Happy Birthday Baby Boy!

Happy Birthday Jakey!

I can't believe almost your entire 3rd year has been plagued with seizures, medicines, hospitals and inconsistencies.

We pray this year brings you new beginings, wonderful blessings, and outstanding memories!

We Love you!

WELCOME TO HOLLAND

byEmily Perl Kingsley.

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel.

It's like this......When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy.

You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice.

You may learn some handy phrases in Italian. It's all very exciting.After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands.

The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland??

I signed up for Italy! I'm supposed to be in Italy.

All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease.

It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place.

It's slower-paced than Italy, less flashy than Italy.

But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips.

Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there.

And for the rest of your life, you will say "Yes, that's where I was supposed to go.

That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

"When you feel like giving up, remember why you held on for so long in the first place."~ Unknown

God Bless~ Christine

Pictures, practice and parties

Wow, this past week has seemed like 2-3 weeks.

I can't believe we actually stayed in the hospital for 6 days!

I "checked in" for what I was thinking going to be a day or two....6 days later we emerge into sunlight.

What a transforming week.

We were admitted to the hospital per doctors orders, as Jake was seizing 100-200 times a day.

Most of Jake's seizures looked like this:

http://www.epilepsyoutreach.org/# (click on watch Emmet's story)

He was seizing more than he wasn't.

Jake was admitted to the EMU (Epilepsy Monitoring Unit at Cook Children's). He entered with one dear girlfriend, a emu eeg tech, and left with many! He fell in love with many pretty nurses and even admitted to them "I can have more than one girlfriend." He had a couple male nurse s who he later named stuffed animals after.

(First day after connecting the "leads" for monitoring)

One morning Jake awoke and the first thing out of his precious mouth was, "When do I get to be a doctor?"

Jake amazed everyone at the hospital during is stay, as he knew all the technical names for the procedures he had done, informed nurses what to do, and watched with excitement as he was poked and given MANY iv's. The day before he even assured his aunt, "It's ok if you give me the medicine in my booty." (the dr. advised us to give him the Diastat as Jake was having "cluster seizures" and we needed those to stop in hopes to prevent brain damage.

Jake had many visitors, one being Uncle Mike!

After several days of seizing, the doctor, finally agreed to let Jake "free" from the monitoring, and the "leads" were taken off.

Aunt Tiffany agreed to take Jake outside and see the sun! The patient refused to sit in his wagon, but rather pull it behind him.


Jake loved the feel of the water, soft, and slow falling from the fountains at the prayer garden.
He told me he wanted to sit and" feel the sun(Jake's words)", after days in a cold, damp, dark hospital room.

He made a bird's nest on Earth Day.


and was even visited by therapy dogs

We left the hospital after having 2 AMAZING seizure free, clear thinking days and headed back home. Jake rested a few hours at the house and then hit the much anticipated TBall practice!

The weekend brought his own birthday party!


His first view from his new clubhouse!

Jake driving away "leaving seizures behind!" (notice the helmet in the bed of the truck)


Although we had a couple really good days upon leaving the hospital, Saturday was pretty scary. By 10:00am, Jake had already logged over 70 seizures. He was only up 3 hours at this time. I finally, at 11:00, made the call to the nuero on call to seek advice. He recommended a minor med change. Apparently this minor change has worked wonders.
Jake had an awesome day yesterday and today at school.
Today's seizure log, that I am given every day upon picking Jake up in car pool, read "GREAT DAY!"
Do you even realize the last time I read such wonderful, amazing, and encouraging words!?
Besides the fact , his seizure activity was obsolete, Jake was kind, loving, and his personality was back at school.

No one at school, I believe, has seen Jake's TRUE personality. The boy the Matt, Addison, and I knew and loved. The drug free Jake. The side effect free child. The boy who doesn't appear to have major special needs.

Our son was back, at least for today!

I praise God for today and pray for many more like this!

Thank you to everyone for your thoughts, prayers, support, and patience.

"The Lord is gracious and full of compassion, slow to anger and great in mercy. The Lord is good to all, and His tender mercies are over all His works." (Psalm 145:8)

God Bless~ Christine

Home sweet Home!

We are home! I have a lot to update and pictures to add.
Thanks to everyone for the thoughts and prayers!
The many visitors and gifts were much appreciated both by mommy and Jake!

Let them give thanks to the LORD for his unfailing love and his wonderful deeds for humankind (NIV)

Psalm 107:8

God Bless~ Christine

Nada, zip, nilch

Here we are a week before Jake's birthday and I have nothing planned!
Nada, zip, nilch
My sister in law and I had planned a big party with bounce house, cake, water guns , the works for this weekend ,as her twins, my niece and nephew, Jake's cousins, are a year to the day older than Jake.
However, I kind of backed out on that a couple weeks ago , as Jake's seizures started getting worse.
Besides the fact, Jake would be in a constant seizure, my stress level would be through the roof trying to chase him around the backyard, keeping him away from the pool and off the concrete.
Jake is not able to climb.

The fun at the party includes, jungle gyms, forts, and a bounce house you climb and slide down.

Jake has increased seizures when over heated.

The party was to take place at 3:00 in the afternoon with an expected high of 90.

Jake's seizures are also associated with sleep of lack of sleep.

3:00 is when he usually sacks out for his second nap.

So now I am left with a birthday boy, who has been locked in a hospital for a week, and no plans for his party.

Suggestions are welcome for this awful mommy who has had no time to think about how to make this day extra special for her little boy.

"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."

Jeremiah 29:11

God Bless~ Christine

P.S. in all of this I always have said "It's worse for us than it is Jake, He thinks he has always been like this." This morning upon waking he states to me "I climbed at Disney World, I am going to tell that doctor I can climb!"
We went to Disney World slightly over a year ago and apparently Jake does remember not having the restrictions he has now. As heartbreaking as this statement was, it was also soo encouraging that he does remember and that his level of cognitive thinking is still there!

Didn't

I didn't think I would have the energy to blog tonight, but I find it hard to concentrate and enjoy on my shows this evening, as I watch Jake sleep in the hospital bed next to me.

Jake and I came to Fort Worth on Thursday for a check in appointment with Dr. Hernandez, as Jake's seizure activity had a tremendous increase this past week. He advised some therapies to get us through the evening and if things weren't any better to call in the morning and we would probably have to check in.

Friday morning came. I recruited my mom over early to be another set of eyes for me, as I have sadly become so accustomed to seizures, that I wasn't sure what was "better," worse" or "the same." She advised that 10 seizures in the 10 minutes she had been there ,probably was not normal and that I needed to call the doctor's office.

I called, and as expected we were asked to come to the er at Cook Children's and check in.
So I made arrangements for Addison , as Matt was still out of town, and Jake and I made the long wet, trip in the pouring rain.

We arrived in the crowded er and were instantly whisked away to a back room where we waited to get a room upstairs. The wait was actually quite pleasant, as the nurses and doctors showed amazing compassion and understanding for or situation. I certainly didn't expect that after seeing how busy the emergency room was upon our arrival.

We are still here and will probably be for a couple more nights.

I didn't expect myself to be able to leave Jake's side, however I asked Matt to stay the night last night so I could get a good nights rest and spend some time with Addison.

I didn't want to leave, but thought it would be the best choice for my kiddos.
Addison, Babi, Papa and I met for Italian food. I took Addi to an ice cream shop. We then planned to have a girls par-tee and bond a little, as I told her what an amazing big sister she is.

Well, we didn't make it past 9:00!
We didn't have to spend 10 minutes chasing Jake around the house to give him his meds.
I didn't have to make the trip a millions times down the dark hall to Jake's room to check if he was ok.
I didn't stay awake all night by the blue blur emitting from the video monitor, begging me to get a closer look at Jake.
I didn't have to break up fights over bed space in the middle of the night, as the twerps struggled over the ideal sleeping spot.

I didn't get up and out of bed before 8:45 this morning!! It has been since August, that I have slept past 6:30 am! I logged a full 12 hours of sleep last night and could not feel better.

Although, last night was amazing, I didn't know my heart would ache so much being away from Jaker-doodle and not being able to help him.

I didn't know how heart breaking all of this was to Addison, until she kneeled in bed, in the darkness of the room and begged God to make this stop happening to her brother. For him to quite "busting his chin," having seizures, and staying the night away from her.

I didn't know how much my arms longed to carry Jake to and from the restroom again.

I didn't comprehend how hard it would be to tell my baby girl goodbye once again and that I didn't know when I would be home.

Finally, I didn't realize and still can't fathom how many people are reading about us, praying for us, and helping us get through this bump in our road!

The power of prayer and awareness is truly amazing!

Be strong and courageous. Do not be afriad or terrified because of them, for the lord your God goes with you; he will never leave you or forsake you.

Deuteronomy 31:6

God Bless~ Christine

Back at Cook Children's

Christine decided yesterday morning, Jake didn't seem any better. Per doctors orders, she returned back to Cook to check in for a couple of days. They are in the process of weaning Jake off of Bansil, which they are all in agreement, MAY be the one causing all of the seizures. His body should be rid of this drug by Monday, and they will have a good idea of what to do next. The VNS device is also going to be turned up from the 12 seconds it is currently set at. As for the meds, Jake will now be on only 2 medicines, which will be a first for him. This is a HUGE step, as Christine has been pretty adamant that she did not want him on so many at one time. It just seems like too much and she is afraid of what the mix of all of them are doing and could do.

If I hear anything, I will post more. Keep the prayers coming, as it is not over yet.

One more thing, Jake's "case" has apparently caught the attention of the Epilepsy Foundation and the Neuro's at Cook Children's. Christine will have to tell more about it, as I only have bits and pieces. Not sure what it all means, but it sounds quite exciting. What a special boy!

Update

Christine and Jake have returned home from Cook Children's. They have set the stimulator to activate every 12 seconds and have stopped taking the AED they began on Friday. From tonight until tomorrow morning, if Jake seems the same as he was at the hospital, they are to return back to Cook Children's,check in and stay over a few nights. Dr. Hernandez seemed quite worried and did not like what he saw when he observed Jake, but could tell the stimulator was doing it's job and helping. Now that it is set for every 12 seconds, he is hopeful it will help even more. That, along with stopping the "new" med should get him back on track. They may then be able to pinpoint the cause for the increase in seizure activity.

Keep your prayers coming, don't stop. Pray for the same things as mentioned in the previous post. Knowledge, patience, answers, care, strength, hope and peace for the Peters'. Peace that they are doing God's will and choosing the right paths.

On bended knee, prayers are needed...

This is Brandy, Christine's friend, updating the blog as they are en route to Cook Children's in Fort Worth. They have an appointment with the neuro at 1:30pm. Jake is not doing as well as hoped. Although Christine's previous update (prior to the Century Club post)spoke of improved clarity and a decrease in seizures, they are back and with a vengeance. The past two mornings he has woken up with "tons of seizures and multiple TC's". To remind you a "TC" means TONIC CLONIC (Grand mal). Her little Jake falls unconscious, muscles tensed, and falls down on the spot. This is the Tonic Phase. Then his muscles will contract and relax rapidly, causing convulsions and his eyes roll back. That is the Clonic Phase. Imagine witnessing this and just counting the minutes on your watch to see how long it lasts. If I remember correctly, she has clocked one at 11 minutes before (maybe even 16). Can you imagine? Gut wrenching. After the convulsions cease, he will fall into a "Post-ictal sleep". He has had 3 of these, as of 9:30am this morning.

Please pray for strength, the doctor's knowledge, patience, courage to ask questions she may not want to know the answers to, a plan, a backup plan, Christine's extended family, Jake's caregivers, Addison, anything and everything that will help JAKE. Is it a diet, medicines, a mix of medicines, surgery? What? What is it going to take?

On top of all this, we also hear Matt has been in the ER in Houston with a major bug, vomitting and what have you. He is expected to come home tonight or tomorrow.

I will update as I get information. There is power in prayer and we know HE is listening. All 4 Jake.

Century Club

We have made it to the Century club.

Jake logged 100 or more seizures today.

I got a call from Jake's school, asking "what was going on?"
I replied "you tell me."

I was informed that Jake has had over 80 seizures while at school. Mind you this is a matter of only a few hours.

I immediately leave class to "observe" Jake , so that we can all be on the same page, as to what a "twitch," a "tremor," "tc," and "drunkeness" truly are to each of us.

I was there about 5 minutes and witnessed Jake have multiple seizures.

What the heck?! Especially, because his mind has been soo clear lately. He seizes and then is back where he left off. He remembers many things, talks more clearly and his mind is very obviously more "with it."

So what's with the damned seizures?

The hardest part about this, is that you look to doctors to help. Your trust is 100% in them to help, fix and save your child. As a parent you will do anything, and I mean anything, to keep them from harm, pain, and suffering. I, however, feel like these drugs that are to be helping and fixing our Jake our making him sicker.

Why can't anyone "fix" our precious boy?"

Although it has been 9 months since all of "this" has started, and I NEVER would have imagined us still be "here,"I have faith that it will change.
This is all for a reason.
And I will be a better mother, wife, sister, daughter and person because of it. There are too many people praying for us for that not to happen.

I should have known not to blog good news..this always happens to us when I blog happiness.:-)

Thank God for my mom, and Jake's teachers, nurse and support staff (basically Jake's caregivers). They are so loving, patient and understanding, when all of this is soo hard to understand myself.

"To have faith is to be sure of the things we hope for, to be certain of the things we cannot see. It was by their faith that people of ancient times won God's approval."

Hebrews 11:1-2

God Bless~ Christine

Surgery

We did it.
We awoke at 3:30am Good Friday morning to make the trek to Forth Worth for Jake's VNS surgery.

Jake was a trooper to say the least!

The kid did not mind one bit, the pokes, the tests, and all the doctors and nurses running in and out of our room.

At about 7:30 the neurosurgeon came in for our last minute consult. After he answered all of our questions,he had one for us.

He asked "Can I pray with you now?"

I was blown away, to say the least.

At this moment all my anxieties and fears were lifted.

I have not felt that much peace in a long while.

Dr. Honeycut, then left and our wait began.

He had another surgery before Jake's. So we waited while nurses and anesthesiologist continued to add drugs to his iv. Finally, the moment came. We were forced to say goodbye to our little champ. We kissed, hugged and kissed him some more as the nurse rolled him away from us.

We waited for what felt like forever for them to tell us Jake was ok.
The doctor finally emerged a couple hours later with the wonderful news that all is well and we will just have to wait a short time to go see Jake.

More waiting...and we finally got back to see our hero.
He lifted his head once and said mommy and then drifted back to sleep.

we waited, encouraged him to awake, and waited some more.

We were told we could take him home when he was awake and that should be about 30 minutes to a hour.

We have now waited almost 2 hours and he still wouldn't awaken or stay awake. A couple times I thought surely he was back with us only to find myself grabbing bags so he could throw up.

We were finally able to arouse him awake several hours later, however he was not himself.
Jake would not smile, move, talk, or show any emotion.
This continued for a couple hours before we had 2 anesthesiologist over us, informing us this is not normal and we may need to stay the night.

In true Jake form, Jake showed those dr.s he was not staying another night. After some teasing from Granny, Jake was awake and doing well. We finally got to go home!
We are at home now, 4 days after the surgery and things are really going well.

Jake is a drunken soldier, as he was on much Valium at the hospital and we started a new AED on Friday, BUT the seizures have seemed to really decrease!
His mind appears to be really clear and his thinking skills are amazing!
I pray that this is just the start of something good and new.

What better of a weekend to celebrate new beginnings for Jake!

Easter weekend!

He has Risen indeed!

"He is not here: for he is risen, as he said. Come, see the place where the Lord lay. And go quickly, and tell his disciples that he is risen from the dead; and, behold, he goeth before you into Galilee; there shall ye see him: lo, I have told you. And they departed quickly from the sepulchre with fear and great joy; and did run to bring his disciples word. And as they went to tell his disciples, behold, Jesus met them, saying, All hail. And they came and held him by the feet, and worshipped him. Then said Jesus unto them, Be not afraid: go tell my brethren that they go into Galilee, and there shall they see me."-- Matthew 28: 6-10 KJV

"The great gift of Easter is hope - Christian hope which makes us have that confidence in God, in his ultimate triumph, and in his goodness and love, which nothing can shake."-- Basil C. Hume

God Bless~ Christine

(the incision and a "bump" where the device was implanted)

Package, Protective Pig, postitcal and prayers

Yesterday, as the kids and I went to check the mail, the front glass door was propped open by a package.

How fun are packages?!

The kids and I gleefully, bounce back into the house without checking the mail to rip open the surprise that awaits us.

I notice it is from a dear friend from high school. Fortunately we are back in connection with each other and share the most amazing emotional bond right now that I never would have thought was possible. Unfortunately it is seizures that made us reconnect. I have always said God has a plan for this beast he has given us, and I truly believe reconnecting with Joanna and her family is one part in his ultimate plan.

Before I can peer into the box and see what magic awaits, the card falls out so I read that first. I then dive into the box with a face full of tears.

I see the most beautiful plush pig. Jake instantly grabs him, kisses him, and introduces him to "Woody!"

meet Hamlet

I will paraphrase the awesome card that accompanied Hamlet, as I know Joanna would surely hire a hit man to take care of me, if I even remotely quoted her.

Hamlet was Joanna's as a baby.

He is 30 years old.

Joanna gave him to her son when he was born.

Hamlet has accompanied Joanna in many trials, tests, and surgeries in her life. He also was bedside with one of her friends as she underwent Chemo for Hodgkin's disease.

Joanna is tumor and seizure free and her friend is cancer free.

Joanna's son says Hamlet makes him "brave."

He told his mommy that he wanted Hamlet to stay with Jake and make him better.

So we now have dear Hamlet the Protective Pig on loan in hopes that he will make Jake better.

We are on the eve of Jake's surgery.

We were just loaded up in the car to take Addison to soccer practice.

I just buckled Jake in and "IT" happened......

his eyes rolled back

his arms jetted out

his legs shot

his feet turned inward

and the grunting began

I watch and time "it" for a couple minutes without it subsiding.

I decide to unbuckle him, and carry him inside.

I call for Addi to follow me and to bring my purse that I had just loaded with the "butt medicine" to take to practice

3 minutes

4 minutes,

5 minutes

I think "it" is lessening so I decide not to inject the Diastat that I have already prepped.....
6 minutes and we are still not "fully" done.

I am panicking, then, finally it happens, Jake lets out a smaller groan, and is finally responsive to my nails on the arch of his feet.

His is now postitcal, with the pig, next to me, as I type.

Please pray for the surgeons tomorrow. Please pray for our strength, please pray for the success of the VNS (Vegas Nerve Stimulator.)

And hope does not disappoint us, because God has poured out his love into our hearts by the Holy Spirit, whom he has given us.

Romans 5:5

God Bless~ Christine

Bruised but not broken

The past couple days have been pretty rough for Jake. He falls, wearing the helmet numerous times. He reopens the "flappy gums," busts his lip, bruises his cheeks, and then does it all over again.

After several times falling and laying in puddles of his own blood he lifted his head and said ," Is this why you don't want me to be near hard things?"

This is a picture of his face last night...unfortunately it looks a little worse this morning, as his lip is about 3 times this size now.

Addison decided to grab the camera last night as Jake continued to have seizures in my arms. She did a pretty good job capturing the realness of our evenings( not Jake looking at the wine...that is Jake having or just have had a seizure).
However the kid always seems to bounce back as if nothing has happened and he hasn't had too many seizures to count that day. He resumed his silliness, by emerging from the restroom, donning Addi's abandoned gymnastics leotard(backwards). (Matt is so proud!)

I informed Jake that he can take gymnastics, but boys don't wear leotards. He continued to order me to sign him up for gymnastics and they won't care if he wore a leotard, because some boys do!

"By perseverance the snail reached the ark.”

Charles H Spurgeon

God Bless~ Christine

Strollin, Strollin, strollin

Wowzers!! What a fantastic, overwhelming, exciting, tiring, and way too short weekend!

The outpouring of love and support was absolutely AMAZING at the stroll!

This was our team "All 4 Jake." In this picture there were even several people missing. The love that has been shown for Jake and our family is truly amazing! I was so overwhelmed at the event, I was so sad I didn't get to talk to more of our dear friends. The day seemed to fly by and lying in bed that night I couldn't wrap my head around why people would want to be there for me and my family. I felt guilty that I couldn't sit and spend good quality time with each and everyone of you. However your support, kindness, donations and PRAYERS are always on my mind and they are not forgotten!

Jake even had a Panther crew take a bus out to the event. They made their own shirts and even brought some "lil' Panthers to be!" Thank you Deighton, Jodi, Melissa, Kelan and Ashley for your support. I have told you before, you think this was little simple gesture, but you have absolutely no clue how touching it is to us! Thank you!

The kids had an awesome time. When we drove up to the the zoo and they saw the entrance, they literally started screaming at the top of their lungs. I was astonished by the line waiting to get into the event. All the hundreds of cars were there to support Epilepsy Awareness. I was overwhelmed.

I still am overwhelmed and my writing is surely reflecting that(in a negative way). It has been one long, tiring, and all too short weekend.

After we met for pictures Jake was able to go "behind the scenes" and feed the Galapagos tortoises. The kid showed no fear. I was a little afraid, as the turtles snapping mouths were huge and were all to close to my kids and me.

After the event, it was go time for me. Matt and I sped home, I hopped in the shower and Matt put Jake down for a much needed nap.

I hosted a baby shower for Mr. Cole Edward Cornstubble and his mommy and daddy. That again, was an awesome time. I was able to see the gorgeous mommy to be and many friends from high school!


After the shower I raced home, changed, kissed the kids, and again ran off to for dinner at a friends house. We had set to meet, because there were many fiends in town for the event and the shower. We rarely get to see each other so we planned and very much looked forward to this evening. By this time we were all exhausted, however managed to stay up way past our bed time, laughing, crying and reminiscing.It was an outstanding weekend! I can't believe the people I saw, the support that was given, and the great times spent with friends and family. I wish it could happen more often.
I wish it could happen under better circumstances.
Why does it take an illness like this to get everyone together?
Why don't we all appreciate life more in the first place?
I now see life in a completely different way.
Maybe this is a lesson the Lord is trying to teach me.

As far as Jake goes...It has been a very rough week. As the days, hours, minutes pass, the seizures seem to increase. Today it seemed as is every couple minutes there was some sort of seizure activity.

This makes me so sad, mad, and desperate for treatments.

I find my self wanting him to to just sleep and nap all day, because I can watch him peaceful in slumber.

I don't have to stress about leaving the room, how close he is to a hard object or piece of furniture, and don't have to carry him around trying to avoid injuries.

What kind of quality of life is that?

Sincere Thanks to everyone who was able to make the event, donate to the foundation, and who keeps us in your prayers.

We had a fantastic weekend and held our little ones a little closer with each hug.

We hope you did and will continue to do the same.

Above all else, know this: Be prepared at all times for the gifts of God and be ready always for new ones. For God is a thousand times more ready to give than we are to receive.

God Bless~ Christine

check it out!

check out this link...a little awesomeness...

talkaboutit.org