we were going to spend the day at the spa!

What an amazing surprise. I still have no clue how they pulled it off, but they did. I knew nothing of the event. Matt managed to work with the girls to set everything up and even miss the Colonial (golf tournament) to stay with the kids.

I can honestly say I have never been soo relaxed in my life.


After my family bid me farewell, We arrived at a gorgeous old house turned into a Spa. It was so strange how in the middle of the hustle and bustle of Dallas, there was such a serene setting.





We started the morning with a hour massage, then we were whisked upstairs for manicures and pedicures.



The day was rounded out with a fabulous lunch and many hours sipping on wine and chatting with my dear friends.









I could not have asked for a better birthday weekend.


The time and effort that everyone put in to make this reunion is truly mind blowing. It's almost embarrassing that so much thought was put into making a special day for me.


My circle of Friends are truly therapy and I thank them for such an amazing and wonderful day. You girls give me strength! I am so proud and lucky to have you in my life. I am inspired by your acts of kindness, your sincere words of wisdom and seeing the outstanding women and mothers you have become!

I am so fortunate to have my circle of friends.

Matt was out of town for my birthday and our actual anniversary ,so he surprised me with these gorgeous flowers sent to my school.


To say the least, this year's birthday and anniversary were like no other.

Jake news

Well Jake has given us a scare lately.

I had noted last week that something was "not quite right." He slept the majority if the, drooled, and complained of his throat hurting.

I took him to his pediatrician and all the tests, including a strep culture cam back normal.

The nuero ordered a blood test. The blood test came back with very elevated Depokote levels. This was concerning because Depokote could have a side effect of liver damage.

We were then told to go get more blood levels to make sure his liver was processing the medicines correctly and that he wasn't in toxicity.

I just heard back from the nuero and apparently everything is fine! Phew!

As much is that is wonderful news, I still am unsure why he is acting this way.

Something is not right and I feel helpless that I can't help him.


"Two are better than one; because they have a good reward for their labour. For if they fall, the one will lift up his fellow: but woe to him that is alone when he falleth; for he hath not another to help him up." ~ Bible: Ecclesiastes

God Bless~ Christine