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

Flu gone bad?

Addison still has a fever. It stinks! We were asked to go back to the dr. yesterday. because they were certain she had pneumonia or bronchitis. She cleared both of those tests. They then thought she surely had type 1 flu, as well as the type 2 she already tested positive for, negative. We were sent home, less another copay, and the advice to come back if she still has a fever in 48 hours.

We are about 36 hours out, out of Tamiflu and still have a fever, hacking cough, and now no energy.

She has at least been getting up after 3-4 hour naps and logging a couple hours on the wii,watching a cartoon or two, and then heading back to bed.

This evening, she was able to jump on Bogey for a couple minutes.

(she looks soo skinny to me after a week of not eating)

We then put Jake to bed, and attempted to play the Wii. She lasted , maybe 10 minutes, 5 of which, she played bowling while sitting in my lap.

The fever has gone down and is not quite as high, but now her energy level is shot. I would chalk it all up to being sick so long. However, I know, or have heard, at least 4 stories of kids in this area who are in th I CU from "
flu gone bad."

I hope this isn't "flu gone bad," and I hope I can be my own child's advocate and do what is best for her.

Please pray for Addison to kick this illness. She misses school dearly and has already missed her first soccer game, practice and it looks like she will miss her second practice and game as well.

She is one tough cookie, but it looks like "the flu," after a week, is finally getting to her.

ON the bright side, I can't tell you how good it feels to have our sweet boy, at least mostly, back again. His sweetness, his critical thinking, his compassion...I am seeing, again what I saw 6 months ago. The seizures are not totally gone and we still have 4 weeks to go, but right now is good.

I guess we learn to take the good with the bad? Why can't it all just happen, preferably good, at the same time?

But the salvation of the righteous is of the LORD: he is their strength in the time of trouble. And the LORD shall help them, and deliver them: he shall deliver them from the wicked, and save them, because they trust in him.(Psalm 37:39,40)

God Bless~ Christine

fever?

So our daughter has been running a fever since Thursday.
Most occasions we would be freaking out.
Since all this has happened with Jake we have thought nothing of it, since she is on tamiflu, and she has been staying home from school, soccer, and other outings. However, our dear friends have "woken us up", that fevers for 3 days are not all to normal.
Addi has been running high fevers from 103.7 and low fevers of 101 and up. She goes in stints from playing the wii, to coughing uncontrollably, to sleeping for durations of the day.

now all I can think is fevers cause seizures, especially with fevers for days on end.

I dismissed it as nothing more than the flu. thanks to my loving friends who called to check in on Addi and keep us in check.

We will continue to keep a real close watch on Addison and pray that the fever goes down real soon.


during these times immediately ahead, the world will need many trumpets to sound the clarion call. The world will need many voices to speak the words of truth and healing for which millions long. The world will need many hearts joined together in the work of the soul, and prepared to do the work of God

Neale Donald Walsch

God Bless~ Christine

Matt's return

Matt finally decided to stay a couple nights at home with us, before he leaves again.
We greeted him with a pizza party, cake, presents and a ginormous prescription bill.

Addison's high fever turned out to be the flu. She had to miss her first soccer practice and her first game. She has spent most of the past couple days in bed with a fever of 103, coughing uncontrollably, and in between stints, throwing up.

She managed to perk up a tad to help daddy open his birthday presents.

While Matt was opening his gifts Jake was having seizures and Addison was coughing up her lungs.

This is "drunk Jake" after a seizure.


Finally, bath and bed time so Matt and I can get in some Wii time!

Matt and I played tennis, bowling and baseball for several hours. Although we are both embarrassingly sore from the hours logged having ridiculous fun, and I am bruised, literally, from Matt's over excitement in bowling (he nailed me in the face), we can not wait to turn on that piece of electronical equipment this evening as well.

The kids woke up, and too, were super excited to get some bowling in. Addison has turned out to be quite the bowler! She is now trying her hand with tennis.

I received a much anticipated addition to my camera today. How cute is this strap cover? Now, even though my picture taking skills are not the best, or even near pretty good, at least I'll look good butchering some "Kodak moments."

For I will restore health unto thee, & will heal thee of thy wounds, saith the Lord

Jer. 30:17a

God Bless~ Christine

Happy Birthday Matt!!

Happy Birthday Matt, aka Daddy!

We miss you and can't wait to see you!

7:21, Thursday night and both babies are in bed, asleep, I am baking a birthday cake, doing loads of laundry, mopping the floor and preparing to settle down to watch my shows.
I am proud of this accomplishment, as I was woken up at 4:30 with Addison registering a 103+ fever! I then got ready for work, gave Jake his meds., a workout in itself, went to work, got ready for my sub, picked the kids and my mom back up, traveled to Fort Worth, "chit-chatted" with the neurologist for a hour:-), went to the grocery store, and still managed to feed the twerps.

Done, except for the expectation by many to blog.

By now, I am pooped and don't have the emotion to give you juicy, emotional, details of the trip to Cattle Town. However I will give you a break down.

I went in very optimistic. Noting that Jake had his , what I would think a 3 year old boy personality would be, back. Noting every detail I can remember of the past 3 months,including, seizures, "drunkeness", by Jake not us:-), high points and low points.

He, Dr. Hernandez, cut me off after a couple minutes, as Jake slammed cabinet doors, switched lights on and off, struggled for the helmet he hates to wear, and pummeled Dr. Hernandez with blows with the "reflex" wand.

The dr. simply said.."lets talk about where to go from here, it appears Topomax is not the medicine for Jake."

Hmmmm....It appeared this behavior we have gotten very used to, was indeed not normal, 3 year old boy behavior.

Climbing, yelling, hitting, throwing, peeing, was what the nuero thinks he can change?

After many questions and many answers, w e decided to try the new drug Banzel and huddle back in 6 weeks. At this time if Jake was not seizure free, we will, or at least for now, go to the Vegas nerve stimulator.

I am not quite sure if I am 100% happy with my choice, but I do feel almost 90% happy with it. I am sick of the weaning on and off drugs, the side effects, not even knowing what typical 3 year old boy behavior is, and most simply THE DRUGS!!!

I hate how mind altering they seem to be. I truly want to lock myself in a controlled environment and take everything Jake's taking and see what I feel and record how I act. It can't be good on the brain.

Wish us luck in our 6 week trial.

We head back to Cow Town April 2nd for a sleep deprived eeg and "
the next decision."

Grey's starts in 20 minutes...need to finish laundry, before I plop my self on the couch....unfortunately, I probably won't be able to stay awake for even the first half. Thank God for DVR.

When we dwell on the past, we tend to want to live there. When we dream of the future, we want to go there. Our dreams are where God paints a picture of a life waiting to be created.

~Erwin Mcmanus

God bless~ Christine

The big day

Tomorrow is a big day. We have the big ole' nuero appointment. I am at a loss of what to even ask, inquire, or what I want to hear. I truly would just like a magic wand. This magic wand could be waved over Jake's head and, "zap", he is seizure free!

That's truly what I want.

I want him to be off of all these medicines, but still have the confidence to know he won't have a seizure that requires "
butt medicine", or a trip to the er, or the anger that comes after an "episode," or the fear that comes in waiting for one to occur.

That's what I want to come from this visit.

However I know, realistically, that probably won't happen.

So in the meantime, I pray to make the right choices for our son, to rid his body of these damn seizures and to also detox him of all these medicines that I have been choosing to put in him.

Wish us luck tomorrow, as we head out to Fort Worth for answers and miracles.

But Jesus looked at them and said to them, "With men this is impossible, but with God all things are possible."

Matthew 19:26

"Out of difficulties grow miracles."

God Bless~ Christine

Parade article

In case you missed the article in Sunday's addition of the Parade, please check it out:

http://today.msnbc.msn.com/id/29183743/

also check out:

http://www.cureepilepsy.org/home.asp


If you lose hope, somehow you lose the vitality that keeps life moving, you lose that courage to be, that quality that helps you go on in spite of it all. And so today I still have a dream.

~MLK JR

God Bless~ Christine

Pictures and prayers

The Rockstars

I couldn't resist showing some pictures of Jake's new gift. Although, the noise level and the Tejano emitting from this guitar is quite annoying, Jake and Addion LOVE Jake's new gift. He Loves and has always loved music!

We had an awesome and awfully busy Valentine's weekend. Granny and Poppi came to visit. We celebrated Valentine's Day and an early birthday for Matt.

It seems crazy that we were soo anticipating Matt's return from out of town and now he is already gone. "Time flies when you're having fun," I guess.

Addison and I, and a friend went to an amazing Valentines party Saturday morning. It reminded me of what Valentine's Day's were like when we were young. The kids had craft tables. They made Valentines for friends, bags to keep their Valentines and many other Valentine's day related crafts. They munched on heart shaped cheese, heart shaped sandwiches and of course chocolate covered strawberries. The party came into conclusion with a knocking of the heart shaped pinata. It was a blast! I wish Valentines Day landed more often on the weekend, so we could have many more parties like this .

Addison , Granny and I then headed to the Galleria. What dumb fun. It was a mere hour trip, but it was wonderful! I have not been out like that in so long. To get out and not have to stress about Jake and where he would be running to, when he might be having a seizure, and who is going to be staring , was awesome. After we got some errands done, returning Christmas gifts, we went to the American Girl store. Geez, as cool as I think it is, I am kind of , secretly wishing, Addison does not get "fully" into it. Besides it being, outrageuously expensive, one cant walk into the cathedral, they call a store, without having an anxiety attack. The mass amount people, the lines and the fighting over doll clothes and accessories, is all I can handle.

It was a great weekend, but over too quickly.

Prayers

Please keep in your prayers my nephew and his family. Ironically they started this whole Epilepsy journey almost a year ago to date, and before us, in Mexico for Spring Break. Chad had a pretty long seizure while seeing the sites in Mexico. They went to a nuero, upon their return to the states and Chad was diagnosed with Epilepsy. He has been doing great on medicines and his seizures have been pretty much controlled until this past week. He had a seizure at the mall and then a couple at his home. This is the first time it has affected Chad like this. They have witnessed our battle against the beast with Jake and been our rocks helping with him and the side effects of the drugs, and now what they have witnessed us go through, is happening to them. Please pray for the families strength, the doctors answers, and for Chads quick adjustment to the increased meds.

“I know the plans I have for you, declares the Lord, plans to prosper you and not to harm you, plans to give you hope and a future. (Jeremiah 29:11)”

God Bless~ Christine

Checking in

This week has been more than busy. Even with my calender and organizer, I feel lost. We have had dentist appointments, in-services, parties, play dates, work observations, ARDS, and doctor's appointments. I am ready for it to calm down a bit so I can focus on what should be done, rather than being pushed through the day, as if I was in a turnstile.

I was able to finally get Addison's Valentines tutu made for a party she has on Saturday. I also made her a shirt and got some accessories to go with her sassy little outfit. I can't wait to post some pictures. She has her Daddy/ Daughter dance this evening, sans daddy. Matt has been out of town all week, so Papa will be taking her. The wrist corsage and boutonniere are set and ready to go. I am very bummed, however, as I will not be able to see the Princess and her date leave in their chariot, as I have another in service this evening.

Jake has been doing really well! His personality is just outstanding! I laugh at the two twerps so much during the day. I can never wait to get them home from school and spend some quality time with them.

He did have a couple tc's this weekend. They never get any easier to watch. I have not had to use "butt medicine" though, so that is very encouraging! Although, he has had the "big ones", it seems the past two weekends, he is doing great. I think we have been averaging 0-3 seizures a day. Sometimes, if he has one, it is not even a drop. He has been having absence, or staring seizures again. Even though we want all seizures to vanish, limiting the drops is awesome, as hopefully it will decrease our er trips.

I can't wait to post some pictures that I will be taking over the next couple days, so hopefully by Saturday night I will have a moment to breathe and update everyone again.

Thanks so much for your continued prayers, thoughts and words of encouragement!

I will leave with a hilarious quote by Little miss Addi. My mom and I can't stop laughing over this. It is literally one of those things that I think about and spit out my milk or it spews out my nose, or cry in the car by myself, because I am laughing so hard.

Addison:
"Papa, what are you drinking?"

Papa:
"tea"

Addison:
"Can I have some?"

Papa:
"not on my watch!"

Addison:
"Don't worry, Papa, I won't spill it on your watch."

Sometimes the laughter in mothering is the recognition of the ironies and absurdities. Sometime, though, it's just pure, unthinking delight. ~


God Bless~ Christine

Grams

This song by Addison Road is just amazing to me. I can listen to it a million times a day and still not be sick of it. The words are so inspiring and carry on the theme of our blog. "Everything lies in Hope now, Faith some how..." Just amazing. I feel as if they are singing just to me!

Now for a bit of information, maybe symbolism, irony, call it what you will....Addison Road is actually what Addison, our dear daughter, was named after. Well to be 100% correct, Addison Way. She was named after Wrigley Field, home of the Cubs, which is on Addison Way.

The year my Grams, passed away, Matt used her wedding ring to ask me for his hand in marriage.
She was a huge Cubbie fan. Matt too, is a follower of the Cubs.
His bedtime song to the kids goes like this:

"Take me out to the ball game,
Take me out to the crowd,
Buy me some peanuts and cracker jacks,
I don't care if we ever get back,
"cause it's route , route , route for the CUBBIES,
If they don't win it's a shame,
For it's one, two, three strikes and your out,
at the ole' ball game!"

Addison's due date was the day my Grandma passed away, 5 years earlier. She was named Addison Mary, after Matt and Grams love for the Cubs, and Mary after my Grams.

Grams is surely looking out for us and giving us strength through all this.

(I also know Grams was very proud of her Cubs this year!:-) )


I find it amazing how things work there way around.

Therefore the Christian heart, since it has been thoroughly persuaded that all things happen by God's plan, and that nothing takes place by chance, will ever look to him as the principal causes of things, yet will give attention to the secondary causes in their proper place.

-- John Calvin


God Bless~ Christine

He drinks milk!

It may seem like such a minor thing to most, but Jake is drinking milk!! This is the kid who for all his three years, a cup of chocolate milk was his constant companion! He was happy, chocolate milk, he was sad, chocolate milk, he was going to bed, chocolate milk.

Since this all started in August, the meds. and seizures have altered him so much. He lost his wittiness, his desire, his happiness, and his cravings for...milk.

Today he has been asking for milk.
He even asked to go to bed with milk! His little sippy of milk has always been his "security blanket." To the extent we would simply put a teaspoon of milk in the sippy and he was fine to go to bed.

The milk is just a little spectrum in the symbolism that is milk.
Jake has been making very witty comments again, the first I remember since August. He has a fire back, the first since August, and he wants milk!!! The first time since August!

This road is surely rocky, and I am certain we will see more bumps, humps and curves, but it is certainly fantastic to see the light.

You shall worship the Lord your God, and I will bless your bread and your water; and I will take sickness away from among you.

Exodus 23:25

God Bless~ Christine

The "husbands perspective"

"I know I am supposed to be strong about things right now, but obviously I am not. I feel the same as your post on the blog. It is really upsetting.

I was going through all of my travel itineraries from last year and ran across the one from San Antonio. Sitting on the pool deck watching the two kids, run, dive, and trying to touch the bottom. Eating dinner at the cowboy place. Everything was perfect that day. My heart is fluttering now as I want to totally break down. Confusion, lack of concentration, and lack of hope is where I sit today.

Sorry for being so negative today. "

I will probably be murdered or divorced for posting this message. This is Matt's prospective after my last blog. He is the silent type who will let anything and everything build inside of him until it hurts so much he can't take it. I am very thankful that he sent me this email message, as I know he needed to release what he is feeling inside.

He tries to keep himself busy, "earning for the family", as all this transpires. We are so thankful for how hard he has been working for us, so thankful for all he has done for us, and so sad for the way he is feeling.

He is our strength! our motivation!
We will get through this.
This is just a ripple in our calm.

I tell you the truth, if you have faith as small as a mustard seed, you can say to this mountain, "Move from here to there" and it will move.

Matthew 17:20

God Bless~ Christine

After reading my quote again, I am thinking it is actually the inspiration of another blog I read...I will have to research that to be certain.

Faith...without Faith we are nothing.

supposed to

So here I am blogging, because I am supposed to. I have been getting all the emails and phone calls that they "need" our blog.

Sometimes, however I can't bring myself to do it.

This week, or past 2 weeks, have been hard.

Again. our angel has been slipping away.
I take his temp. every 5 minutes, thinking it is because he has a fever.
No fever. The seizures every 5-10 minutes and the inability to hold his head up, or eat his food, or walk from a room to another room, are quite discouraging.

I would like to blog better news, but at this moment I can not, as I simply at a loss as to what I cando tohelp my little boy.

I am not afraid of tomorrow, for I have seen yesterday and I love today.--William Allen White

God Bless~ Christine

ps..sorry Sally, as I know yu hate to hear me talk negatively. everythings fine!:-)

So much for compassion

Addison just rolled out of bed and said:

"Jake kept me up all night, because he kept having those TC's."

So much for compassion.

"Never apologize for showing feeling. When you do so, you apologize for the truth."


God Bless~ Christine

Yet again

Last night I went to lay with Jake on his bed on the floor, as I was terrified to let him sleep all alone. When I went to snuggle next to him, I noticed that he had wet his pants. I did a quick underwear change and swept him up to sleep with us in our room.

At about 3:30 Addison too joined us.
At this time I rolled over to check the district website to see if they had yet updated the site as to whether or not we wold need to strap on our ice skates to get to school.

There was still no update.

I turn the phone off, settle back in to the warm bed, get nestled among my family and...

I hear it.

The gasp!

Matt and I both huddle over him at the same time and here begins another tc. I actually have my wits about me to tell
Matt to turn him onhis side. I then observe. This one does not look like it had the intensity of the many that started us on this journey. However, it seemed to go pretty long.

Since Addison was in our bed, she obviously witnessed the entire thing. When she heard the gasp, the first thing out of her mouth was "Jake cry, Come on just cry." She knows when he starts to cry it is over.
She then continued to talk to him and try to coax him back to consciousness, while rubbing his leg.

I sincerely get sick to my stomach as I think about darn seizures. But, if Jake is going to fight these demons, this is exactly how I want him to do it....as a Family, all together.

"In family life, love is the oil that eases the friction, the cement that binds us closer, and the music that brings us harmony."

God Bless~ Christine

Darn it!

We got the kids off to bed last night with huge smiles on our faces. Our Jake, appears to be getting better! yeah!

I hop into bed at about 9:30 last night. By 10:30 I am startled by a blonde haired, blue eyed boy, staring me in the face. If and when Jake crawls into bed with us, it is usually in the early morning hours, so for it to be so early, I thought this was strange. As I was freezing and didn't want to walk the path on the cold floor back to his room, I lifted him up so he could snuggle right in between Matt and me.

At 11:08 it happened.

I am unsure why I bolted out of bed and turned to find Jake, but thankfully I did. Only to find him having a tc.

Darn it!

I forgot how miserable these are to watch.

When it finally clicked what was happening I wake Matt and have him get the "butt medicine."

I think I was in shock. I remember doing nothing except crying and staring at my baby boy, as his eyes deviated up and the the left, his body was convulsing and limp, and he was unresponsive.

I should have turned him on his side. I should have done something. However I was numb.

To think just a couple hours before I was bragging to anyone who would listen how great he was doing. Now I am like a deer in headlights, acting like this was his first time to have a seizure.

This was not his first seizure and I can only dream it will be the last. All we can do is keep the hope and faith that things will continue to improve.

"Sorrow looks back... Worry looks around... But, faith looks up."

God Bless~Christine

endings and new beginnings

This past week, we sadly mourn the passing of Slugbug. The poor crab left his shell, he knew as home, and ventured for the search of a new home. Addison and I tried to coax the poor "bug" back into a new home and into his old home, however Slugbug, apparently did not have the strength. We found him the next morning trying to climb a pyramid to meet his creator in the sky.

After a memorial surface for the poor Crab he went home to the big guy in the sky via a Walmart bag and a green city trash can.

RIP Slugbug...You will be missed.

We have had a fun and eventful week and I will save the best for last. Addison went with Papa to see Annie the ballet. She loves going to see musicals, plays and ballets. She probably even more enjoys the time with Papa, as the world is hers when they are together. She can do no wrong in his eyes and can get whatever her heart desires..well most of the time. It is Matt and I who have to "pay" for several hours or even days after an outing with Papa, or any Grandparent rather. She can conquer the world when she is with them!

Granny and Poppy sent Addison and Jake some Western attire for Addison's Western day at school. Addison LOVED her get up. Jake was impressed with his as well, but chose to be the naked cowboy.

Jake went shopping for a New big boy bed, yet again. It seems the infinite search for the perfect bed, at the perfect price that will last us as long as this child is living in our house, is near impossible. However, we finally decided on one at The Cat and The Fiddle that is pretty cool. It is not the price we would have liked to pay, but I guess beauty comes with a price...right? Waiting the 6-8 weeks for delivery could be excruiating. The child no longer sleeps in his bed. He begs for us to make him a bed on his floor, or ventures to our room in the early morning hours. This could be the longest 6-8 weeks we have known.

New Beginnings?

Jake has had.....drum roll....... no more than...drum roll......3 seizures since Friday!! Of course these are ones that we have seen. He could have had more, but we saw no more than three! Friday we only logged a couple, however he had weird behavior, that I am really unsure about. Therefore, I will not count Friday. Today he had his first seizure free day at school!!!

I praise God for the small things. I find myself feeling giddy inside and bearing a "perma-grin!" I look back and can't believe, truly, how many seizures he was having a day...as little as a week ago ...we were having more than 15!! To have 3, or less, all weekend I am beside myself!

“Nothing has turned out as we expected! It never does. Life's under no obligation to give us what we expect. We take what we get and are thankful it's no worse than it is.”

God Bless~Christine

The new and the different

Our journey to "cure" Jake of daily seizures and the beast they call epilepsy, has taken us on to new and different things (we still are under the care of our nuero).

I make fun of these new approaches, however in my joking, I truly believe they are/will and do make a difference in Jake's life.

We have ventured out to seek the therapy of a homeopathic chiropractor. Jake has been adjusted a couple times and we are also giving him supplements in an effort to detox his little body of some toxins that may be taken up residence uninvited.

The first visit to this doctor was quite an experience. She practices, what is called Nutritional response testing. It is an ancient form of Chinese acupuncture. Coming from a world of hospitals, vaccines, ambulances, and over the counter medicines, it was quite different from what I was used to.

We are willing to try anything, though. What can it hurt?

We went this past Tuesday.
Monday Jake had at least 15 seizures. 11 of these in just the 3 hours he was at school.
Tuesday his seizure count was just about the same.
Wednesday, after out first visit and supplements were given......5,or less.
Thursday.....5 or less!!
The child has more energy (a little too much for my liking...you think I would be skinnier chasing this tornado around everywhere) since Tuesday. His speech has seemed to improve and his attitude seems to be much better as well. Not to mention, look at the decrease in seizures!

We are unsure what is exactly causing this turn for the better in Jake, and we can't over analyze it. We will continue to do whatever may help Jake and right now, at least, we are succeeding!

"Hope, like faith, is nothing if it is not courageous; it is nothing if it is not ridiculous." THORNTON NIVEN WILDER

God Bless~ Christine

Mission aborted and more

Many have been wondering how the diet has been going. The diet is not going. We aborted this mission after a week, less 4 pounds, lethargy, dehydration, increased seizures and fevers.

We were beginning to lose our little man again,much like the many blogs that started this site. He was having a difficult time forming sentences, having motor control, and with loss of strength. Our little guy was leaving us, so we pulled the plug.

Was it the diet? Who knows, but we needed to decrease our variables in Jake's life, to fine tune our knowledge of what may trigger seizures ans cause adverse effects.

We are still weaning on to a new drug and off of a drug, he may have had a fever that week, I went back to work, after staying with him for 2 weeks straight, and we started the diet. We were really unsure what was causing Jake to disappear again, so we chose to remove at least one variable, the diet, and see what happened.

The first day after starting Jake on a normal diet again, he joined us! He was back! We were still having many seizures a day, but his personality and spirit were once again with us.

We will indeed retry the diet if need be, however we want to wait until we are completely weaned on to this new medicine.

and More (the comedy)

My sister in law finally "got it", I think. We were visting her early last week and we had an incident that i think made her appreciate the comedy, that is the Peters household.

Lisa and I were sitting at her kitchen table, as the kids played. Jake walked passed me to go to the playroom. I followed for some reason. Maybe to watch him, maybe to go to the potty, who knows, but I followed. I am 2 steps behind Jake when he....(all together now)...."bites it" and hits the linoleum floor. Jake and I are now about 10 feet from Lisa, but around a corner. Because there are 5 other kids in the house, I try to nonchalantly, let Lisa know I may need a little assistance. I calmly announce to her, "Jake fell, it doesn't look good."

No response.

me: "Yeah, this is not pretty, help?!"

no response

me (over Jake's wailing): "it's dripping, it's dripping.

By now blood has drenched my socks, the floor, Jake's shirt, and is pooling in my hand that is cradling Jake's mouth area.

me: "Hello? "It's dripping, it's dripping!"

now I See this hand creep around the corner with a wad full of paper towels.

Phew, Now I can assess the damage and cleanup a little bit of ourselves before tending to the floor.

Lisa is still unresponsive, but hands me more wads of paper towels!

Apparently blood freaks her out. Welcome to the Peter's family.

About this time Matt calls.

I am sitting at the table with Lisa, on the phone with Matt.

I proceed to tell him, over Jake's wails, all is well. Matt continues to ask Jake to quit crying. At this moment I rip the phone from Jake's ear, as Matt can't see the cause of the crying and I didn't want to upset either of them more.

Right about this moment, as I hung up the phone, Lisa snapped a photo of "the scene." The humor, to her, was that I was reassuring Matt that everything was hunky -doory and she was witnessing something quite the contrary.

Blood was embedded in the diamonds in my ring, in the groves of my fingers, the cuticles of my nails, and was still oozing out of Jake's mouth. This was after the frantic "clean up."

"Every thing's fine!":-)

We probably could have hit the er after this incident, as his frenum was completely torn, there was a huge gap, and another added slice, from the New Years Day massacre. However, I am not sedating my baby for cuts that will heal on their own, but just take longer to do so.

"Laughter and tears are both responses to frustration and exhaustion . . . . I myself prefer to laugh, since there is less cleaning up to do afterward." [Kurt Vonnegut, Jr.]

God Bless~ Christine

He's three!!

It is the weekend, therefore I promise to post more. An upcoming title "Mission Aborted!"

I have a few minutes tonight however, as the kids finish their S"Mores and I wait for Matt to return with dinner.

As little as a hurdle as this may seem to many, it is huge to me. Although it makes me kind of sad thinking that the child is so used to take medicine he conquered this obstacle without even a flinch, he did it!!

Medicine giving time is usually painful. Most of the time Jake is pretty good about taking his meds, which consist of a couple syringes (sans needles), and sprinkles (loaded spoon topped with 2 capsules of "sprinkles"). However other times it can be a beating to say the least!! Chasing the kid under tables, behind couches and hearing wails of defiance can get old real quick!!

Well tonight and the past couple nights PROBLEM SOLVED!!!!

Jake now swallows his pills!!! Yeah Jake!

He is so proud of himself and up for the challenge that it takes 30 seconds to administer meds, instead of the "unknown" time span!

He's three!! I know more than one adult that still can't swallow pills!

"Take the first step in faith. You don't have to see the whole staircase, just take the first step." [MARIN LUTHER KING, JR]

God Bless~Christine

seizure count recently 10-15

Simply stated

I feel I need to blog at least a little something , as I have been getting the feared emails and calls "Blog B---!"

I am not sure I have the energy, the spirit, the confidence, or maybe not enough wine tonight.

I still can't fully wrap my head around the turn our life has taken. I am fine with this detour, however I really thought would would be redirected onto the main road by now.

Addison says it best, and it certainly pains my heart for her to carry such a burden. However at every chance she gets, ie. shooting star, first star in the night, letting a balloon fly upwards for a never ending journey, and upon every daffodil, she wishes, simply:

"please let Jake's seizures go away."

She does not wish for herself. For a new barbie, or brand new puppy, but only for the health of her brother.

Addison too, has become afraid of "the phone call." As she stayed at my parents this past night, I called several times to check on her and her return and she was heard in the background almost every time, asking "if Jake was ok?"

This 5 year old dear child of mine, has more spirit, more bravery, and more compassion than I could ever have imagined. I, again, would love to have an ounce of what she has!

She states, ever so simply what we all dream of for Jake.....seizures go away....

~ Children are remarkable for their intelligence and ardor, for their curiosity, their intolerance of shams, the clarity and ruthlessness of their vision. ~

God Bless~ Christine

oh the humor and randomness

As I am sitting here finishing up email and "catching up." My daughter walks in after being in bed for at least 45 minutes and says:

"Mommy, do you know Natzi's are really bad people?"

Yes, I am aware of that....but geez, what in the world could have caused a 5year old to contemplate The Natzi's?

It makes me really realize how much kids soak up in our daily lives. The little things we may mention in passing, laugh at on tv, or even sing in a song. These words that "oh so knowledgable" adults, speak to children, are sucked up and forever embedded in their heads.

Our children our sponges. Now is our time to mold and make these sponges into the amazing people they are destined to be!

~ Children are like wet cement. Whatever falls on them makes an impression. ~


God Bless~ Christine

Jett Travolta

I don't mean this negatively, so please no one take it this way. But more in a positive note, as I have accepted this demon, we call epilepsy, that has taken over our son.

If anything can come of the unexpected death of Jett, and unfortunately, it probably could have come earlier, maybe the world can come to see what we deal with every day.

I truly feel like Jake was given this to make more people aware and I ask myself every minute it seems, what can we do to help the cause?

Maybe this is what we, as an epilepsy community, need.

A big celebrity, who is/was battling seizures, to bring awareness to the cause.

We all know the stats. Money is/has not been provided for research and awareness. However seizure disorders and epilepsy affect 2,700,000 people in the
U. S. and 50,000,000 worldwide.

I am a special education teacher and educate kids who suffer from seizures, but never "really" knew, until it happened to me.

Maybe this is/was his ( J. Travolta's) calling?!

I hate this happened to his family and I am surely not going to criticize their choices in treatment. They lost a loved one, and could very well be beating themselves up for what they could or should've done.

But, this is bringing an awful lot awareness to autism, epilepsy, seizure disorders and other disabilities... .maybe that is /was their (the Travolta family's) cause.

"Sorrow looks back... Worry looks around... But, faith looks up."


God Bless~ Christine

cheese, cheese, and more cheese

I did it! I jumped in and made my first Modified Atkins Meal, via a Keto recipe! I made Jake a pizza, that he actually ate!

The kid has not eaten in over 36 hours, except for sips on "flavored water" and "cream," which is his new milk. The first day of the cream, he thought it was the greatest drink ever. However, today the cream did not get the same welcoming.

I had cups, sippy's, and different cups thrown at me all afternoon. He did not want the cream! He did not want water, he did not want "cheetos" (american cheese nuked to make crisp crackers). The kid wanted nothing, except to beat me, the dog, or his sister up.

My mom did not even take him to school today, as he wasn't acting himself. She reported he was very tired, weak, couldn't urinate, and wouldn't eat. I communicated with her on the phone several times during the school day to try and tell her what to "try," but it was all for naught. Nothing worked until the PIZZA!

Yesterday Matt brought home endless supplies of pork rinds, a "free food", eggs, sausage, cream, and bacon.

We can do this! Yeah 24 hours in, I have my doubts. We can accomplish anything, but it is heart breaking, as he is crying for dessert. We most always have family dinner and then the kids get to choose a dessert. Unfortunately,our pantry is not yet stocked enough to make the $9.99, carb free, brownie mix I purchased at a speciality store. These brownies are surely made of gold! It was actually so surprising, that I didn't even flinch buying this gourmet bag-o-brownies. This is going to help my boy adjust to his new diet and get rid of damn seizures, it is a small price to pay.

Jake had 10 more seizures yesterday and about the same today. Very discouraging, as we were a couple/several day at 3 and under.

So back to the pizza. It was surprisingly easy to make, Jake liked it, and Matt liked it so much he was even trying to steal it! Up until I was swatting his hand, as this stuff is gold! I need to freeze all I can!

This diet will not be easy, by any stretch, but we will make it work for our Jakers, tantrums, thrown sippies, thrown food, and refusal to eat, will get better.


"Faith is to believe what you do not see; the reward of this faith is to see what you believe." [SAINT AUGUSTINE]

God Bless~ Christine

the diet starts?!

I had every intention to blog on a couple of things, but through the tears, I don't feel I can post more than a little update.

I somewhat, 1/2 heartily, started Jake on the modified Atkins diet this evening for dinner. Having absolutely no clue, if I am doing this correctly or not. I slap some bologna on his plate, a piece of cheddar cheese, a hard boiled egg and mucho mayo. I try to make it pretty and "fun" by cutting the bologna and cheese I rolled up into little "sushi rolls" and poked them with a toothpick, so he could pick them up.

Jake is allowed no more than 15 grams of carbs a day, but 10 would be ideal, on this diet. From my calculations, His dinner had less than 5.

As the dog steal one of the "sushi rolls" I throw him another piece of cheddar and again try to make "it fun" by having him bite eyes, A nose and a mouth. He won't even touch the eggs so I give him another piece of bologna and make more faces.

As he is eating this ultra boring meal, he talks to his food and says,

"seizures go away!"

I have been trying to lead into this diet by telling him he can't have bread anymore b/c we want the seizures to go away.

As much as I want him to be aware, as to why he has to eat differently than his sister, his mommy, his daddy, and other kids, it was a wake up call to hear those words spoken to his food.

Just after Jake says this his head drops with a seizure. Did I think this diet would work instantly? Of course not, but that's some strange irony, if you ask me. How does a diet stop seizures?

I would rather err on the side of faith than on the side of doubt. - Robert Schuller


God Bless~ Christine

yesterdays count = >2
today thus far= >2