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, October 28, 2009

"I am not brave today"

Most of you know that Jake is one brave boy! Much braver than I could ever be. The kid adores shots, getting blood drawn, and getting challenged.

One night during our vacation we visited an awesome little community, Baytown Wharf. It was so fun and family friendly! As we walked into the central portion of the town, Jake noticed people flying overhead, across a small lake on a zip line.

he immediately declared to us,he too was going to fly across the sky, like the others he saw. There was no stopping him! he ran to the tower and started to climb it before I could even pay to witness my kid fly above a lake.

I have to admit seeing the tower we had to climb, sent my stomach fluttering! The young men in charge of my sons fate, kept reassuring me that Jake could climb the long, spiral staircase on his own. Jake still has a hard time walking on his own, much less climbing, a 6 story, metal spiral staircase.

So I made the long voyage with him It took about two steps for me to realize that there is no way this kid is coordinated enough to make it all the way to the top. So me, wearing tall wedges and a dress, pick the child up and lug him up the staircase, all while Addison tugs at me and cries incessantly that Jake should not do this because, she is afraid! Somehow we finally made it to the top an d I tell the man that I can't walk him out because I too, am frightened of the great distance below.

So Jake turns to me with the biggest grin ever and is led to his plank!

He walks all the way to the end.

stares out for a second.

Gives me a thumbs up.

Looks like he is about to go.....

then turns and declares matter of factly...."I am not brave today!"

In my mind he is ALWAYS brave, He is my hero!
Let me tell you how relieved I was to hear those words! I was not prepared to watch him zip across a lake!

He then opted to do "virtual bungee." he LOVED it to say the least! he kept crying "Higher, higher!" The attendee was belly laughing watching this little boy, wanting to touch the sky!

Addi had a great time too. However seeing how high Jake was willing to go, terrified her, so her feet barely left the trampoline. That's my girl!:-)

Next we found a great little spot to watch the sunset.

Finally, it was time for dinner!

We had a great time at Baytowne Wharf! It will definitely bee a "must see" adventure next time we have the opportunity to get back to "The Beach!"

"How fine has the day been! how bright was the sun, How lovely and joyful the course that he run! Though he rose in a mist when his race he begun, And there followed some droppings of rain: But now the fair traveller's come to the west, His rays are all gold, and his beauties are best; He paints the skies gay as he sinks to his rest, And foretells a bright rising again."

God Bless~Christine

Wednesday, October 21, 2009

Surf's up!

Wowzers! It has been a long time since I have blogged. Although I have many things to share about our awesome trip to Florida, today's post is going to be mostly pictures documenting the wonderful experience. Our life has been crazy busy lately, so I rarely find time to get on the computer for "fun" now days.

Our week in Florida was over way too quickly and we are constantly talking about the good times we had and the thought of our next trip.

The kids and I got up every morning, while Matt fished, and had breakfast and then went for a jog. We would usually stop along the way to search for some sea shells, do a little shopping, or simply walk the beach.

We then headed back to the house and grabbed the rented bike! We then would do the same thing, just with a different mode of transportation.

Days were spent basking in the glorious sun and waves of the amazing ocean. Playing football, riding waves, or simply sitting

The rats learned to boogie board and we could barely get them to come up for air long enough to feed them.

After long mornings at the beach, sometimes the sun and the waves were a bit too much, so a afternoon siesta was needed.

Needless to say we had a blast! I will share more about the greatness of the vacation, the next time I am able to find a couple minutes. I don't want to ruin in all at once!:-)

"We rest here while we can, but we hear the ocean calling in our dreams, And we know by the morning, the wind will fill our sails to test the seams, The calm is on the water and part of us would linger by the shore, For ships are safe in harbor, but t”

God Bless~ Christine

Sunday, October 11, 2009

WISH 100- Ink Party

Last Friday before we headed for the beach, we attended the Make a Wish event, WISH 100.

It is a fundraiser to raise money to send kids on their wish. The benefit kicks off with the Ink Party. This is a time of dinner and fun, meeting wish kids, meeting sponsors, eating, drinking and having basically having a good time . The best part? It is called the ink party for a specific reason. the wish kids get to "ink" their their team's legs for the bike ride the following day!

Ink their legs with Sharpies! Jake and Addison had a blast being able to actually write on something besides paper.

Jake still doesn't believe it in this picture. he is asking the victim, if it is really ok!

However, he soon got the hang of it and could not be stopped!Here is Addison getting in on the fun. This picture is Jake's team captain's leg in the beginning stages.Jake's team actaully was the top money raiser! He got to go up on stage while they were acknowledged for their hard work, raising so much money for such a great cause! He, of course, thought he was a rock star! He hammed it up and certainly won the hearts of the crowd. I am surprised I was able to even get a shot of this touching moment, as I couldn't stop wiping the tears away. How did we get here? To qualify for a wish? never in my wildest dreams, or worst nightmares rather, did I ever think this would "happen to us." However, we are here and doing soo much better than we have been. I pray that this good streak continues! Jake is still a bit toxic, as his Depokote levels are still on the high side. Therefore, I have so much fear in lowering the medicine again. I do love the fact he is a bit less clumsy and seems to be able to think clearer, after lowering it the last two times. Jake's heart was stolen by these two lovely ladies! He is certainly smitten by them. Not only because they are as pretty as they are, but I think he may know they are the ones helping him make his wish come true!;) Christine and Kristen are Jake's volunteers for Make a Wish. He met with them back in July to tell them his special wish of surfing like Scooby Doo and swimming with dolphins. He has yet to quit talking about them!

Jake was able to meet other wish kids. This is the group that attended the event. Notice Jake is the only one wearing his t-shirt? He wants to wear it EVERYDAY! He loves it and calls it his special wish shirt!
Unfortunately, we were unable to make it to the actual ride and after party the next day, as we left super early the next day to start our beach vacation.
It is so amazing to me, the efforts people will give to make another happy.
We are so blessed to have a team sponsor Jake's wish.
So blessed to meet the kind hearted people that give their time to make Jake's wish special.
And so blessed, that the Beast has decided to back off , at least for now.
Jake is a fighter and is hopefully kicking his butt so hard that he won't want to show his stinkin' face again!
"For today and it's blessings, I owe the world an attitude of gratitude."
God Bless~ Christine
search for my kiddos using the name peters528. You can vote once a day!

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Saturday, October 3, 2009

We are back!

We are here in Santa Rosa beach!

we are tired, cranky, and ready for bed!

But we are here and so far seizure free!!

last year when we entered the house , Jake had a tc! It was a long one. One probably requiring Diastat.

so far, however we have had none and we are just loving life!

we walked in,changed, daddy got his fishing poles ready for tomorrow, and we left for Stinkys! After stinkys we sat at the beach and watched the tide roll in, swam, laughed, and looked for crabs. In 1 hour our lives were transformed!

the kids have been bribed stinkeys since last year. Stinkys and red bar are two of our favorite places to visit while here. so , check, we got our Stinky's fix, now on to the Red Bar!

I am off to bed, but you can bet that more pictures and updates will come daily. Especially the much anticipated Make a wish "ink party" and the first moments seeing the water pictures.

(I am aware tehse are awful pictures. I have yet to break out the decent camera)

I can't wait to tell you guys how much fun we are having.
and more importantly how therapeutic this is for us.

Watching or troubles go to the sea.

"The sea possess a power over everyones moods that has an effect of a will. The sea can hypnotize."

God Bless~ Christine