we are Quackish

The good news, hmmm...maybe, is that we see the nuero Thursday. But not until we have a sleep deprived eeg. A sleep deprived eeg means Jake should stay up until 11 tomorrow night, he usually sacks it out at 7:00, and he needs to wake around 4:00 am and not nap until the eeg. This for a kid who at 9:00am is usually begging to be rocked for a nap.

This could be a challenging 48 hours.

However, I am hopeful we can get answers or treatments at the Thursday appt.

I am ready to get rid of these drugs.

Geesh, he is on so many drugs and they are not helping anyway...what's the problem with pulling them...we will have seizures either way.

Please pray for good news or at least hopeful news Thursday!

Through him you believe in God, who raised him from the dead and glorified him, and so your faith and hope are in God.

1 Peters 1:21

God Bless~ Christine

Peaceful gone bad

So last Wednesday we had some storms roll through North Texas. The kids and I lit some candles, whipped out the board games and the Wii, and watched the rain "make bubbles" in the pool. We love to watch the bubbles form on the pools surface as the constant, peaceful and tranquilizing sound of the rain relaxes us all.

As we are staring out the window, reminiscing on the day and what dreams may come, Jake has a seizure. No big deal in our life, right?

He's wearing the gorgeous helmet.

No sweat.

Nice try.

On his way down Jake's gums grab the window sill and Jake continues to the floor.

Jake already has 2 or 3 black teeth from similar incidents, and has already lost his frenum because of a recent stint looking out the window.

Since I am so near, when I go to Jake there is still no blood. He isn't crying "that bad" so I pick him up to investigate. Welcome BLOOD.

I lift his lip and there swinging, as if there is a breeze, is an inch of his upper gum. I am thinking, "We have been through this before , they can't stitch gums at my favorite after hours care clinic, and I hate trips to the ER.

I then email this picture to friends, asking their advice. Going as far as emailing and calling my friend who is knee deep in happy hour to ask her and her friends advice.

I explain to everyone that the gum is torn from the tooth line and even if they wanted to sew, there would be nothing to sew it to.

I am advised, however to hit the er.

I hesitate and call my after hours clinic and they say they can look at the massacre and then advise if we need to go to the er. Awesome news to me. I will be out 35$, but that is better than hours in the emergency room and less 100$.

They confirm that it is a nasty wound and they think it needs to be stitched BUT there is nothing to stitch it to.

We leave with Rx's for topical antibiotics and proper care.

Here continues the exciting Peters life!

As if the initial cut isn't bad enough, he has "re opened" this lovely would about 3 times over the weekend.

Yummo!

You win some, you lose some, and some get rained out, but you got to suit up for them all.

J. Askenberg

God Bless~ Christine

I am being stalked

This song by Jason Marz is seriously stalkng me!
Addison and I love it and we can jam out to it any where and anytime. I swear any time we go and get into the car it is the first song we hear.
We heard it on the way to school today.
We turned it waaaay up and danced, sang, and were definitely in the moment.

This song has always been such a pick me up. How can it not be? It is so fun, the beat is amazing and the words are pretty cool too.

I probably look more into the words and even turn and twist them from what they are supposed to be. To me "I'm Yours" is me giving it God.

I'm yours....Show me the way!

Trust in the LORD with all thine heart; and lean not unto thine own understanding. In all thy ways acknowledge him, and he shall direct thy paths.(Proverbs 3:5,6)

God Bless~ Christine

stay tuned..

I will be on here this evening posting happenings and pictures.

As I have told a couple people lately, it is just so damn hard sometimes. Not even difficult mentally, it's probably taking more of a toll on me than I realize, but physically demanding.

Here lately, he wants to be held all the time. He wants to be held usually, because I believe, he feels the aura. Whenever I scoop him into my arms, his breathing will get heavy and he trembles, or he "drops". I can't tell you how many times he "dropped" into his plate of food this evening.

I swear all I did this Spring Break was carry him, around the house, to the car, around the grocery store, and at the park.

However, being away from him this entire, first day back to school, my arms so longed for his embrace and for his heaviness.

Just now even, he asked for me to pick him up, I lift him and continue typing:-), he sat for a minute or so, trembled, breathed heavily, and the "it" lifted and he was on his way.

You think I would have some killer arms for as much as I carry him! UNfortunately I just have tree stumps!:-)

I really would like to just try and remove all these drugs and see what would happen. Geez, it's not as if they are making things better.

We will find something that works though, even if we have to go "Lorenzo's Oil" on everyone's butt!

"I try to avoid looking forward or backward, and try to keep looking upward."

Charlotte Bronte

God Bless~ Christine

spring break in Pictures (warning..pic overload!)

First night, Geisha bar and lounge(really not what it sounds like!)) It is a Yummy Japenese Teriyaki grill. The first time we went Jake literally stood by the fire exit, stating, "It's a fire Drill!"

He idd MUCH better this time, even bellying up to the bar and watching a little Sports Center on the flat screen.

The kid Knocked out Daddy's steak and lobster and even did it mastering the chopsticks!

We then hit the Dallas Arboretum, as it is an annual trip of ours. I wish I was a better photog. I pretty much butchered these with unwanted shadows. BUT, it was fun all the same!

We also meet our dear Tracey for lunch at Mockingbird station. The easiest way to get there was probably driving, but I wanted to make it an adventure, so we left a hour early to meet "Super T" by train. W e had a great time and it was so good to see Tracey and her baby bump!

waiting for the train

It's here!

We flew Kites:

we played a great game called "The picnic Game" I learned about it from another blogger, and Granny and Poppi were able to find it and send it to the kids. It's great fun, this coming from someone who HATES board games and movies!

We did a little shopping (like my Walmart shirt?)

and the kids actually got along for 5 seconds, and long enough to play bride and groom, however Addison was a little annoyed there were two brides. Thank goodness Daddy is out of town for this one. What the pictures are not showing, is that a couple minutes after this, therewas football put in Jake's belly and he was proud to announce "I'm having a baby, touch my belly!

We also played mucho hours of the Wii. Love me some Wii. Tracey and I were laughing about a moment, that was actually truly a "wake up" moment for me. Jake's in the stroller, doning the oh-so-gorgeous-don't look at me- blue helmet, T and I are saying our goodbyes and Addison yells "seizure!" I din't flinch, as this is what Addison does, however T kind of looked at me, I then looked around and here we are in a lunchtime crowded Hot Spot, and Tracey and I laugh, because to everyone else, Addison yelling "Seizure" might as well been somone yelling "FIRE!"...and we didnt flinch.....(how's that for a comma splice)

"Life is full of misery, loneliness, and suffering--and it's all over much too soon."

Woody Allen

God Bless~Christine

seizures suck!

Seizures suck!

OK new medicine...supposed to control everything and make life great...sucks!!! at least so far!! ugghhh, we are soo discouraged and don't know what the heck to do.

Basically, Jake had been having a seizure the past couple days, about every hour. And if it is not a seizure, he is recovering from a seizure, so his speech an mind are not "quite right."

After more than 6 months I truly thought we would be further along than this.

Our next move, stay tuned, is Austin, for the Cares Clinics, and then Germany , for stem cell research.

Call us crazy, but we need to save our little boy!

It is a funny thing about life; if you refuse to accept anything but the best, you very often get it.

God Bless~ Christine

PS~ I am truly trying to note more details, but it gets sickening at times...I am recruiting friends to blog for me!

Spring Break

Yeah! Spring Break is here and the cold rainy weather has lifted. We are enjoying absolutely gorgeous days here in the DFW area.

The kids and I went to the Arboretum yesterday. We then walked to drop Addison off at gymnastics. Today we walked to the park and flew kites.

I love Spring weather and changing seasons. I hope that the changing of the seasons will also bring new changes in Jake.

I will definitely commit to posting pictures and more news on our happenings with Jake tomorrow, as for now I need to get Jake's millions of meds ready so he can hit the hay.

Don't forget to join Jake's team in the stroll for epilepsy on April 4th. Tshirt orders will go in tomorrow, so if you would like one, please leave a pos tindicating the desired size.

OH, in cool news, well sorta, if you go down to the left and read the "in the news" tickers you will see an article about video games and seizures....this is Jake's neurologist.

More tomorrow

.For, lo, the winter is past, the rain is over and gone; the flowers appear on the earth; the time of the singing of birds is come, and the voice of the turtle is heard in our land.



God Bless~ Christine

pictures, practice, ponytails, planting, parties, and postitcal

Addison had her first soccer game of her season on Saturday. She had not practiced or played with her team yet, because of her illness. Therefore ,I was a little nervous, as to whether she would remember how to play and work together with her team mates. After some team and individual photos for picture day, Addison proved she "still had it." Little Mia Hamm did an amazing job and scored several goals. We were certainly proud of her!

Yesterday, was an amazingly gorgeous day in PLano, Texas. The weather had that new spring smell and it was 80 degrees.

The kids and I went on a walk and then played out in the front yard. Addison practiced riding her bike, sans her training wheels. We have tried to tackle the 2-wheeler before, but have not completely mastered it. Mostly because of lack of dedication by her mommy to get her out there and practice. I think she is well on her way, though, to now being a 2- wheel rider!"

While Addison practiced riding her bike today, Jake practiced some baseball.

After naps we went back outside to join Matt and help him with some planting.


The kids posed for some pictures.



and more planting



After spending some beautiful quality family time out front, Addison and I left for a birthday party at a gymnastics center. The same gymnastics center that is a HUGE sponser for the stroll for Epilepsy. They even actually have a big silent auction set up for the stroll. The same gymnastics center that we were headed to last fall for a birthday party and Jake had a tc, causing him to miss the shindig.

This time, however, Addison and I head out by our selves. Jake and Daddy were left at home to work on the pool, and finish the yard.

I had just finished examining the auction table at the gym, when the phone rang.

Matt never calls.

I answer, as I am holding a "Stroll for Epilepsy" brochure in my hand and hear the darned words:

"Jake had a big one...."

I ask how long and was informed it was about 5 minutes, but no Diastat, butt medicine, was given.

Jake's postical this time was almost 2 hours. If you remember from older posts, his other postitcals are usually 15 minutes.

I have learned my lesson, never to blog "the good news!"

After I wrote the" 48 hour seizure free" blog last Friday, I called my mom.

I inquired how he was doing and she said he had had two that morning......as I was blogging.

Over all this weekend he probably had 4-5 drops and "The big one!"

We will try to keep our heads up, it just gets depressing sometimes, when we think it is going so well, we have a set back like this. All in all, though, looking back to where we have come from, it can only get better....right?

When you get to the place where you would worry,
Stop and pray.

-Edgar Cayce

God Bless~ Christine

48

I am nervous to announce it, but Jake has not had a seizure in a little over

hours!

We must be ever thankful for small miracles, and ever hopeful for receiving greater ones

God Bless~ Christine

America's next Top Model

I started this blog trying to inform everyone that the shirts are here!! I will tell you about those in a moment,but first I got super stoked watching America's Next Top Model. This show has always been a little secret sin of mine. I have always loved and watched this show and am soooo excited about the new season.

As I am watching this evening, I am also trying to blog the awesome shirts that are in , but the blog keeps coming out in Hindu, or Malaysian or something like that. I email a friend for help and continue to watch my show.

I watch as they walk down for their first run way show. My heart starts to beat fast, as they strut down a strobe lit runway. I notice everything little thing that may be a trigger for our little seizure man.

The next thing I hear is a model announce..."I get nervous walking down the runway lit by strobe lights, because anything like that can upset my brain and affect my Epilepsy."

Too weird!! I am obsessed with the way "things come around,:" and cannot believe their is a new model with Epilepsy.

I am sorry she has Epilepsy, but am soo voting and routing for her! She is beautiful, normal, and a new voice for Epilepsy!

Exciting part II

The shirts are here!!

Again check out the stroll for Epilepsy site on the top right. Make a donation if you can, stroll with us, or simply buy a shirt.

The shirts are a mere $20. A portion of the proceeds will benefit the Epilepsy Foundation! Check them out

(front)

(back. The back will actually black)

But they that wait upon the LORD shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary; and they shall walk, and not faint

Isiah 40:31

This post took about 2 hours, literally! The kids keep getting up and wanting band aids, or covers, or kisses, or more lights on. This last time though, Jake needed "to go poop." We still have to jump up and take him to the restroom, as to avoid more er trips and gahes inthe chin. So as I am holding his little legs , as he tries to push his little cacadoody out,and he keeps asking me:

"do you hear it?"

"do you hear my toots mommy?"

I finally reply "yes Jake, now hurry."

He replies back, matter of factly:

"I have gassy, gas, do you smell it?"

The kids truly keep things in prospective.:-)

God Bless ~Christine

PS...order shirts by leaving a comment with a size and your contact information Or email me at christine_peters@sbclobal.net. Thanks Dana for that important bit of info I forgot to mention!

Am I speaking Hindu?

Strollin'

It's that time to start marking your calendars.
April 4th is right around the corner. Please come stroll for Epilepsy with us at the Dallas zoo!
PLease visit the link on the top right to join Jake's team, make a donation to the Epilepsy Foundation, or even buy a Team Jake t-shirt.

If you are unable to stroll or make a donation in these difficult times, please think about buying a t-shirt. A portion of the proceeds will be donated to the Foundation.

Check back for Team Jake shirt prices and a sneak peek of the design.

TAKS and seizure anxiety

Tomorrow starts the first day of the darn TAKS testing. I am so nervous for my students, my school and all the hard work the Apollo staff has been doing to prepare these kids for "the test" that almost, directly, or indirectly tells their future, or at least near future. If they don't pass this test they don't go to high school. The teachers are held creditable and it very much is a reflection on the school and district. This darn test, is embarrassingly, what teachers teach the school year for. I hate that we now have to teach to a damned test, but unfortunately, that is the way it is.

Wish the Panthers luck as we log many hours tomorrow, behind closed doors, sitting in silence, as we pray the kids remember everything we have been trying to teach them all year.

6 months out and seizures still suck! We have been having an awesome couple of weeks. Today, however, was quite different. I called in often only to hear the seizure count keep going up in a short amount of time. I believe I was gone about 2 hours, when I checked in the first time and Jake had already had 7 seizures.

Matt picked Jake up at 1:30 to go to the doctor's for an xray and a boogery nose check, and in the waiting room alone Matt counted at least 7 seizures.

I guess we have all learned not to count our chickens before they hatch, but we really thought he was getting better....and then today happens.

Why the doctors visit?
Jake ran into a wall last night. Yes, back to the gracefulness the kids got from their mom. He hit the wall with his thumb. He complained about it last night quite a bit. We examined the thumb and wrist area , to find, a blood blister around his nail area. He complained a bunch again today, therefore, Matt left work early to take him to the doctor. The doc checked him out, thank goodness, and found an ear infection. Maybe the infection caused more seizures?


The xray was "inconclusive" (whatever that means) We were then advised to see an orthopedic dr. to get better results. The last time were told this, we put Jake through a cscan, a mri, and weeks of pain with a broken clavicle!

Matt went to the hospital to pick up the xrays and we will have them re-examined for a second opinion tomorrow.

Wish us luck on tests and xrays!

God Bless~ Christine