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, February 25, 2009

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

Sunday, February 22, 2009


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

God Bless~ Christine

Saturday, February 21, 2009

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

Thursday, February 19, 2009

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

Wednesday, February 18, 2009

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

Monday, February 16, 2009

Parade article

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


also check out:


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.

God Bless~ Christine

Sunday, February 15, 2009

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.


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

Thursday, February 12, 2009

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.

"Papa, what are you drinking?"


"Can I have some?"

"not on my watch!"

"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

Saturday, February 7, 2009


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

Thursday, February 5, 2009

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

Tuesday, February 3, 2009

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.

Sunday, February 1, 2009

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!:-)