J a k e

J a k e
at the beach in Destin

Jake's story

July 21st was a normal day, as were the days of summer before. Everything was in it's place. School days were approaching and the family was enjoying the last days by the pool, ignored bedtimes and high popsicle counts.

Then July 22, 2008 came....

Jake had his first seizure. I did not recognize it as such. It was not until he had several more of these "little jerks" and bloody noses that I thought this could be seizure activity. We were scheduled to see a neurologist on August 4th, after going through our pediatrician, however we didn't make it that far. I was awakened August 1st, by Jake in a full seizure (6 minutes long)...he started to turn blue so I called 911....

Here begins our journey......

...we were taken by ambulance to the hospital. Checked in. Released. 3 more grand mal seizures after being released. Checked back in. Sent home 3 days later. Another grand mal, this one lasting a whopping 11 minutes and taken by ambulance again. Stayed at Childrens Dallas for a week. Upping meds, changing meds and mixing meds.
Diagnosis: Epilepsy
Cause: Unknown
We have now found, through some absolutely amazing family and extended family, whom I will NEVER be able to thank enough, the wonderful doctors and nurses at Cook Childrens Hospital in Fort Worth, who are continuing to help us through this. We have had another grand last thursday, and are averaging anywhere from 5-30 seizures (jerks, drops, stares) a day. I was to begin back teaching at Apollo, but am having to put that on hold until the seizures are controlled. Jake is not able to go back to school until he is 30 days seizure free. We are still waiting for that ONE day. Please pray for our family and for little Jake. Although this is not the end of the world, it is a huge hurdle we WILL overcome. Pray for courage for Jake, understanding as parents, good doctors and for the right medicines.

Jake's mom, Christine


Monday, September 29, 2008

Today's blog is a celebration of the ordinary. The "small things" that we take for granted everyday.

This is a small journey through a day in Jake's life as he searches and finds the gifts of ordinary life.

Upon waking he will sit and have breakfast, as I try to turbo charge myself with much java. We then head out for our morning walk.

On our walk we watch, observe and talk about many things. One of the first things we usually see, is Spud the duck. Spud is a pet of a neighbor. He loves to play tag. Spud literally goes and tags the kids and runs until they tag him, then the process is repeated again. As you can imagine Spud is a sure hit in our day.

We walk, talk, spell, and play "I spy" on our hour walk. This is the low hanging branch that the hawk appeared on. Amazing isn't it?!

One of the many dandelions we pick and wish upon on our trip. I only wish I could hear that little wish inside his head. I know his probably much smaller than mine.

We see signs of all kinds....literally. Jake now can spell Stop, and he also knows it is a red, octagon. He will then proceed to tell me an octagon has 8 sides and you can remember it because ocho means 8 in Spanish and "ocho" sounds like octagon. I was telling his older sister this once on a walk and apparently he heard it and caught on. The kid is amazing.

Addison, Jake and I always play the "slugbug" game in the car. This is a slugbug that sits in the school parking lot by our house. He now knows that it will be there everyday, so as we turn the corner and the slug bug is not even in sight,he proceeds to yell "SLUGBUG!"

As we 'round the corner of the school. I let Jake strap on his helmet and run through the fields to get some of his, much built up, energy out. I have now started taking a soccer ball, or baseball bat and baseballs with us.
Today I gave Jake the extra special treat of actually stopping at the playground we have frequented so many times before and never once gave a thought to. Maybe this is how Jake is able to "ride the garage door" to the top.

This is an example of something he has climbed soo many times before. I look back at pictures and he was climbing these types of structures, with grace, at around 12 months! I now walk around following the same little boy, as if he is that 9 month old new walker.
And finally, before we get Addison and the second half of our day starts, Jake gets down for a nap. Yes, this is how he really sleeps!

When we finally get Addi, his best friend, they hug their hellos and tell each other how much they missed each other. Addison then proceeds to ask Jake "How was your day?" They talk pre-school talk for about 30 minutes until they are finally sick of each other again and the whining starts back again.:-)
After errands and cooking dinner, the kids sit down for dinner, as I wait for Matt to arrive.
After, a long, educating, stressful, and always entertaining 13 hours, the kids...and Matt and I are finally ready to hit the sack. This is a typical Peters' day, but if you know the Peters, it doesn't stay "typical" for very long.
We have logged many miles and hours on our walks, but it really isn't until recently I have stopped and seen why the kids actually want to go on these exercise adventures with me. There are so many beautiful, new and intriguing things out there, that I have always taken for granted. I know, cliche, cliche, and I have been one to easily quote "he only gives this to people that can handle it," "Don't sweat the small things," " take time to appreciate every little thing." However, I feel like I am finally "getting it! Am I totally there now? Of course not, and who knows if I will ever be completely.
I do challenge everyone of us, though, to stop, let your kids walk on the curb, as if it is a balance beam, let them play 5 more minutes at the park, sit in your lap 10 more minutes, even though it is "bedtime," and let them stop to pick, even the ugliest of flowers.
The hustle and bustle of this world overtakes us all, but it is the little joy and sparkle in "the small things"that our children see, I have now come to appreciate.....finally..after all these years of it being preached.

God Bless~ Christine

Sunday, September 28, 2008

I sent my daughter to a party on the wrong day! Yes, that's correct. I thought Matt was going to be out of town still, so a couple weeks ago, when one of the never ending birthday invitations, once again appeared in Addison's "cubby" at school, I called my dad to chauffeur the princess. Even at that time, I said Sunday at 5:00. I had it so set in my head "Sunday at 5:00," that apparently I never went back to double check the invite.

This party has been behind many bribes all weekend, the child, with freshly wrapped present in hand, newly washed and combed hair, complete with a big pink bow and cowboys t-shirt, sat in the front window starting at 3:00 awaiting her 4:30 pickup. I can't believe I did this! Well...actually I can. The absolutely worst part, you ask?! I didn't realize I had sent Papa and Addison to a party location on the wrong day. It wasn't until Papa called 30 minutes after the party had started to inform me as such. He then continued to tell me they were fine, because they were attending another party at the same location. Papa and Addi are the "Pre-K party crashers!" Plano beware!

Jake has had a great weekend! Besides the fact, that today Matt and I were both about to run for the border, he has had low seizure activity and the side effects of the meds has been pretty good until the recent hours. I think he is overly tired and all this "stuff" is catching up with him, as it is all of us.

The kid has been a TERROR! I swear he is bound and determined to bust these stitches open again before their removal tomorrow. It all started on our way out the garage for our walk. I push the button to open the garage door, Jake runs out, as I am trying to juggle,the phone, his emergency meds, and the ipod. He reaches the door just in time to grab a hold with both hands and continue to ride the door almost all the way to the top! When we get home Addison and Jake have a contest, or something under the table, on who can flip off the couch the best, climb the window sill to open the blinds, do cartwheels on the hard woods, or hide under objects that a mouse could barely fit under. The anxiety level has been pretty high at the Peters' household This Cowboys' Sunday.

People that know Jake, know that he has one of the most infectious laughs ever. He starts to laugh and within seconds, no matter how much of a bad mood, or sad one might be in, I guarantee you will start to laugh too. It has been very nice hearing this amazing laugh all day today, but I think he might drive us to the loony bin. Luckily we are approaching the 8' o clock bedtime hour.

I think tomorrow is a full moon, and anyone who teaches, I think will agree with me, that can be quite scary!

God Bless~ Christine

PS~ I had not heard about the Matt Bryant story, from the Buccaneers, until today. People have mentioned that my family and I have incredible strength during all this. I think Matt Bryant has the most amazing strength. I can not imagine going out to play and performing to such high standards after what He and his family have just been through. He and his family are deep in my thoughts and prayers.

Saturday, September 27, 2008

The noble Spirit from the heavens, THE HAWK, the messenger of inspiration, brings signs of power, strength, nobility and incorruptibility
Jake and I were taking our morning walk yesterday through our heavily populated, residential neighborhood. I was praying pretty hard, as the week had been really depressing. Watching Jake tremor, drool, and slur his speech was getting quite difficult to watch.
I had just prayed "Lord, keep showing me the signs and I will continue to follow your path." At this moment......A hawk, with a wingspan no shorter than 3 feet, flew to a low hanging branch about 3 feet from us. The three of us stopped and stared at one another for several seconds, before the hawk flew in front of us, and led us down the sidewalk 15 feet and gracefully flew high back into the clear blue sky.
I believe that hawk was a messenger, an inspiration, and a sign. The message... Everything will be ok. Keep having faith.
"When you come to the edge of all light that you know
and are about to drop off into the darkness of the unknown
Faith is knowing one of two things will happen
There will be something solid to stand on or you will be taught to fly."
~Patrick Overton Quotes

God Bless~ Christine

Thursday, September 25, 2008

I changed Jake's slide show music to a song from "Mamma Mia" that I thought was pretty appropriate. Jake and Addison LOVE this soundtrack and know many of the words to most of the songs. Not only is it fitting, as Jake constantly begs to listen to "Mamma Mia", but the title says it all.

"I have a Dream"

Jake, like any other kid has sooo many dreams and aspirations. However, these have changed drastically over the past 6 weeks. They are no longer dreams of "when I get big I want to be a fire fighter" or "I want to go to Disneyland again." Unfortunately they have changed to much simpler things that I and , I bet many, take for granted. He now dreams of climbing up on the playground, going to the restroom with out some one holding on to him, not having to wear his helmet as he walks across the hard woods in our own house, not having to "stay on the grass" when we are on a walk. He dreams of sitting at his dinner table, instead of picnic breakfast, lunch and dinner on towels in the family room, playing baseball "next year", playing hockey "next year", and swimming with Addison. (according to Jake the past is "last year" and his future is "next year")

These dreams have also changed for my family and me as well. We now dream for the day that, the boy who was walking at 9 months and climbing by 10, can walk out of bed on his own, a morning that he won't have 4-5 seizures before he yells "come and get me!", a day when we don't have to use a video monitor, as he plays 20 feet away in the playroom, a day when he can hold his own fork again, or not get frustrated when feeding himself. I am looking forward to a day that I can see all these toxins, we call medication, actually helping his body not harming it.

As parents we dream of so many things for our children. I can not believe how drastically mine have changed.

I will continue to dream and have faith that maybe one day we will wake up from this horrible dream.

God Bless~ Christine

Wednesday, September 24, 2008

Heeee's baaaa-ack!

In true Matt fashion, as the kids and I were leaving to get the special prizes in the happy meal, Matt drives into the driveway.

Those who know Matt and his never ending traveling schedule, also know that he shows back up with out any notice what so ever.

The kids and I are ecstatic to see him and have already sent him on a dinner run. The Madame Alexander dolls will have to wait until tomorrow.

The past couple days have been pretty rough, the waterworks hit at any given moment. Not only has Jake been having "weird" days that are very depressing to watch, but some loved ones are also going through some very difficult times as well. I hate to see anyone going through pain for any reason. I will quote a very wise woman :-) who said:

"Dontcha just wish that conversations with God weren't a one way conversation? Would love to know what he thinks, verbally, rather than trying to figure out clues and signs. Faith is a VERY tough thing to have sometimes, but you gotta have it."

Why is any of this happening to any of us?.....I don't know if we will ever have a straight answer, but it is indeed for some reason, and You have to have Faith!

God Bless~ Christine

Monday, September 22, 2008

We had a pretty uneventful day, thank goodness, so I decided I would do a Peters' Family FAQ's.

Before I start, I will say our seizure activity has been down, however he did have a "big one", tc, grand mal, at 2 am. Our Addison is also the "allstar" this week at preschool, so we are enjoying the doting on Addi time. She gets to bring a movie and snack one day, pictures of her self and /or family and a show and tell every day. The timing couldn't be better for me, as I feel as if she has been passed by the way side waaay too much lately.


1. Are you married or Where's Matt?

YES, I am married to Matt...and yes we are fine! Fortunately and unfortunately he is in a business that feeds off of loss of power, ie..hurricanes. Fortunately, because he gets a lot of work during hurricane season, unfortunately that hurricanes like Ike, Gustave and Katrina have to hit us at all. When all of this started Matt took A LOT of time off work. After our last hospital visit, he went back to work, but fell sick. A couple of weeks and several antibiotics later he felt better, and was able to eat again, but all the while he was up at 5:00am and back home at 6:00 or later and 10 pounds lighter. Welcome Gustave and Ike and 20 hours day. Matt is currently in Houston, living in a trailer, trying to give some major gas stations, hospitals and schools power so the city can some what get back to normal.

2. Is it hard?

Of course its hard. Besides the fact that my son, 5 weeks ago, was more than normal, and we were swimming 8 hours a day, eating ice cream, going to movies and playdates, I am also now a single mom. Yeah its hard, but this is what we signed up for. Matt is working EXTRA hard for his family,our lifestyle, and hospital bills, but most of...because that's who he is. My kids are more than blessed to have a daddy that goes above and beyond because GREAT is never good enough....We have met many obstacles and goals in the years we have known each other, but the strive for better is always there! That's what we want to teach our kids. God Bless Matt and God Bless the people he is trying to help during this devasting time. We miss you!

3. How's Jake?

Jake's great. Besides too many stitches in the past few days, he is fine. He is finally adjusting to his limits, seizures, and over controlling parents. He doesn't know anythhing other than "when I play football next year." "when I play baseball next year" "When I play hockey next year." The kid is a sport-a -holic!

4. Is there regression?

Of course....the toddler bed is now in our room, he now wears "Pull Ups" again, and he wants to be carried EVERYWHERE! The bed in our room, I have to admit, is all me. For the first couple weeks home he was safe and sound in his own room ,but I was getting serious milage running back and forth between his room and ours all night long. Enter the noise monitor...sorry no peace of mind. Enter video monitor...great, but I found my self logging no rem's as I stared at the darn monitor all night long. So I drug the darn bed into our room, hoping Matt wouldn't notice!:-)
Jake still uses the restroom on his own and even when having seizures would not lose control of his bladder, but about 3 weeks ago he started urinating more often when seizing, re-enter pull ups. He wears them all day, but 98% of the time I throw away dry diapers at the end of the day, as he still goes to the restroom his self in the commode.

I know there are many more questions,but I need to get the twerps to bed. Thanks for reading about our "ever changing life." If you have a FAQ please ask!

God Bless~ Christine

Sunday, September 21, 2008

As a teacher I used to love weekends. However after this weekend, I don't know if I can say that anymore.

We started out with a bang! Jake had a great Friday, besides visting the er for 6 stitches (or was that Thursday?), his seizure activity was actually down. He attended his cousins birthday and was even back by 7:30 to watch his last Scooby Doo of the day and be in bed by 8:00.

Saturday morning we woke up to go to Addison's first soccer game of the season. A friend graciously picked up Addison early so I could give Jake his meds and get there by game time. As I walk up to the game with Jake I witness Addi scoring, what I think is the first goal, as I am only 5- 10 minutes late. WRONG that was her third! My little Mia Hamm finished the game scoring multiple goals and was the only one who scored for her team! How much prouder, as an ex soccer player could I be?! We run a few errands, have a picnic lunch, and I put the kids down for a nap.

The rats get up and we prepare to go to another birthday party for Addison, however the parents asked if Jake could attend too, how cool is that? So I shower and go to the play room to check on the twerps, Just in time to see Jake fall face first off the couch and continue to go into a tc, grand mal. So I, wrapped in just a towel , think surely all the medicine he is on will stop this from going long...well about 3 mins into it the activity increased. I then prepare the emergency suppository and give it to him at about 4 minutes. I call the on call dr., as I hear gargled breathing and the seizure still hasn't stopped after the 10 mg of diastat. He advises to call 911. I am thinking "how do I get clothed" at this point. But, wouldn't ya" know it, while on the phone everything subsides and Jake is asleep....so I think. The resilient kid fully awakes about 30 minutes later and says "I smell something nasty!" (the suppository had caused him to go cacadoody) Once again I am dumbfounded...besides most people having a postitcal period of many hours after a seizure, the 30 lb kid just had Valium as well......I guess that nurse was right..."He's a fighter!"

I awake to a "brand new day" today. The kids and I go on a walk, have a picnic lunch, play with sidewalk chalk, and once again go down for a nap.

Jake wakes first, so he and I sit on the couch and watch "Overboard", read and talk....I move to the floor, to be "safe" so he would follow, he reaches for his snack on coffee table and yada, yada, yada, 6- 3 day old stitches out... 4 brand new ones in. Where's the helmet you ask...sitting right by us , on the floor, by the coffee table. Damn those drop seizures!

God Bless~ Christine

PS...Thanks "friend" for taking Addi to the party and thanks "sister" for watching Addison while I once again sew my boy up

BREAKING NEWS - ADA Amendments Act Unanimously Passes House and Senate

WASHINGTON, D.C., September 17, 2008—The Epilepsy Foundation applauds Senate and House leaders for passing the ADA Amendments Act of 2008 by unanimous consent. This marks a historic move toward securing the promise of the original Americans with Disabilities Act (ADA), signed into law by President George H. W. Bush in 1990. Visit www.adabill.com for more information.

This is a major victory for people with epilepsy who have seen their protections under the Americans with Disabilities Act disappear over the last decade,” said Eric R. Hargis, president and CEO of the Epilepsy Foundation. “We salute Congress for making great strides towards strengthening the American workforce.” Former congressman and Epilepsy Foundation immediate past board chair, Tony Coelho, a key author of the original ADA, added, "For those of us with epilepsy, this legislation is even more important than the original passage of the ADA. This bill was primarily focused on correcting our exclusion from the ADA. The Congress listened to us and we thank them!"

"This bill continues our ongoing effort to expand opportunities for individuals with disabilities to participate in the American Dream," said Sen. Orrin Hatch (Utah). "Passage of the ADA Amendments Act ensures the Americans with Disabilities Act will continue to help change lives. I'm proud to have worked with my good friend Tom Harkin in crafting this monumental bill that enjoys such strong bipartisan support." This legislation clarifies for the courts that people with disabilities should not lose civil rights protections because their condition is treatable with medication or can be addressed with the help of assistive technology.

The bill also addresses the definition of disability making it clear that Congress intended the ADA’s coverage to be broad, to cover anyone who faces unfair discrimination because of a disability. In the past, Supreme Court rulings have eroded the ADA, leaving people with disabilities including epilepsy, diabetes, cancer and mental illness without the protections Congress envisioned when the ADA was originally enacted.

(source: http://www.epilepsyfoundation.org/epilepsyusa/news/Americans-with-Disabilities-Act-Gets-a-Boost-from-Unanimous.cfm)

Friday, September 19, 2008

Well, I sit here dumbfounded tonight as to what to even say. The outpouring of love and support that has come from every angle and degree is absolutely amazing! When Brandy(B and Michael, you are amazing) said "hey I really want to do this" I was very skeptical and embarrassed about putting myself out there for prayers and support , as I know compared to many people, we have it good! I am honestly at a loss of words tonight reading emails and comments....God does work in mysterious ways.

Thank You to everyone for all your prayers and support! Thanks to my family for being there at a drop of a hat for all the er trips, car rides to school, soccer practices and play dates. Thanks to my friends, who will pick Addison up to play "because she needs it" instead of our usual "wine night." Thanks to those of you who have been with Jake when he has seizures and you treat him as if he still is a person, instead of the alienated looks, or plain ignorance's we usually get. Thanks for my LTF girls who are "saving" my spot in the front! Thanks to my coworkers who are picking up sooo much extra slack as I try to figure out what our next day is going to look like! (Paula this is you too, as you are in the "fields" doing the dirty work! what would I do without my Paula, unfortunately Apollo, she'll probably NEVER offer to sub again!:-))) "My girls" thanks for all you have done...keep that wine a comin'!
I want to especially thank some family, extended family, the president of Cooks Children's and the wonderful team of neurologists and nurses that have given us the opportunity to find some of the greatest care in Texas, if not the country, for epilepsy/seizures.....thanks to you guys and all the prayers we WILL get this under control!

Look at me I turned into a a regular Oscar winner, can't you here the credits coming on trying to get rid of me!:-)

We did have a great day though. It was my nephew Luke's birthday, So donned in his helmet with chingaurd to protecthe lovely stitches, we set forth to conquer an Alvarez birthday party. This is one of Jake's first outings since all this began back in August. He had a great time and I think the cousins were extremely excited to see him. He did have a few "episodes" at the party, but all and all it was awesome to get out and celebrate Luke's 6th birthday.

Jake had much sugar, excitement and fun, and is now sleeping peacefully awaiting a brand new day.

God Bless~ Christine

Thursday, September 18, 2008

soooo ..... we get the helmet that's supposed to insure us against future emergency room trips and upon a hour of waking this morning we wind up in the er! Are you kidding me?!

Jake's "bad time" is usually in the morning or upon waking from a nap. Why? Who knows other than it appears Jake's seizures are associated with sleep or lack there of. I have taken a leave from work because of Jake's seizures and because his bad time is in the morning, my mom has been going waaay out of her way to take Addison to school. God Bless Sally! Our morning routine usually consists of me waking Addi, and she can watch morning cartoons, as I do her hair and she gets dressed. During this time the video monitor is going with me everywhere, as I don't want Jake to wake and try to find us and have a seizure. (He usually will have several right before trying to climb out of bed, and then many more soon after) So when he gets up and Addison and my mom get on their way I grab a mug, or ten, of coffee, and my paper and "wait out or "BIG seizure time" in the play room in the comfort of carpetting and big fluffy couches. I then throw Jake in the stroller and we both try to take in the beautiful Texas Fall mornings.

Not this morning...we didn't make it 1 hour and he followed me into the kitchen and fell (not sure if the gracefullness he got from his mommy came out, or he had a seizure) onto the hard woods. Four hours later we emerged from the er tired, hungry and with 6 bright and shiny black stitches!

All the while the pretty little hockey helmet is sitting perfectly on the playroom floor!

God Bless~ Christine

Wednesday, September 17, 2008

Still waiting.....While at Childrens Hospital we custom ordered a helmet for Jake, as his seizures changed from tc's to drops. This drop, or atonic seizure, is why we ended up in the ER after being released from our 2nd hospital stay. He was using the restroom, "dropped" and cut his chin open.

The helmet was supposed to take 6-8 weeks...after seeing too many black eyes, knots on the head and bloody lips, Matt and I decided just to pay outright for the darn helmet to speed things along. This "speed" is waiting another 4 weeks! Today, I swung into a sports store around the corner and they have youth hockey helmets with chin guards! I was able to, luckily, cancel the darn "custom silver, to be like Romo," helmet, supposedly get my money back and finally get the kid a helmet he is in LOVE with!! Why did I not think of this 6 weeks and 8 stitches ago?! So now Jake has a helmet with a full face guard that he is in love with and mommy can have a little more peace of mind. The biceps are awfully sore from carrying around a 3 year old everywhere we go, in fear that he may fall! Although I will miss the instant workout from carrying him, I am mighty glad he can now walk places on his own.

God Bless~ Christine

Monday, September 15, 2008

After a pretty uneventful weekend, Thank God, we woke up to a pretty active morning. every time I get comfortable and let my guard down, i feel as if that security gets ripped away.

A week from last Thursday we had a tc and had to give Jake the emergency medicine. This medicine usually knocks most kids out the rest of the day, especially at the dosage Jake is given. Not our Jake...he slept about 45 minutes and then was back to his usual tornado self. One nurse in one of the many hospital stays mentioned that shows his personality...he is a fighter! The next 2 days were pretty rough, we were averaging 20-30 seizures a day. These mostly consisting of "drops." Although these aren't as scary to watch as the tonic clonics (tc's, grand mal), these are probably more dangerous, as he falls and hits his head on our hard woods, the fireplace, a table etc...try to keep a kid who is used to runing through the house confined to the padding of the playroom! The next week we did get much better and were averaging only about 10-15 a day. This past weekend I only counted 3-4 a day!!

I think his little body is slowly adjusting to all the medication in it. He does not tremor quite as much as he used to. His drool and slurred speech have also seemed to improve considerably. I think we are slowly getting our little boy back. It does scare the heck out of me what all these drugs are doing to his body and his brain. I am assured it is all safe, but sometimes I find that hard to believe. This once very coordinated little boy now has trouble with balance, speech and holding a pen.

Addison is the biggest trooper through all this. She is my eyes and ears when I actually step away from Jake. I am coming to realize life is going to go on and I need to let him live. therefore, I have let up on he constant following him around "waiting" for him to have a seizure. This is where Addi has been amazing. She reminds Jake of his limitations (no climbing on the stools, table, windows etc), informs me in much detail of seizure activity ,and never complains! That little girl is amazing. She has been shuttled around from relative to relative , denied things that were once a staple for her, missed her parents, as they left in ambulances or er trips, and continues to be so strong and loving! I need an ounce of what that girls has!

God Bless~ Christine