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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Thursday, September 24, 2009

OINK, OINK

Saturday night at the Pegasus Ball for Autism, the Arkansas football game was on. I was forced to "call the hogs" for the first time ever.....well, apparently I do a pretty mean PIGSOOIE because it worked!

I called the Hogs alright.

The pig has entered the house! We are now living with the swine and the BEAST!
The Peters' have been quite busy lately. Between doctors appts., a week full of in services, a sick little girl, and a boy that had a long weekend of seizures.

God is good, and a break is in the near future.

Next week we will head back to beloved Florida for a week away "from it all!"

The beast, the swine, and others may follow, but we will all be together, at our most favorite place on earth!

I have some pictures of the photo shoot, for the make a wish national campaign and some videos as well. Jake was a ROCKSTAR! He had way more patience than me, and really played the part , as the actor! I am soo proud of him!

Stay tuned for the takes of the shoot!

We, Brandy and I, are looking to change the blog up a bit, if yo have any suggestions, please let s know!


God Bless~ Christine

Sunday, September 20, 2009

where do we begin?

Had an awesome week or so since the last blog update. Stinks I am not blogging more, but work is work, and in between work and the rats, it's all I can do to remember to breath, much less blog.

I will start with the freshest tears on my mind.

We had the amazing opportunity to go to the Roundup for Autism last night. What a spectacular event. What an amazing cause!!! Silent auction, good food ,good wine, good friends, good date night night, and amazing emotions!

I sat there and cried at the event. Cried? I am unsure why. But yes, cried. I assume, because I was dumbfounded by the event and the awareness that an event like this can lead to.

No Jake is not autistic, or on the spectrum, but hearing, watching and respecting the cause, did bring tears.

I have said it before and will continue to say it...Jake "was given this " for some reason. I am still unsure why and what our calling truly is, but i know we have some sort of part in God's plan for this damn Doose syndrome!

Pictures from the awesome event! Thanks Anna and Joanna!



Hmmmm, how do I even start this portion?!

We have been going to Oktoberfest in Addison since our Addison was in my belly and even before that. However, as she walked the sidewalks of Addison today and saw her name etched in the concrete, she was amazed! We told her that the town was named after her! So we went to our annual, beer drinking, fat eating, money spending event. This time with both kiddos old enough and seizure free enough, to recognize the true fun of it all.

Long story short...we played, drank, and ate some brats and pretzels.


We made sure to hydrate the rats.
They rode some rides.(I have edited this a million times, but dont know why it is not showing.)


and they danced the polka.



We had the twerps in the double stroller, on grass, or seated at an event table all day. We finally made our way to the face painter, as Addison BEGS to get her face painted. I swipe the rats out of the stroller to pick their poison, that is, the ink that will transform their cheeks.
Just as I do this, I hear the most God awful THUD! Like a sledge hammer hitting concrete! I am sick! The pit of my stomach still aches from that sound. I assume I was getting tickets or money to pay for the monstrosity that will take over my kids faces. I didn't actually see him hit the ground, but was right beside him.

He lay there, I throw my beer at someone, or something, and grab little Jake. As I scoop him up , I somehow grab the magnet to swipe over his vns on his chest. He continues to convulse in my arms.

I hear people screaming, talking, "ahhing", and see them staring.

I cry.

I really don't know what happened exactly after that, except, Jake I were sitting on an air conditioned floor, out of the heat, surrounded by "onlookers" and EMS.

I remember trying to assure people he is fine! He has epilepsy! Get over it and quit staring! Quit following! and quit freaking out!!
I continue to cry!

At this point I am sooo not concerned about the effing seizure, but about the hit his head took.
His head, thankfully is NOT bleeding, but has a knot and blood blisters or "blood dots" all over ,the size of a golf ball.
I cry.

Not sure why I cry and cried...not really sure. Maybe I was embarrassed? maybe I am pmsing? maybe I am sad he has not had these "day time " seizures in a while? I don't know, but I cried and I continue to cry as I type.

Lord please don't let this "break through seizure" be a sign or what we may see in the near future.
Do not fear , neither let your heart lose courage; our christ invisible helps you with a hidden hand; He tests you in order to give you HIS grace. As much as the earth is cultivated; and as much as the farmer pushes his plow, so much more will the world give fruit in his time. Even so does the great farmer, God, do with our souls. He allows trials, afflictions, suffering and distress to come to us and enter deeply into our heart, and many times we find ourselves at an impass, not knowing how to handle that or this trial, and we suffer and feel great pain. But for those who love God, He works together with them , that these things turn out for the good.

God Bless~ Christine





Wednesday, September 9, 2009

big news and showers!

It has been a awesomly long week. Ending in Matt and both getting an upper respitory infection and sinus infections. Good Times!

Better us than the twerps, though!

We had a couple of big phone calls this week.

The first being:

Jake has a sponsor for his wish!

The North Texas Chapter is hosting Wish 100. This is a bicycle event here in Plano that we had planned on attending, because Jake is a " wish kid."

A couple days ago, however, I received a call at work stating that UBS raised $6,000 or more and is sponsoring Jake and his wish!

Wow! Words don't explain the way I am feeling.

Because Jake has a sponsor, we now were invited to join in on the "Ink Party." This is a pre-race party where the wish kids get to "decorate" their team's legs!

Oh the tornado will love being able to wreck some havoc on others ..."legally!"
,
Go here to check out the event details:
wish100.org

I also received a call that Make a Wish wanted Jake to do a photo shoot!

I sent them some of our pictures from the Dallas Cowboy game and they apparently thought Jake was cute, who wouldn't?!:-)

Therefore, they asked if I would be willing to get him involved in a photo shoot for the National campaign.

Hello?! Of course we would!

We went last night to the photographers casting call. She took a few pictures of Jake and now we wait to see if he "made the cut."

Such amazing opportunities!

I HATE the fact that he can even qualify to receive a wish, but since he can I am glad we are able to have the opportunity to touch others lives.

In Jake news:

His Depokote levels turned out high again. Therefore,we had to cut back on, yet, another dose of the medicine. As much as I hate side effects, seizures pretty much suck and scare the crap out of me.

Last night was his first night without his afternoon dose and it didn't go to well.

Jake was up all night long.

Not only was he up, I suspect some or several seizures.

I woke to "the sound" on the monitor. I ran in after waiting awhile, as I was sleeping and kind of forgot the
"sound" only to find him very postitcal. He was "clucking" like a or clicking his tongue for several minutes as I lay with him. This tells me that the seizure was a lot longer than the ones we have been seeing that are under 20 seconds. I suspect this one was at least 1-2 minutes. Hopefully, that was all it was. I am riddled with guilt for not running in there sooner and not knowing how long "it" really was.

I then picked him up at school, lifted him up and felt major arm twitching. This certainly scares me sooo much!! I hope we don't regress and that this is all just with drawl symptoms, as I have read to expect much like a heroin addict or alcoholic coming down from their high.

In good Jake news.....It is UNBELIEVABLE to me that he now, once again, takes showers by himself!

He was doing this before the beast entered our house,but has not in over a year.

Jake now takes showers by himself.

God Bless~ Christine

Tuesday, September 1, 2009

Better than swimming...

Addison stated "This is the best day of my life, better than swimming," after we were able to attend a Dallas Cowboy game, compliments of Make a Wish!


While at school Friday, I got a call from Make a Wish. My heart stopped! Was this the wish? Jake had wished to go surfing back in July, but nothing has been set in stone about the trip. On the other side of the line was a coordinator from Make a Wish, not necessarily granting Jake "his wish", but inviting us to an awesome outing!

They had tickets to the Dallas Cowboy's game at the brand new stadium! I couldn't pass them up, even knowing Matt had already made plans during game time.

The kids and I would go and ask my parents to join us. needless to say, it was an awesome experience! The kids have grown up routing for Da'Boys. They donned their Romo jerseys and we headed out! The stadium is ridiculously cool. It was no stadium, in my opinion, but a 5 star hotel. There were "napkins" with the Dallas Cowboy star in the restroom, as opposed to a blower or paper towels!

The kids had hot dogs, nachos, cotton candy, and bought hats as souvenirs! It was GREAT fun!

I was very worried about the game starting at 7:00, Jake's bedtime, and what that change in sleep pattern may do for seizures.

So as expected, Jake asked to go home at halftime, I am surprised he made it that long.

We were driving maybe 20 minutes when he sacked out.
We were driving about 40 when the seizure hit.
It did scare me, as I had not seen one like that in quite a while, but bless my parents, they were speechless in fright.

We soon got home and I put Jake in bed with me. He had been sleeping in his own bed, but I was a little worried "I might miss something" if he wasn't with me.

As I lay next to him feeling his breath on my cheek, I prayed.

I prayed harder than usual. I prayed for healing, for strength, and for understanding, if he may "relapse."

I lay there and prayed.

Eventually I fell asleep, but was awakened by Jake.
His face was over me.
he looked at me and said "Mommy don't worry the angels are here. They're taking care of me."

I asked where Jake, where Jake" show me!"
He pointed and said everywhere, especially my head.

I still get chills recalling this event. I still don't know if I was dreaming. Al lI know is I feel peace again.

The following morning the kids and I went on our walk.
What did we see?
The Hawk!
Addison pointed him out as he flew in the street next to us. She said, " Mommy is that Jake's hawk?"

I said, It is indeed, it is indeed.

Have I not commanded you? be stroong and courageous. Do not be terrified, do not be discouraged, for the LORD your God will be with youwherever you go.

Joshua 1:19

God Bless~ Christine


( for the hawk story go to Sept 27, 2008)