Geaux Saints!

I know, I know. We are typically a Dallas Cowboy loving family. However, while Jake was staying at Cook Children's for a week, the week before Christmas, a little transformation was going on!

One of Jake's favorite nurses/EMT's conducted a little brain warping. (it's very hard to say "favorite" ,as Jake adores everyone at Cook Children's, but Richard is pretty close to the top) Nurse Richard taught Jake to chant Geaux Saints! Richard is a true Cajun' and has an awesome, distinct Cajun' accent to prove it. Jake loved to hear his nurse simply talk to him with his mesmerizing twang. To this day if you ask Jake who he wants to win a football game, any football game, he responds :

"The Saints!"

So, at least for today, this house will be cheering for the New Orleans Saints!


Good news for the day!

Jake has been seizure free since Friday morning!!! No nocturnal tc's!!! I surely hope this 2 day streak lasts! (KNOCK ON WOOD)

Geaux Jake!
Geaux Saints!

Some people are always grumbling
because roses have thorns;
I am thankful
that thorns have roses.
Alphonse Karr

Surprise!

The kids have something to tell you!

Jake and Addison are going to have a baby brother!
They are beside themselves, to say the least! They read to him every night, have named him, and are constantly touching and kissing the sweet boy.

I have been waiting for the "right" moment to announce this surprise and figured today is as good of time as any.

Yesterday we had our 20 week sonogram. It is always such fun seeing the miracle inside of you grow, wiggle, and develop.

the good news:
The baby looks great. he was a very active little one, putting on quite the show for us on the monitor. It is truly amazing and breathtaking how little he can be inside my belly and how much you can actually see from a simply sonogram...just astonishing.

I went into the appointment thinking I was 19 weeks and a couple days. However, after a very long and intense sonogram, it looks like I am 21 weeks and a couple days. So, little man should be expected to make his arrival in early June!

The bad news:
I thought the sonogram tech was simply trying to give me tons of pics of the little guy, therefore having the sonogram last about a hour. However, I soon realized that something may be wrong.

Apparently my umbilical cord only has one vein and one artery, a condition sometimes called SUA. A healthy umbilical cord should have a vein, supplying the baby with the food, nutrients and oxygen he needs, and 2 arteries taking the junk out from the placenta that the baby doesn't need. I only have one "junk drain." This can cause many problems and birth defects with the baby. Although, this is a VERY scary diagnosis, especially if you are stupid enough, like me to google it, I am optimistic that "Miracle , Oops baby" will be just perfect!

The course of action right now, is simply for more frequent trips to the doctor to measure the baby and take some pictures.

Please say a prayer for Baby Peters! We are so blessed to be given another chance to be parents!

Jake news:
Jakey boy went through an awesome seizure free patch about 2 weeks ago. He had no nocturnal tc's we caught, and besides some battered and bruised limbs, the boy has been great.

Then...we went to the doctor last week and bragged about his period without seizures. Call it a Jinx, but now he is having 3-5 tc's a night.
I called today just to inform the dr. that from my last status report things have changed. i expected nothing to happen form it, but just for it to be journaled.

I recently heard from the nurse and she said Dr. H was taken back by this news and 3-5 was DEFINITELY too many to be having every night.

Therefore, I am to tweak some medicine. If the tweaking does not bring positive results, we are back at Cook Children's for another round of steroids and oral steroids once we are released.

Seriously, does this roller coaster ever slow down? because I want to get off!:-)

Please say a prayer for Jakerdoodle as well.

A dear friend and coworker sent me a couple verses today. Although I have read and heard this one many times, it really stood out to me on this day.


11 For 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. 12 Then you will call upon me and come and pray to me, and I will listen to you. 13 You will seek me and find me when you seek me with all your heart.
Jeremiah 29:11-13 (New International Version)

(picture to be added later today)

Help for Haiti

We had a very fun and busy weekend. I skipped almost all of the much needed work that needed to get done around the house to hang with the kids, run errands, and go to parties. On Sunday, before Addison was to attend another party, the kids had a lemonade stand.

This wasn't any regular lemonade stand. All the funds raised are going to a Haiti relief fund.

The kids have been watching the news and, of course, the coverage from Haiti is all they have been seeing. They also caught glimpses of the huge telethon on Friday. When little minds see things like this, it is obviously very difficult for them to comprehend the magnitude of the disaster that is actually taking place.

After, what seemed like hundreds of questions about the earthquake and the effects it had on the country and its people, they, or Addison finally seemed to get it.

She explained to me what the children over there don't have, including a St. Jude!:-)
She was beside herself and wanted to help.

Not knowing how, I was reminded of a High school who posted on Face book that her kids had a lemonade stand to raise money for Haiti and to help her kids understand the magnitude of devastation.

Therefore, this is what Addison and Jake decided to do as well. Within less than 2 hours of "work" they raised 60$! I was so proud of them! They explained to all the customers where the money was going and why they felt they had to give. I have to admit watching them work so hard to to explain and sell their product certainly brought a tear, or several, to my eyes! If I said a tear, I would be lying, as it can only be described by that big lump you get in your throat caused by such pride for your little ones, and emotion because of their actions.



To learn more about what you and your children can do together to help others around the world please visit:

www.kidswithcourage.eventbrite.com

"You must love and help your neighbors just as much as you love and take care of yourself." (James 2:8)

seriously?!

I seriously need to get better about popping in and blogging. I am getting so far behind updating on the craziness that is , "The Peters household."

This weekend was certainly no exception to the crazy rule!

Matt was out of town fishing, so I enlisted some help from Babi and Papa in shuttling the twerps to and from their many activities. The kids and I grocery shopped and ran errands.

On our last errand of the day, Addi and I were unpacking goods from the kitchen, waiting for Jake to come in from the garage, as he is always the last one in, because he finds it necessary to explore the garage for hidden treasures EVERYTIME we park. It is even more fun to him now, as Matt has done an excellent job reorganizing, the pit, we call a garage.

It had been a couple minutes so Addi and I start to holler for Jake to come in. We finally hear him, and then the door slam, and then an "ouch!"

I advise the booger bear to come to me in the kitchen so I can kiss his boo-boo. he doesn't come. I then, more harshly tell Jake to come here, as it is pretty quiet now. He then yells to me..."Someone open the door!"

I am dumbfounded, as he knows exactly how to open the door and he is inside now, where he is supposed to be.

after a few seconds, i go to help him.
There he is, looking up at me with a worried look and says "puh-lease, open the door."

I look again, and his hand is completely shut in the door on the hinge side.
We open the door and get his hand out, and thankfully all parts are still attached! PHEW!

However, I couldn't get the tip of his fingers to get circulation....so I wait, and wait for the tiny tips to get pink again.

After much chaos, and many phone calls, Jake and I head off to the er once again because circulation is not coming back
.
The hand , after being xrayed, was not broken and circulation was now fine. He did however have a nail that was about to fall off, and most likely a sprain. So we are sent home with a hefty little splint and a smile.

the following day Jake had his first bowling birthday party. I urge hm to bowl with his left hand , as his right is still in a splint. Not 30 minutes into the party it happens...he hurt another finger on the other hand.

I refuse to run to any Dr. after the previous nights expeditions, so I kiss it and assure him it will be fine.

As the hours and days go by the newly injured bowling hand, gets more and more swollen, and more and more purple.

I tell myself that I will ask Dr. H about it at his routine neuro appt.on Tuesday.

The neuro appt. was great! I felt as if it was a very positive one.
When I finish rattling off a trillion questions, I nonchalantly ask Dr. H, if he thinks Jake needs an xray or if he feels it is just a sprain. He plays it safe , of course, and sends us upstairs for an xray. About ten minutes later, I was told that we need to head back down to orthopedics, as it did look like he broke his hand/finger!

so we returned downstairs to orthopedics and it is confirmed that Jake has a fracture and needs another "cast" on his other hand!

Needless to say, Jake LOVED the attention and is very proud of his "new hands!"

Tuesday was a very busy day for us, but the "one stop shopping" while at Cooks was great. Like always we were treated fantastically and I can only imagine how much worse all the dr.s and waiting could have been.

Here is a pic of the little trooper. Unfortunately I only have a fuzzy one from my phone right now.


I am soooo very thankful for everyone that helped us this weekend in the ongoing drama, that is Jake's life and to the many nurses and dr.s that helped us at Cook's. I also praise the Lord that Jake's injuries were as minor as they were. Although, he will be out of gymnastics for a couple weeks, I think he will be just fine!:-)

I can't help but look at the past couple days and how things transpired and not laugh. I grin, chuckle and sometimes even belly laugh thinking about it. Seriously?! who does this kind of stuff actually happen to?

He is so Brave! I am soo proud of him!
And Joshua said unto them, Fear not, nor be dismayed, be strong and of good courage: for thus shall the Lord do to all your enemies against whom ye fight.

Joshua 10:25

sleeping is more dangerous than it sounds

Last night I had just fallen asleep, after hours of tossing and turning, and heard a humongous THUD!!

I have heard it before, so I hesitated, braced myself and then made my way to the side of the bed where the obnoxious noise rose from.

I see Jake's pretty, little, now bloody, head, wedged in between the nightstand and our bed.

His face was already a bloody mess, but I was worried about his head. After much searching, and thorough checking the head had no wounds! I now was able to work on the source of the blood.

It seems , as Jake tumbled off the bed, not only did his teeth make it almost all the way through his lip, but on the way down, I am assuming the nightstand, tore away his top layer of skin from the bottom lip.

It was a very nasty sight, BUT was not caused by a seizure. I have said it before and will say it again, Blood is sooo much easier to handle when it is not stemmed from a seizure!

The boy looks like he has been in the ring with Tyson!



Much to my surprise, because of the salt, the kid was still able to eat almost an entire jar of pickles for dinner, hence the pickle seed on the bridge of his nose.

still catching up- ICE at the Gaylord

A couple weeks before Christmas we took my dad to the Gaylord Texan for his birthday. Every year they have an amazing ICE display. This year it happened to be based on The Grinch, one of Addison and Jake's most favorite movies.

When buying tickets we were warned that the exhibit reaches a blustery temperature of only 9 degrees! Needless to say I wrapped the kids up in as many layers as I thought would fit under the provided, lovely, blue parkas!

Because with extreme changes, we may see more seizures, I was allowed to roll Jake around the exhibit in his stroller for "medical neccesity." Good thing I did, because the child did not like the cold one bit. After participating in some fun that the display had to offer,
he then retreated to the comfort of his limo, the stroller, and only seemed to show signs of life after a much needed cup of hot chocolate. Addi on the other hand could have slept in the Grinch's bed, as she thought it was fabulous and the icy temps never appeared to phase her.

This was truly such an amazing work of art it was breathtaking. I was so excited to be able to share it with the kids. They had a great time and were in awe of the wonder that is ICE.

Last Christmas, this kind of venue would have been my worst nightmare and an anxiety attack waiting to happen, as all the surfaces are rock hard. I can just picture Jake busting his chin or his head, after falling from a seizure.

Although we still have some mountains to climb, in regards to seizure control, Jake is doing a million times better. For this we are blessed.

Blessed be childhood, which brings down something of heaven into the midst of our rough earthliness.
Henri Frederic Amiel

Catch up!

It has been a long time since I have posted and you have missed out on some great events we have been involved in during this Christmas Season.
This is going to be a picture post of our many outings( changed my mind last minute...one outing at a time), so I won't feel so far behind.

Make a Wish gingerbread house making

The weekend before Christmas Make a Wish invited Jake to attend a gingerbread house making event. I never now what exactly to expect when fun things like this come up, but when it comes to MAW, I certainly, almost always underestimate the level of fun, planning and dedication that will be given to these kiddos.

The kids were given chef aprons, breakfast, gingerbread houses, and special appearences were made by some very special figures here in the Dallas area.

Rowdy, the Dallas Cowboy's mascot, calling Tony Romo, Jake's hero!

Addison was made to feel not like "the sister of a wish boy," but rather as an immediate part of the group. We had a great time! It was certainly a great way to get the Holiday season underway!

Jake loved looking at the lobsters maybe even more than he loves to eat them


I think the kids could have possibly eaten more candy than actually went on their masterpieces.




The final products!



They were so proud and had a great time! I am definitely going to make gingerbread house making a tradition in our house for Christmas time. We rae so blessed to have been surrounded by amazing people willing to give up their time for our special kids. Thank you Make a Wish! Thanks for everything.


Make a wish, have a ball, dream a dream, be it all... If you want it, you can get it, But to get it, you've got to want it. Anything you want to try, Just let go, fly high... and Make a Wish. Tom Chapin

Merry Christmas!

Merry Christmas!

On this very special day, I only want to take a small moment away from my family at the computer (tons of pictures and stories to come , however).

I came across an article this morning in The Dallas Morning News, that was not only eye opening, but also heart opening as well.


As I was throwing the paper in the recycling bin, along with the hundreds of boxes and wrapping paper littering the floor of our adobe, I hesitated. I was certain I would have no time to read the news and just was going to throw it away. However, after a moments hesitation, I decide I would make time to read the periodical.

This article stood out to me, for obvious reasons.
http://www.msnbc.msn.com/id/34584053/ns/health-kids_and_parenting/

As I read it I could only think of how much my family reminded me of the family I was reading about. So normal, so loving, parents to a young crew. However, there are some very obvious differences.

As I finished the article on this Christmas Day with Jake playing only feet away from me, it hit me! Not only am I blessed a million times over, but I am also probably not even near as grateful for this life as I should be (are any of us?).

I have anxiety because our baby has seizures, sometimes hundreds a day. I stress over the hurt it causes Addi, watching her little brother take drugs every day, struggle with everyday activities, and being shuttled around herself. I worry that they will never go away and that people look at him differently because of them. I struggle with making the right decisions medically for my child and his brain. and most of all I want to badly to make them go away.

But when it comes down to it, I have him.

I may have to put a diaper on him, have him sleep with us, watch him struggle with numerous educational tests to ensure he is getting the best education possible for his special needs, and alter our daily lives to accommodate him, but we have him. I can hold him, help him to the restroom, dry his tears,wipe his drool, and guide him through life's obstacles.

It was a joy watching our two kids light up with the joy and excitement , that is Christmas and the birth of our Savior.

For this I am blessed.

I have them!

For this I am Blessed, indeed!


"When the star in the sky is gone, When the Kings and Princes are home. When the sheperds are back with ther flocks, The work of Christmas begins: To find the lost, To hel the broken, To feed the hugry, To release the prisoner, To teach the nations, To bring Christ to all, To make music n the heart."
~Howard Thurman, The Work of Christmas

Great news!

Dr. H came in this morning. I was still dumbfounded and shocked by yesterdays news that I did not want to say anything or ask any questions, because I was simply afraid of the answers!

So , he walked in and I stood.
I stood waiting for news, before I could ask and get answers I didn't like to hear.

However, I did notice that as he walked in he had a slight smirk. This was huge on his excitement scale, as he is always very stoic and professional. The grin was a bit of foreshadowing for me.

Because I stood, for what seemed like hours to hear something, he started to inform me of the findings from the previous nights veeg.

He stated plain as day:
It looks so much better! He saw about 50% improvement from the veeg just the night before!

50%?!! to me that is huge!!

Obviously, I was very pleased with that news and have been on a high ever since those fantastic words entered my ears. A high, that even Jake's awful moodiness and temperament from lack of sleep, side effects of steroids and missing home, could not bring me down from.

Our boy is a fighter! I pray that tomorrow will bring such sweet words as well.

Jake had a fun day today.

He had some music therapy




decorated a Christmas tree for his room:


and even saw some sites around the hospital:


We usually take a couple walks around the hospital each day to see what is going on, get our legs moving, and simply to get out. Tonight was extra cool....
Tonight we were decorating Jake's Christmas tree that Leslie brought over for him. She added some candy canes to add a little extra pizazz to the tree's limbs. Jake put a few canes on the tree then said to me matter of factly:

"I want to go give these to the other sick kids."
So as we walked tonight, Jake took his box of candy canes and passed them out to people he saw wishing them a Merry Christmas!

This was definitely a touching moment, as not only I teared up by his actions, but so did some of the receivers of his candy canes. I am unsure if they were weepy at the sight of a sick looking boy, being wheeled around in a wagon with "things" stuck to his head, or if his actions were simply that touching. But none the less, I think the kid captured the true spirit of Christmas.

He never ceases to amaze me.

"Let us remember that the Christmas heart is a giving heart, a wide open heart that thinks of others first. The birth of the baby Jesus stands as the most significant event in all history, because it has meant the pouring into a sick world the healing medicine of love which has transformed all manner of hearts for almost two thousand years... Underneath all the bulging bundles is this beating Christmas heart."
-- George Matthew Adams (The Christmas Heart)

update from Cook Children's

We are ending our second day here at Cook Children's in Fort Worth. The doctors, nurses and staff are simply amazing and really know how to take care of us. No wonder Jake LOVES coming here.

Yesterday Jake was hooked up to the leads for a veeg, video eeg. The purpose was determine if Jake really needed another dose of steroids.

We did the timeline and made a connection to the nocturnal seizures starting back up in September to the time we were given generic Depokote. The math added up and we all had our suspicions that the generic was the reason for the mass return of the beast!

The night after the cluster of seizures on Monday morning, Tuesday. I did not see any seizures for Jake. This was also the first night I started back with the "real Depokote." The neurologist wanted to make sure the switch back would not "solve the nocturnal tc problem." I was very hopeful.

However , last night Jake had 7 tc's. This morning Dr. H reported to us his findings of the veeg that night. They were not at all what I expected. I don't know if they were what anyone expected for that matter!

The eeg was worse than it was when we were released last April after a 10 day hospital stay. Continuous spiking was present almost constantly and Jake's background slowing had not improved either.

This was a shock, because Jake appears SOOOOO much better than where we were last Spring. He has not had a drop or jerk since then. He has not had to wear the helmet and his cognition has improved tremendously!

The neuro compared Jake's brain activity to a tv that has constant static. Almost as if Jake is trying to break through the static constantly, as if walking around in a fog. He was greatly impressed that he functions as high as he does with these readings. I wanted to say "that's right , Jake is our fighter! nothing is going to hold him back!"

Because of the veeg results, we started another round of steroids today. I pray that this is our Christmas miracle and we will be able to See the boy that we love at his FULL potential. Who would ever have known that he is not anywhere near his "a" game. I can't wait for the day that we see him at his best and he is able to "bring it!"

I know he will get there, for this we pray. Until then I will continue to learn and grow every day from watching my little man conquer the many obstacles set before him! He truly is my hero.

The Lord will give strength to His people; the Lord will bless his people with peace. Psalm 29:11


We went down to the atrium today to hear a band play. Jake LOVES bands, so he was mesmerized by the musicians and their art.


After the production, he swore he heard Santa coming.

ON the eve ....

of Jake's hospital stay, things got real bad.
At about 3:30 am, I heard a gasp over the baby monitor (apparently I conked out before I could get him and bring him to our bed). I ran to get Jake and , as I suspected, he was seizing.

No biggie, this happens.

about 20 minutes later, he seizes again.
I fumble around in the dark to find his magnet, but it stops before I can actually swipe his chest to stop the seizure.

About 15 minutes later, another seizure.

This pattern goes on for about a hour and half. Jake seizes, I swipe and turn to go back to sleep.

However, there was not much sleep being had last night.

Between 3:30 and 5:00 Jake had 7 or 8 tc's. Each one with growing intensity and length.

At about 5 after 5 when another one started, I made the executive decision to dust of the ole' Diastat box. I had no choice but to give Jake a good dose of the Valium like medicine to stop these damned seizures!

The Diastat did work and Jake drifted off to sleep like baby. He slept several hours past his normal rising time of 5:45 or 6:00.

There was no way I was leaving him today, so we both took a day off, if you can call it that.

The hospital stay tomorrow can NOT come soon enough.

I am so looking forward to getting up and making the drive, however TERRIFIED of what the night before then may bring.

If you have faith as a grain of mustard seed, you will say to your
mountain, "MOVE!" and it WILL move... and NOTHING will be
impossible for YOU!
- Matthew 17:20

The Good and the Bad and the NASTY beast!

Let's start with the bad, as it's always fun to cover it up with good!

Jake has been having a really difficult time with nocturnal tc's, night time grand mal seizures. He has been having anywhere from 2-6 a night, mostly every night. So gone are the days of even dropping him off in his room and me picking him back up when he is sleeping. He now just starts in our bed and stays there until the first crack of morning light and then the Energizer bunny is up and going!

I was ok with just the night time seizures, however, on Wednesday I picked the kids up from school to go see Santa. I was changing Jake's shirt in his classroom. I took off his filthy sweatshirt, turned to reach for his crisp,clean, Santa approved shirt and heard it!

The sound of his head cracking on the tile floor.

There he was convulsing right there in the middle of his preschool room. The place of peace, fun and learning for him.

He convulses and I feel like I just stare down at him, unable to help. It was heart breaking to me, to see his classmates, be so compassionate and innocent, as they watched their peer do "strange things" right in front of them. They of course, thought nothing of it. They were inquisitive, but when asked to go play somewhere else, they obliged and went on about their business.

I so wish , Jake was able to just move on and go about his business. He does in his own way, but for adults who witness such events, he is never the same kid in their eyes.

As I finally, got on the floor to hold my baby, he tried to come out of it. The sweet boy tried his hardest to tell me "he had a good day, and took a good nap." His words were barely audible and were made understandable only by a mommy. He then proceeded to try to speak, with a fat, slurred tongue "that he was ready to go see Santa!"

So that's just what we did!
I took my little guys to see Santa! Santa makes everything better!:-)

Although, Jake appeared alright, I couldn't muster up enough bravery to let him walk on his own, or even stand in line by him self. I guess that anxiety will never go away!

I feel like the nasty beast knows that we are trying our best to kill him with another hospital stay and steroid treatment on Tuesday. That's why he is fighting my poor little man. We will kill you beast with whatever measures it takes! You will not continue to control our lives forever!


The good!

Tuesday night we were invited by Jake's heart filled wish givers to join them for a cookie decorating party! It was a blast! The kids had so much fun. We were joined by another MAW family. The kids all got along great and had a wonderful time playing together. The kindness that comes from these girls hearts , never ceases to amaze me! We are so thankful for all they have done for our family and for wearing my little ones out(see picture below)!


Yes, he is dipping sausage in frosting, and going back for more!










straight tuckered out!



"With your eyes full of tears you see clearer;
And with the weight of the world you find strength."
-Zara Rullman

Happy Thanksgiving!

Happy Thanksgiving! We are so thankful to be where we are today in our new life with Doose Syndrome. Jake has come so far and we have been educated on so much the past year. Thank you to everyone who continues to keep us in your prayers. The power of prayer is truly amazing. Check out where we were with this darn Epilepsy stuff last November. and where we are now! I can't believe that he was able to walk on stage by himself. Sit on stage and I did not fret about him falling face first onto the floor! God Is good! Remember God's bounty in the year. String the pearls of His favor. Hide the dark parts, except so far as they are breaking out in light! Give this one day to thanks, to joy, to gratitude!” Henry Ward

quick update

Matt took Jake to the Neurologist in Fort Worth on Wednesday. I had called a day before with questions and concerns and gave Matt a big list of things to ask.

Dr. Hernandez was more worried about Jake's nocturnal tc's , than apparently we had been. He scheduled an appointment for December 17th. If Jake is still having seizures at night we are to be admitted to the hospital. We had inquired about another IV steroid treatment , as it seemed to be our saving grace last April, when Jake was averaging 100-200 seizures a day. The child was having more seizures than he wasn't. We were admitted to the hospital for about 8 days and given the iv treatment. Since that day Jake emerged from the 9 month "walking coma" he had been in for so long.

The seizures lessened, the drooling let up, and the little man's personality returned to us! After a couple weeks we even were brave enough to take of the darned blue helmet!

So I am very torn about the thought of another iv treatment. I saw firsthand how this sort of treatment can help and am very anxious about how it may improve even his current condition. However, this will entail a 4-5 day hospital stay. Which will release us a day or two before Christmas. I am nervous for the side effects, the aggression, and the swollen appearance that comes with steroids.

I want him to be able to remember this Christmas as a very Merry one. Last years was riddled with knots on the head, stitches and seizures.

We do trust the Doctors at Cook's very much and know that they truly have the best interest of our little man at heart. So whatever decision they make, we believe it will be the best for our Jake.


"The first time you're broken, you don't know you'll be healed again, better than before."
Sharon Olds

Staples and seizures!

This has been a wild and crazy week! Jake got to bring home Mo, the class pet. It was great fun watching the kids interact with Mo. Jake even got to show what a great role model he could be. We ventured into Gap one afternoon. This sort of errand is usually nothing less than a MAJOR beating. Kids running, shoes flying, clothes falling....major beating to say the least! This particular afternoon, I gave Jake the job of showing Mo how to act. That had to have been the best Mommy -Idea I have ever had! Shopping was actually peaceful, as Mo and Jake sat by a wall and counted bananas, or whatever it is that monkeys and boys do together. I didn't actually care what they were doing, because I knew I didn't see them running or hear them yelling!

Mo went to the park with us,

and even got to take a trip to the ER.

Jake once again found himself with a laceration. He apparently go into a fight with a wall, while trying to wash his hands at school. However, this time it was not in the usual spot, the chin. Now it was the side of his head. So stitches wouldn't do the job, we had to call in the big guns...Staples! I think he is trying to make sure we are always on our toes!

Jake and Mo were troopers. neither of them shed one tear or even flinched as the staple gun pierced into his head. I can't say the same thing for me.:-)

;

Jake apparently loved the experience so much that he was most upset when I told him we were done and it was time to go. The twerp wanted to spend the night!

The good news?! I am assured that he fell, simply from the grace his mommy gave him and this was not a seizure!

The bad news? Jake has been having many seizures during the night, Or nocturnal tc's. They are not lon genough to even use rescue meds, but long enough and plentiful enough, that I once again drag him into our bed late at night, as to get a better nights rest. As opposed to running down to his room, when the monitor emits even the faintest of sounds.

Please pray that these seizures stay hidden at night and that this is not the sign of the damn beast trying to rob our house again.

Be content with what you have, for God has said, "Never
will I leave you; never will I forsake you." So say with
confidence, "The Lord is my helper; I will not be afraid."

- Hebrews 13:5,6

a week late- oops

Geez, I notice the trend on all the blogs recently....I promise to get better about keeping up! I must do it. Life is just whizzing by and you're missing too many great things!

Lets go back a week and let me introduce you to Sir Jake and Lady Addison!


Halloween, as always, was an awesome adventure! The kids, and Matt and I, had a fabulous time!
So completely different from last year.
Last year we did have a great time, don't get me wrong, however circumstances were completely different.
Last year at this time Jake was having multiple seizures a day. He was drunk on drugs, and needless to say the anxiety level was quite high! Jake cruised the streets last Halloween in a stroller. When we allowed him to get out, one of us was right there either holding him, or close enough to him to catch him when he fell. We worried about drops, about crowds, about excitement, about strobe lights, and mostly about him getting over tired.

Although, there was a little anxiety this year, in regards to his stability. Halloween 2009 was much more relaxing than the year past.

We headed out quite early to a street a couple blocks away that is notorious for their extreme decor. The area is riddled with police officers controlling traffic and crowds, kids running to and fro, and ghosts and ghouls a plenty.

Jake was so enamored by the the look

of everything he wouldn't even carry his own treat bag. I overheard once even telling a candy giver, "No Thank You!"
The kid was so excited to be able to run without too many restrictions he could care less about the candy.

He slayed dragons.



and even fought Kings.

My heart fluttered as I watched him run, laugh, sing and play! My little man has come so far and I am so proud of him!

We had an awesome Halloween 2009!

Every day I look at something different around the house that "takes me back." Whether its the overflowing bowl in the cupboard with the numerous failed drugs that only made my son sicker, or the calendar noting the seizures and the timeline to wean on and off a new drug.

Many times it is his pull ups that he still loves to wear. I can't believe my 4 year old went back to diapers after not wearing them for so long.

The highchairs that kept him confined to his seat to eat so he wouldn't fall over and the baby monitor that sits on my bed side table, so I will be able to hear even the faintest sound.

Our little man has come so far! I am so proud of him! Many days I can't believe where we have been and I can only imagine where we will go. I can only pray that we Will never go back to where we were before!

"God moves in a mysterious way
His wonders to perform;
He plants his footsteps in the sea,
And rides upon the storm."

God Bless~ Christine

"I am not brave today"

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

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

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

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

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

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

He walks all the way to the end.

stares out for a second.

Gives me a thumbs up.

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

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

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

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


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


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





Finally, it was time for dinner!


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

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

God Bless~Christine

Surf's up!

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

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

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


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

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

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




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


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

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

God Bless~ Christine

WISH 100- Ink Party

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

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

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

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

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

Jake was able to meet other wish kids. This is the group that attended the event. Notice Jake is the only one wearing his t-shirt? He wants to wear it EVERYDAY! He loves it and calls it his special wish shirt!
Unfortunately, we were unable to make it to the actual ride and after party the next day, as we left super early the next day to start our beach vacation.

It is so amazing to me, the efforts people will give to make another happy.

We are so blessed to have a team sponsor Jake's wish.

So blessed to meet the kind hearted people that give their time to make Jake's wish special.

And so blessed, that the Beast has decided to back off , at least for now.

Jake is a fighter and is hopefully kicking his butt so hard that he won't want to show his stinkin' face again!

"For today and it's blessings, I owe the world an attitude of gratitude."

God Bless~ Christine

VOTE for Jake!!! please go to http://family.go.com/gapcastingcall/?cmp=OTC-Gap-Gapcom-HPBanner-Entry

search for my kiddos using the name peters528. You can vote once a day!

We are back!

We are here in Santa Rosa beach!

we are tired, cranky, and ready for bed!

But we are here and so far seizure free!!

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

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

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

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


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

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

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

Watching or troubles go to the sea.

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

God Bless~ Christine

OINK, OINK

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

I called the Hogs alright.

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

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

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

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

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

Stay tuned for the takes of the shoot!

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


God Bless~ Christine

where do we begin?

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

I will start with the freshest tears on my mind.

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

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

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

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

Pictures from the awesome event! Thanks Anna and Joanna!

Hmmmm, how do I even start this portion?!

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

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

We made sure to hydrate the rats.

They rode some rides.(I have edited this a million times, but dont know why it is not showing.)

and they danced the polka.

We had the twerps in the double stroller, on grass, or seated at an event table all day. We finally made our way to the face painter, as Addison BEGS to get her face painted. I swipe the rats out of the stroller to pick their poison, that is, the ink that will transform their cheeks.

Just as I do this, I hear the most God awful THUD! Like a sledge hammer hitting concrete! I am sick! The pit of my stomach still aches from that sound. I assume I was getting tickets or money to pay for the monstrosity that will take over my kids faces. I didn't actually see him hit the ground, but was right beside him.

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

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

I cry.

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

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

I continue to cry!

At this point I am sooo not concerned about the effing seizure, but about the hit his head took.

His head, thankfully is NOT bleeding, but has a knot and blood blisters or "blood dots" all over ,the size of a golf ball.

I cry.

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

Lord please don't let this "break through seizure" be a sign or what we may see in the near future.

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

God Bless~ Christine

big news and showers!

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

Better us than the twerps, though!

We had a couple of big phone calls this week.

The first being:

Jake has a sponsor for his wish!

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

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

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

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

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

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

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

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

Hello?! Of course we would!

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

Such amazing opportunities!

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

In Jake news:

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

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

Jake was up all night long.

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

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

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

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

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

Jake now takes showers by himself.

God Bless~ Christine

Better than swimming...

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


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

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

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

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

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

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

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

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

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

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

I lay there and prayed.

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

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

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

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

I said, It is indeed, it is indeed.

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

Joshua 1:19

God Bless~ Christine

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

School days!

Wow! What a fun, exciting and exhausting week. I can't believe it has been a week since the last post. I have many things to "blog" about, however will save tonight for the "back to school post."

The kids LOVE school!

Don't get me wrong, there were days of many tears, both from the kids and me. Many long meetings, including ARD's, planning and informing about sweet Jake, and of course many a penny spent on all the back to school supplies, gear, and extras mommy just knew they "couldn't survive without!"

Unfortunately, I have been having huge camera problems, so these are the best pictures I could come up with to capture the all important milestone, that is "the first day of school."

I can't believe, and am sooooooo grateful, that I was able to be there with my little kindergartner, as she walked through the halls of her first "real school."

I can't believe, and am so grateful that Jake was able to be there with us, and also walk into his own classroom.

The keyword here being WALK!

It was just this last May, when he was not "allowed" to walk. Allowed, because, as soon as I would let his precious feet hit the ground, his head would soon follow in a seizure. Si I didn't let him walk, infear that we would land ourselves back in the er for more stitches, as we have done so many times before in the past year.

Jake walked, skipped, ran into his brand new school!

We are blessed!

Dear Lord, it's such a hectic day
With little time to stop and pray
For life's been anything but calm
Since You called on me to be a mom
Running errands, matching socks
Building dreams with building blocks
Cooking, cleaning, and finding shoes
And other stuff that children lose
Gitting lids on bottled bugs
Wiping tears and giving hugs
A stack of last week's mail to read
So where's the quiet time I need?
Yet when I steal a minute, Lord
Just at the sink or ironing board
To ask the blessings of Your grace
I seen then, in my small one's face
That you have blessed me
All the while
And I stop to kiss
that precious smile

God Bless~ Christine

summers over?

Tomorrow starts the first day of school for my babies. The first day of kindergarten for our dear Addison Mary, and the first day of full day preschool for little Jake, since the seizures started.

We had tons of fun this summer. We went to the Dallas museum of Science and natural history, soccer camp, swam many a day, hit the library, visited spray parks, and went on many walks including picnics. The following are just some of the examples we had an awesome summer!

We had so much fun! I will definitely miss my sweet angels. I would probably rather stay at home with them all year, HOWEVER, being able to go back to work this year, knowing where we were at last year is an amazing blessing! I pray that we can keep up this "awesome run" that we have had!

I am blessed and thankful for each day!

"Some people are always grumbling that roses have thorns; I am thankful that thorns have roses!"

God Bless~ Christine

Poster boy?

Back in April, when Jake was going through a very difficult time and seizing 100-200 times a day, we had to stay in the hospital for a week and 1/2.

It started out as simply an overnight stay so I thought.

A day grew into 3 more days, which turned into a week, which turned into more days.

I will not complain, as that week, seemed to "fix" Jake.

"Fix," totally, no.

But "fix" from seizing more than he wasn't, YES!!!

While we were there, I tried to keep Jake busy, so he wouldn't go crazy and most importantly so I , nor the nurses, would murder him.

10 days in a hospital with a 4 year old on drugs is not pleasant.

Jake and I took many wagon rides round the hospital, to different floors, the lobby and the prayer garden.

On one trip, Jake was asked to be allowed to be photographed. I obliged, as it is the very least we could do for the compassion, kindness, warmth, and knowledge Cook Children's has given us.

Last week while at our regular scheduled appt., Dr. Hernandez informed me that the Marketing team was outside and wanted to do a video and more pictures with Jake!

I am unsure, how that really went down, but I like to say that they knew Jake was there and wanted him for the pictures. So they took a video of Jake getting a "fake" immunization. They also took several still photos as well.

Ironically, The always active and never sit still boy, was dumbfounded. He did not say a word, which was alright as it will be recorded over, but appeared to be almost shy!

Turns out, the child was disappointed, yes disappointed and upset, that he received a fake shot and not the real deal!

The kid LOVES shots!

The other day I told Jake he had to go get blood dawn and he shot the BIGGEST smile and exclaimed "DaDAY?!" (today) I said yes, if he went to bed and napped real good! he immediately went to sleep, and the first thing he said upon waking was, "Can we go?!"

The lab techs, didn't believe me that he would be ok getting blood drawn. Therefore, they brought in the masses to try and hold him down.

The child extended his arm, asked to tie the rubber band to make the veins appear, and even "slapped" at his arm to make the veins appear.

They inserted the needle to draw the blood and the kid laughed! The techs were amazed! or maybe even appalled!:-)

Here are some photos from the first marketing event!

" in the end it's not the years in your life that count, but the life you put into those years."

Abraham Lincoln

God Bless~ Christine

Hope!

So after all the bad.

Not saying that it instantly got better, and I did leave out many of the daily details.

For instance, having to hold Jake up and spoon feed him while we have family dinner, propping him up with pillows so he could sit to watch tv., translating my 4 year olds language to others, even family, carrying burp clothes around because he drools so much and he needed to be wiped as much as a baby, and even transitioning from being potty trained to wearing diapers, to name a few. We are now at a much better place.

A better place thanks to Dr. Hernandez and the other absolutely wonderful and caring people at Cooks Children's.

We still are dealing with many issues.

For example Jake's hair is falling out. The boy that was almost known for his thick white locks, is losing his hair.

He is very impulsive, to say the least. At any time, any object may be hurled at our head.

He stills stumbles around, and his speech is still slurred.

I have a very difficult time noticing it, as I think we have come soooo far. However, when we go to get an eval. at Our Children's House, an awesome organization. They tell me our son not only qualifies for occupational therapy, but also speech therapy and physical therapy.

When did this happen? When did the tables get turned?!

I am the one usually conducting the ARD meetings. Now I am on the other side of the table and instead of me suggesting how I can help other peoples children. They are telling me what they can do for my child!

It is strange. It is hard. And is is even heartbreaking. Let's face it, who thinks they'll ever have a "special ed" child? However, it has made our family so strong, so forgiving, and so open.

For this I am thankful.

Jake is still having seizures. Thankfully, not atonic, or drop seizures, and not myoclonic seizures.
These seizures greatly impacted his quality of day to day life.

But, he is still having the tc's. The seizures I was TERRIFIED of, to say the least. The seizures that I made Matt stay home with me every morning until 10 or 11, because I was petrified of him having them with me. I did not want to stick medicine up his butt, I did not want to see his eyes roll back in his head, and I did not want to pray to God from them to stop before I had to call 911.

I left that to Matt.

Jake is having tc's. I don't know exactly how frequently, as we have been trying to give him space, as well as live a normal married life sleeping in our own bed without little feet and hands.

We still use the monitor, but I simply can't stay awake all night, so I may be missing something.

The past several days, though,Jake has been having a couple tc's a morning.

The doctor. Not the nurse, but the doctor , called Friday evening, as we were on the way out to a Hibachi grill with Matt's parents.

He asked me how things were going? I immediately said the same thing back to him.

How often does the neurologist call you personally? NOT OFTEN!! I was taken back and assumed and was certain he was going to tell me something I did not want to hear and did not have the strength to handle. He did not tell me all this bad news. It was not great news, but not as awful as I expected when I sat myself on the floor and braced myself against the kitchen counter.

He informed me Jake's "levels" were pretty high. His Depokote level should be 50-100., and Jake's were 143. He suggested that maybe this is why I am still witnessing incoordination in Jake and even maybe why his hair is falling out.

The solution? Drop some meds. As scary as this is, I am ready for it. I hate the side effects almost as much as I hate the seizures.

I can deal with the tc's in bed, but I would hate for the drops to comeback. Please pray for this change to be a great one for us.

We are two days going on our decreased med, and so far all is great.

I pray that this stays the same, as school starts tomorrow

Handsome boy, even with black teeth from all the falls.

He can eat by himself, we didn't know if we would ever see that again!

He can sit by himself! (he usually sits with one hand propped behind him to stablilize himself so he doesn't fall.

To keep a lamp burning , we have to keep putting oil in it.

Mother Teresa

God Bless~ Christine

You're Fired!!

I am going to try and update as best as I can and as quickly as I can where we were last year at this time.

It is about to get hairy, as the school year is getting underway. Besides me resuming my responsibilities as a special eduction teacher, Addison will be starting Kindergarten and Jake will be starting prek full time as well.

August 5th, 2008

We had Jake transferred to Children's Medical in Dallas.

Jake loved the atmosphere much more and was much more willing to cooperate with the nurses and doctors in this kid friendly atmosphere.

Jake LOVED the fish tank

The first smile I saw in over a week...needless to say I was a blubbering mess

They ran more tests and promised "tomorrow" we would go home.

However, tomorrow kept turning into another day, as his seizure types kept changing and/or increasing.

Finally, after 4 or 5 days taking up residence in downtown Dallas we got the ok to leave, but not without telling us:

"Jake's a very complicated case."

This did not make me feel much better, when taking this new child home with no nurses, iv's, doctors, and emergency care always on hand.

But, they did give us Diastat, the emergency medicine. I did feel MUCH better armed with this little weapon.

Right before we were walking out the door, Jake starts throwing up.

The nurse came in and advised us to wait a couple hours, let the doc check him out again and then we can go.

On the way home, Jake throws up in the car 2-3 more times.

We get him inside , cleaned up, give him his meds and the boy starts losing it again. He can't hold anything down, most importantly, he can't hold his medicine down.

So, Matt and I load him back up in the car and head to the nearest ER. Apparently Jake had picked up a virus at Children's.

The doc at the er gave Jake anti nausea medicine and another iv of his Depokote, so his little body can actually absorb it and we may be able to get some sleep.

( jakes littlehand says it all, in the er hooked up to the iv)
The next morning, we wake up tool around for a little, and Jake needs to go potty. I take him potty, not yet knowing what the heck a "drop seizure" was.

As I watch him going pee-pee, I witness him lose all muscle tone.

He falls straight down, chin hitting the edge of the commode and his little head flinging backward onto the tile floor.

Yep, here goes another ER run.

8 stitches and a cscan later we are able to go home.

Little did we know this would be the first of 12 sets of stitches in the same place in the next year.
FIRED!

LOng story short...hopefully.

Our pediatrician is adamant that we need to get back in with our neurologist a follow up appt.

Our peds. office even sets up the appt.

The day of the much anticipated nuero visit, I get a call 3 hours before.

They tell me I can't come in today.

We set up another appt. for the following day, however at their other location 1 hour away.

I load Jake up, who at this time is having HORRIBLE side effects of the new meds taking over his body, in Dallas rush hour traffic and head out.

We get to the appt. and are surprised to be the only ones in the office.

After waiting nearly a hour, our nuero walks in.

The first question she asks is:

"Why are you here?"

Dumbfounded, I respond that, as if she needed to be reminded, that our pediatrician recommended, we see her right away, as Jake is still seizing uncontrollably and it is pretty scary, and it may make us feel better, if we could control them.

She then informs me, she can't see us anymore.

I am absolutely dumbfounded!

I muddle up, trying to fight back, tears, rage and that growing lump on my throat, Why?


She tells me that there are "too many people involved!"

I tell her " too many people? this is my sons brain, his life!"

She informs me she knows and that's why she can't see us, BUT she will see us for 30 more days and order blood tests for tomorrow because Jake is still having so many seizures we need to see if there is room to increase his meds.

I walk out, feeling like a lost puppy, carrying home my dying cub, with now hope in the world.

I cried, bawled, and screamed the whole hour home.

However, I was a little encouraged that she would be our doc for a couple more days so we can get these meds figured out.

I drag the kids out of bed early, early the next morning, so we can be the first people in line for the blood work.

We were not the first, or even close to it.

However the other patients saw how much Jake was seizing, and it probably freaked the out a bit, so they us go ahead of them

I was supposed to hear back by 12:00 about the results, so I knew if I could Jake more of his afternoon dose or not.

I waited, and waited, however the call never came.

I called and left message after message to the neurologist office and never ever heard from them.

So here I am , with a seizing boy, no neurologist, no new meds. and no where to go.

I tought I would never make it past this point in my life, however through the support of family and friends and the great Lord above we are here today. This is an example of the unwavering support that has been shown to us during this very trying time! A letter from a friend:


I just wanted to take the time to point out to you and Matt how far you have come. It is soon to be the anniversary of the beast's appearance...that's 365 days that you've made it through. 365 breakfast's, lunch's and dinner's... 8,766 hours...52 weekends. Amazing and remarkable. You have still eaten ice cream, you have fished, swam, rode bikes, got up on ski's, tubed, strolled for Epilepsy, raised money for charity, gone to the beach, hung out with friends, birthday parties, girl's nights and have shown me and countless others... what Epilepsy is. We are all more aware. We are smarter. We are passionate and we all realize the tremendous need for more research and awareness. It is contagious, this desire we all have... to get Jake better and all of those that suffer.

You should be proud of your marriage, proud of your families and proud of yourselves, for I bet you none of you thought you were going to make it through ONE day. Now you can say you've almost knocked out 365 of them.

I love you both and your sweet family and I am glad that I am on the "list" of friends you turn to when you need something. Don't ever cross me off...etch it in stone, if you can.
Love, Brandy






God Bless~ Christine

August 5, 2008

Matt scooted off early to work.

I woke with Jake by my side.

We talked to each other for a bit.

I then put on some show on Disney and went to go get ready.

We were taking muffins and cookies to the fire stations that had helped Jake.

As I was washing my face, I heard it.

The huge gasp!

I ran into the bedroom and saw, Jake seizing again.

The neurologist sent us home with no emergency medicine, so there was nothing i could do except hold him and talk to him.

After about 4 minutes I called the nuero's office and asked what I should do. Should I bring him in to them or call 911.

They told me I could make an appt., they didn't know what to do.

Hello?!!! my son is seizing now!! What do I do?!

After a couple more minutes waiting for answers, I hung up with them and my mother in law and I decided to call 911.

the minutes ticked by, 7 minutes, 8 minutes, 9 minutes.

I believe the paramedics made it to the house at minute 11 and Jake was still seizing. However, I quit counting.

He was still seizing as we loaded him in the ambulance.

We rode to another hospital and prayed they would find anything to answer the question, as to why he is seizing so much.

They did spinal tap, which turned out negative, and decided he needs to be checked in again.

After several calls to our pediatrician, and our neurologist.

After waiting hours for the neurologist to show up, Matt and ,along with friends, and even my dr. (ob/gyn) made the difficult decision to transfer Jake to Dallas Children's. (our , so called, nuerologist never did show)

Leaving, yet another hospital, still with no answers.

Jake with Tracey eating Rosie's yummy cookies!

God Bless~ Christine

August 4, 2008

Today we finally get to leave the hospital! Yeah!

There were no findings, no results, no answers, but we could go home.

I guess in the car and signing the dismissal papers, I was just happy we were leaving and had no clue what we were in store.

Doctors are supposed to help you, give you answers, and talk you through the problem.

The only thing I really remember hearing was "We just don't treat seizures in inpatient."

I wanted to look at this neurologist, take her neck in my hands and literally wring it.

"yes, you have told me, you don't treat seizures inpatient! then make them stop!!!"

Saturday, July 2, 2008,was pretty tough, as Jake was already pretty drugged that previous night, in order to make the seizures stop. Then Saturday morning, he had to have a MRI.

This could have been the most miserable experience of my life. The techs were literally fighting with each other, I hear them yelling at my son to lay still, and it takes FOREVER!!!

They bring Jake to us and inform us they had to give him more drugs, because he wouldn't lay still. At this moment I was certain, his little body would simply shut down. He did not speak, sit, or eat for at least 16 hours after this.

The tears and the emotion that day, almost led me to pull him out of the hospital right then and seek treatment somewhere else.

Actually, I think Matt and I said we were going to do that, but at this point we were sooo terrified of big seizures, aka, tc's, we were too afraid to travel to another hospital with him in our car.

We were afraid of the unknown, as we still had not been educated at all about what was happening to our precious baby!

So Monday night, we were finally released from the prison, some call a hospital.

Jake had a great time when he was awake enough, sober enough and not seizing every minute. "til this day the kid LOVES hospitals and can tell you details about every nurse and every detail of every hospital he has been at.

My iv, this is where I get my meds

Waving goodbye to the hospital, with my VBS shirt in hand.Best friends reuniting for the first time in 4 days!

God is our refuge our strength, a very pesent help in trouble.

Psalm 46:1

God Bless~ Christine

August 1st, 2008...enough said

I remember the sun shining through the blinds, and thanking God that Addison and Chad had not decided to climb in my bed in the middle of the night. One kid's knees and elbows in my back all night were quite enough for me.

I remember it so distinctively.
I turned towards the window to roll out of bed to make the morning bathroom break.
I remember exactly how the room smelled.
What I was wearing.
and even my thoughts, that I couldn't wait to "go" and then come back and get some cuddle time with Jake.

My feet didn't even hit the floor, when I heard the strangest sound and then the bed, almost violently shake.

I had remembered a similar incident a couple years earlier when the space shuttle blew up over East Texas. It was similar in the respect of a bed doesn't usually shake like this, but different, because I didn't hear "that sonic boom" I heard a couple years earlier, and I knew something was very amiss.

I turned back to the bed, only to see Jake flat on his back. His toes stiff and pointed inward. His arms jetted out, hands stiff and curled in.

his body was violently jerking uncontrollably.

Then my eyes made their way up to his head.

The most distinct "clicking noise" was coming form his blue mouth.

His eyes were open, but rolled all the way back in his head.

I slightly remember trying to shake him "awake."

I then recall being on the phone, almost calmly asking my mom, if I should call 911 or just let it pass.

About this time I see his lips going from blue to purple.

I immediately hung up with my mom, called 911, and called Matt on the other phone.

The rest is a blur.....For what ever reason I do remember some female cop in the house, along with what seemed like a million other people in uniform, telling me to get dressed and get my purse (lord knows what I was or wasn't wearing). I heard her, but it didn't sink in that I had to go anywhere, because I didn't want to walk away from my baby even for a second. I then remembr her looking at me again, as my precious baby was being wheeled out on a stretcher, with tubes from his arms, telling me I had to get my purse.

It then hit me I had two other kids in the house, I couldnt leave!

Next thing I knew, my sister in law was in my house and I was being loaded in the ambulance with my helpless son.

Somewhere in all this I guess I had called her to come get Addison and Chad.

Jake didn't wake up or make a sound until we were being unloaded from the stretcher and into the er.

The rest was a blur of tests, cat scans, "pokes",and eeg's nurses and doctors.

What seemed like 3 days was actually only a day.

We were released that evening at around 10:00 pm, as the neurologist made a point to keep telling me, "we don't treat seizures inpatient."

My brother said it best "they sent you home like he was a new puppy, here have fun with this." no instructions, no medicine, no treatment.


Apparently Matt had caught an immediate flight back to Dallas, because he was there with u s majority of the day and was there to take us home.

We put Jake to bed and within 5 minutes "they started again."

Seizure after, 5 minute seizure. About the 3rd or 4th time I called back to the hospital and they told us to come back in, because we needed to be checked back in.

Jake was heavily doped up and finally was able to sleep peacefully without seizing. I think he was the only one catching any z's that night.

The Lord is my shepard Ishall not want. He makes me lay down in green pastures; he leads me beside still waters.

He restores my soul. He leads me in right paths for his namesake.

Even though I walk through the valley of the shadow of death, I fear no evil; for you are with me, your rod and your staff- they comfort me.

You prepare a table before me, in the presence of my enmies, you annoint my head with oil; my cup overflows.

Surely goodness and mercy shall follow me all the days of my life, and I shall dwell in the house of the Lord my whole life long.

Psalms23

God Bless~ Christine

Poopoo on the potty party- July 31, 2008

Jake did it! He finally poo-pooed on the potty!
He had been going peepee on the potty for a while now, but poo poo was a little harder to master after one unfortunate incident not to be named at this moment.

Well, he finally did it and was consistently "doing it" for several days, so even though Matt was out of town, we had a party for him, at his favorite spot, Joe's Crab Shack.

His 4 cousins, his aunt Lisa, Addison, and I all met for dinner, or rather in the kids eyes, an awesome play date at a cool park covered in sand.

Towards the end of the adventure Jake fell face first onto the concrete deck. This caused a huge black and blue swelling in the middle of his forehead, little did I know it would be the first of many.

At this point, we decided to take the kids back to our house for some swimming and dessert.

We had an awesome time and were surely appreciating the days of summer, swimming, sugar, friends and family.

We danced to Mama Mia most of the night!

Finally when it was too far past the kids bedtimes, we said one more song and we all jammed out to Dancing Queen, before we headed off to bed.

Jake came to bed with me and Chad, Addison and Jake's cousin, went to sleep with Addi in her new trundle bed.

It was an awesome memory! Lisa and I spoke of it that night...how cool this was for the kids to experience such closeness and such fun with their family!

I don't care how poor a man is; if he has family he is rich.

M*A*S*H

God Bless~ Christine

Wednesday July 30, 2008

Today was the first time that I heard from the neurologist.

I met some teacher friends at Melissa's house for a lunch catching up with some awesome mentors and great friends I have met while teaching at Apollo. Again, I mention Melissa, because we really don't socialize on a casual basis, however she is a fine Christian woman who always seems to be there in very important times in my life.

For some reason I find that ironic. I am unsure why i feel that's ironic, or why she has been there at the most trying times of my life. Maybe because of her great Christian faith and I know she is praying for our peace and for Jake's recovery.

Anyway, we were all sitting at the table enjoying a yummy meal and the phone rang. How rude of me to have the phone at the table,but I knew I was expecting this call.

It still seems so weird to hear the words that came out of my mouth, but I excused myself by saying, "sorry, Jake started having seizures, so hopefully this is his neurologist."

What? Did I just say that? my son just started having seizures?

I remember the wide eyed looks at the table, as if I just said my mom died. When I came back to the table, i felt as if surely there was an elephant in the room.

However, I dismissed Jake's seizures as nothing at the time, so the elephant really didn't bother me one bit. He and Addison were at school, so Jennie and I went to catch up some more.

We got an appointment set up for Monday August 4th...almost a week away.


God Bless~Christine

if today....

was a year ago, I would be rushing Jake into the pediatricians office.

I described on the phone what I was worried about and they thankfully got me in in a matter of hours.

The ped. was concerned enough, to have her office call and try get Jake a nuero appt. ASAP.

ASAP, apparently meant whenever they got a chance to look at the books.

It was several days before I heard anything about an appt.

This should have been my first sign!

God Bless~ Christine

soo annoyed?

I had no other title for this, other than I bet you are all so annoyed that the previous titles have to do with a year ago.

this one does too.

Sooo...a year ago today my sister in law and I , took my mother out for her birthday to see Mama Mia and then to Neiman's for their awesome food, specifically their popovers! yummo!. While there we saw an amazing woman that I shared a classroom with my first year of teaching, have come to be great friends with and even randomly saw her at a friends funeral the the other day. I think Melissa was placed in my world for a reason. I am not quite sure yet exactly why, other than her being an amazing person, but the way I run into her in random parts of my life and met her is astounding!

Her and her husband write amazing books by the way. I give them for most baby and wedding showers...check them out!
http://www.amazon.com/s/?ie=UTF8&keywords=harry+h+harrison&tag=googhydr-20&index=stripbooks&hvadid=1149735341&ref=pd_sl_8598lr5wl2_b
(I apologize for putting the amazon site up, but thats I really all I know how to do. you will not be disappointed if you buy these books either!)

Anyway, so we go see mama mia, have an awesome meal at neimans.
I go out to my car and notice a flat tire. Not the kind of flat like I can drive, but really flat, like I need help pronto!

is this a sign?

So I rescue Matt from the twerps, as I believe, he had a golf date, and my wonderful father goes with me to fix the car, as my mom watches Addi and Jake.

All this time, I am feeling uneasy.

Besides the fact I never get flat tires, and Jake has had weird "episodes" the past few days...I feel a "storm coming on." I don't know how to explain it, but I really did.

We got the car fixed. Picked up the kids and went back home.
I tell Matt, please rock Jake and let me know if you see anything strange.
He rocks , maybe 2 minutes and I hear "Christine, come here!"

"yes?" while running into Jake's "cowboy room."

"he did it!"

"he did what?"

"what are you talking about"

"he totally straightened up, was stiff and shook"

This was only a few seconds, but completely foreshadowed our life to come in the next week or two, if not the next year.

Wait on the LORD: be of good courage, and he shall strengthen thine heart: wait, I say, on the LORD.(Psalm 27:14)

God Bless~ Christine

There really is a reason for the car story, Melissa and Mama Mia.....more to come;)

board games

A year ago yesterday, I noticed Jake's second seizure.

Matt was out of town. The kids and I spent a full day swimming, so we decided to have a nice relaxing evening playing some board games and watching movies.

Addison and I were on the floor, when Jake got up to do a "happy dance," or something of that sort for making a winning move in the game.

As he stood up he almost immediately fell tummy down on the board game, flopped for a brief second and then was up.

Again, my first reaction was to get angry with him for ruining our game setup.

I , again, started to interrogate Jake about his actions....

That's when i saw "it."

That look in his eyes.
He had no clue what had just happened and he was just as confused and dumbfounded as me.

This time, however, I did find it strange enough to call my mom and see what her thoughts were.

Since Matt was coming home the next day I didn't call him, but just decided to watch Jake and monitor him for anymore strange events.

A year ago today....

Jake had his first bloody lip from the BEAST.

He was sitting at the kitchen table eating a happy meal from "Uncle Donalds."

I was right next to him, probably swiping some fries, when it happened.

In a quick instant his head jerked straight forward into the table.

When he looked at me with accusing eyes, as if I had slammed his tiny face into the furniture, his poor little nose and lips were covered in blood.

This was the first of many bloody events caused by this damn beast. If I only knew then would would transpire over the next year.

For a righteous man falls seven times, and rises again. [Proverbs 24:16].

God bless~ Christine

a year ago..

today, is the day I noticed Jake's first seizure. Hindsight, I believe he had some before this day, but today was the first time I saw one staring me right in the eyes.

I took the kids to Costco, to find some retreat from the Texas summer heat. We did this about once a week. Most of the time we would not even buy anything, just take in the awesome things they had to offer and maybe even snack on all the samples for lunch.

Jake and Addison had just received an orange smoothie sample. We then made our way to the book aisle so the twerps could look at all the wonderful reads out there.

Right as we pulled next to the first selection, it happened.

Jake's arms flew back and his smoothie went flying.

It was certainly a brief second in time. A brief second that would transform the way we live and most certainly the way we interpret life.

My first instinct was to get angry at Jake for flinging his smoothie and almost hitting the pristine books waiting to be purchased.

Then I saw the look in his eyes.

I interrogated him for awhile.

I asked him "what happened?"

"Jake, did you do that on purpose?"

"why would you do that, that's naughty."

The kid was dumbfounded and his eyes told me the truth.

He had no clue what had just happened!

I quickly took the kids home and didn't tell anyone what happened, not even Matt. I dismissed it as nothing.

Nothing, however that "nothing" set a bad taste in my mouth for Costco and I believe it was not until maybe 3 months ago that I got the courage up to set foot back in that mega supermarket!

Hindsight, i think there was another incident a couple days earlier.

I was at Lifetime, getting my workout on with Abrea and Ms. Sarah. Then it came.

The dreaded teenager entered the studio. Dreaded, because everyone in the room knew somet unexpecting parent was going to have to cut their workout short, as their child either needed a diaper change, is crying, or got hurt.

It had been almost 2 years since I was the victim of the "call" and had to make the trip down the stairs to pick up my child, so I was smiling to myself waiting to see the poor soul who had to miss burning those extra calories.

Here she came...headed straight to me!
NOOOO... I only need about 15 more minutes!

I get down to the childcare center and there is Jake full of blood.
I ask another teen, what could have happened and I saw it.

That teens eyes were as big as saucers. Just like I would see in Jake a couple days later.

It did not hit me until mid September or November that this incident was most likely a drop seizure.

I will never forget the look in that lads eyes. The same exact look Jake gave me in Costco.

I still have yet to be back to the gym.

The Lord is my rock, and my fortress, and my deliverer; my God, my strength, in whom I will trust; my buckler, and the horn of my salvation, and my high tower. (Psalm 18:1)

God Bless~ Christine

tears

I laid down with sweet Jake tonight and this is what he said to me , as he wrapped his small arms around me:

"Mommy, I prayed real hard tonight. I prayed that these stupid seizures would leave my head."

"I asked him for no more pokes, and no more rides in the ambulance."

"I don't like to see you cry mommy, why can't these seizures leave me alone."

"I don't want to go to the hospital again, mommy...will I have to go again?"

As a mother this is heartbreaking! Why can't I help my son ?

I fear "they " are coming back.

I have been extra anal asking Matt and my mom what they notice in Jake. They reassure me, he still seems great. I am not so sure. His words tonight make me feel as if he feels something coming on.

God Bless~ Christine

wow!

I can't believe where we have been and where we are now! the following pictures don't even slightly capture the extreme, as this has all happened in the past couple months. And this is when it, the seizures, haves been "good."

This is Jake before steroids and during over a week hospital stay. Approx. a week before his 4th his birthday.

Jake on steroids.
and Jake now.

Wow, it is amazing how life changes right before your eyes and you don't even notice, as you are too caught up in "everything else" that is not as important as the things that really matter!

God Bless~Christine