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


Friday, November 28, 2008

I had planned to blog the comedy of our life that was getting ready for Thanksgiving traveling and it just keeps getting better.

In the Thanksgiving preparations, that consisted of healing head wounds of Jake's, parties at the school, wrapping up my classroom, picking up the millions of socks left in the dining room from the dog, interrupting games of kitchen hockey using tomatoes and avocados, finding babysitters for Bogey, Jasmine and slugbug, and trying to bring at least something, as to not show up empty handed at the host's house, their has been much humor.

I swear with each waking moment of our life it just gets more interesting, and all one can do is laugh.

Upon leaving, already late, we already had a fish rescue. Taking bags out to the car I hear Addison scream bloody murder, once again from her room. "jasmine, jasmine!" Jake is with me, so I am put a little at ease, however I hear the all too familiar cry "She's sucked up!" We run to find jasmine stuck to the filter of the newly cleaned fish tank. I call fishy 911 and after a little net finesse, Jasmine is saved.

We get on the road and I realize we have to turn back because I forgot the store bought food "I baked" for the host.

On the way to drop Bogey at Babi and Papas the 10 lb crate of dog food spills in the car, while Bogey had an amazing meal, it was not on Matt's priority list to clean his truck of dog food on the way to a trip we are already late for.

Finally, we are on the road, for the 5 hour road trip, late. The kids are starving and tired but we wanted to hold off lunch until after we passed fort Worth at about 11:30. At about 11:00 Addison is really complaining she is hungry and she honestly doesn't look all too good. I have seen those deep purple eyes and pale white skin before. We reassure her we will be at "Old MacDonalds" in about 10 minutes. I turn around to settle in to the scenery on the highway only to hear a waterfall coming from the backseat. I spin to see Addi spewing what ever it is she may have eaten that morning, not once but three or four times. She then proceeds to repeat "No one ever feeds me around here." After a quick clothes change in a crowded parking lot, we are once again on the road.

She eats her "Old MacDonalds" and is fine.

We arrive in San Angelo to the home of Granny and Poppy, after 5 long hours of "are we there yet? How much longer?"

We are here and have a great Thanksgiving with the wonderful family we see too little of.

We wake to a search of lost wedding rings and "Someone stole it." Please, it was right where you left it!:-)

The guys hit the golf course.

We, the kids, Granny and I, head out late for a little shopping. We pick up "Old MacDonalds" for a backyard picnic, so to defer Jake away from playing in the McDonalds play park, that is surely accident ridden.

I strap Jake's helmet on after the peaceful lunch and shout "30 more minutes until naps!" Granny and I sit on the driveway and watch the kids plant flowers, or rather dig up Granny and Poppy's pretty garden, ride bikes and run.

Jake runs from "planting" to show us something....second base slides on the driveway....and lays....

I mumble something under my breath, run to pick him up, and tell Granny I can't look, she has to.

Oh it's only a bloody lip she exclaims! (Granny now runs in to get rags) Phew! Because I didn't want to see a bloody face. The way he fell, 3 feet in front of me, and how hard he was running, I just knew it would be worse.

I turn him off my shoulder to take a glimpse. Geez, bloody lip? I wish! The kid's face is covered in blood.

I remove the chin strap, from the helmet he WAS wearing, and there is the biggest gash I have seen!

It is kind of humorous to me, because we defer from "Old MacDonalds" as to avoid accidents in their play area, have a picnic on nice soft grass, strap the helmet on, and are never more than 10 feet away from the kid, and "bloody gashes" still happen.

Soooo a couple hours, 12 stitches, and a face full of road rash later, Jake and I once again emerge from the all too frequented er.

Jake's as pleased as the piped piper, as he scored a new Thomas track and a few new trains. However I am still wondering "what else?"

If knowing answers to life's questions is absolutely necessary to you, then forget the journey. You will never make it, for this is a journey of unknowables -- of unanswered questions, enigmas, incomprehensibles, and, most of all, things unfair.-- Jeanne Guyon

God Bless~ Christine

Thursday, November 27, 2008

I am so Thankful on this day of Thanksgiving.
So thankful to be so extremely blessed. We are blessed by amazing friends and family who have shown amazing, unwavering support as we have been traveling along this roller coaster. Blessed by amazing doctors who relentlessly continue to try and give us a seizure free day.

I know watching little Jake continue to have seizures is very frustrating and discouraging to many who knew the young man who never met an obstacle he couldn't conquer. What is evident and so visible to me, is that little man is still here. He has challenges now, but his challenges are harder for us to watch, than they are for him to defeat. This is why Our Lord made children so resilient. And our Jake has shown the most amazing resilience I have ever seen. For this we are blessed.

I feel there are two paths and I was given a choice of which one to follow. The one where I feel pity, sorrow, anguish and fear for the bump in the road that was given to us, OR I can accept it, learn from it, and grow from it.

I choose the second!

Jake has chosen the second.

This is a learning experience and were chosen by God to be strong enough to learn, grow and scream out about our experience. I am unsure as to why exactly we were chosen, but the fact of the matter is we were "chosen." Now it is my turn to do something with this unfortunate circumstance, because it will get better and it could be MUCH worse.

We often think of great faith as something that happens spontaneously so that we can be used for a miracle of healing.
However, the greatest Faith of all, and the most effective,is to live day by day trusting Him. It is trusting Him so much that we look at every problem as an opportunity to see his work on our life.
~Rick Joyner
Happy Thanksgiving!
God Bless~ Christine

Sunday, November 16, 2008

I feel I spoke too soon. On the eve of returning back to work, Jake just had a "tc." Although this is the only seizure he has had since Friday, and although this is only a little setback, it does not make it any easier returning to long days away from my baby boy.

"When life turns upside down, remember that we have a loving Creator who will give us strength if we will give Him the eyes of our soul with faith in His restoring power."

God Bless~ Christine
We had a seizure free day yesterday!! Our first since August 1st!!

Without faith, nothing is possible. With it, nothing is impossible.

~Mary Mcleod Bethune

Thursday, November 13, 2008

We have our first black eye!

As we are sitting at dinner last night Jake had a seizure which resulted in a cut and a black eye.

As awful as it might seem, all Matt and I could do was look at each other and laugh, while repeating, again..."Are you kidding me?!"

You see, and some of you may remember, the gash on his check that has now left a nice "v shaped" scar. He got that gash, sitting on the floor, while wearing his helmet. In an effort to prevent injuries, a while back we started having picnics on towels in the family room, as to avoid falls from the table. one afternoon, for snack, we gave Jake a small plastic bowl full of grapes and sat him on the "picnic table", donned with the helmet. he had a seizure, his face fell forward, the helmet broke the bowl, his check followed the path of the helmet, hit the exact point of the where the bowl had split, resulting in the "v shaped gash."

We thought we had taken every precaution to prevent injuries, but apparently not.

The black eye and eye gash is a similar experience.

We graduated Jake to a booster seat strapped to a chair, so we can again eat dinner as a family. I made sure to strap Jake in,move his chair away from the table, in the case he did have a seizure, his head would not hit the table. Jake did have a head drop seizure last night. usually he snaps right back with us, and in a matter of 2 seconds he is on his way. Last night he continued to cry. We could not figure out what he was crying for. Taking a closer look, I observed a bloody circle just under his eye. The circle was approximately the size of a straw opening.

yes, you got it! His face fell right onto his straw, in his cup, on his tray.

Resulting in.....a gash and a black eye.

We are VERY thankful this is the worst we have to report and continue to appreciate all the prayers of support and thoughts.

Meanwhile, the comedy, that is The Peters' house, continues.

God Bless~ Christine

Tuesday, November 11, 2008

Since the malicious murder of Spot Alvarez Peters, more fish have come and gone in the Peters household.

We were convinced to buy 3 tiny tetra fish by the pet store employee, who probably wasn't a day over 16. He assured me, Jasmine, Ariel and Prince Eric, are very hearty and would be hard to kill. I believe Prince Eric lasted 4 hours, Ariel and Jasmine, however made it through to the next morning. It was late morning when we checked on the last remaining prince and princess, only to find them sucked into the aquariums filter. It was not a pretty sight.

This time I made Matt and Addison make the trek to the pet store to pick out yet another fish. They came back with another beta, Jasmine II, and a hermit crab, SlugBug, who we have yet to see, as he has hidden in his pyramid, or under the dirt the duration of his stay at the Peter's household. Word must have hit the pet store about the Peters murders and Slugbug was not going to show his face in fear of meeting his fate.

Jake went up in his meds Friday. This leaves only one more week of the long wean before we need to check blood levels and evaluate seizure activity.

I have been told since day one, that we wean so slowly onto his Lamictal because in combination with his Depokote a "deadly rash" can occur. So since day one we have been on the lookout for this deadly rash, that basically burns the skin off of the patient.

Well Saturday afternoon, a day after the "upping" of the meds....I notice a rash. I am thinking "are you kidding me?" The "deadly rash" starts on the tummy,check, is mottled or lacey, check, and can look like a burn or have a burning sensation, check...I didn't notice the rash until jake complained that his belly burned.

I immediately call the nuero on call who informs me to stop his Lamictal...again I am thinking "Are you kidding?" We have come so far and I know that you also have to "wean off" of the drug. I fear a reaction from not weaning off and even more so, fear a seizureful night!

I decide to take him to an after hours clinic. They get in touch with the nuero and they both decide this is not the "deadly rash" and my son will indeed make it through the night, as opposed to having all his skin burn off.

Phew, because we were not looking forward to picking up the layers of skin that may be left from this "deadly rash."

We are unsure what caused the rash. It was obviously an allergic reaction to something,as his eczema was extremely inflamed as well.

All is well now. We are just anxiously awaiting the day when we can count less than 5 seizures a day. We are over 6 weeks stitches free though! (knock on wood)

It is Epilepsy awareness month. Research the 36 different types and the related syndromes. It truly is not what you think. Wear Purple!

God Bless~ Christine

Wednesday, November 5, 2008

It's a sad day in the Peters' household.

Over the last couple days we gained two new additions to the family.

The first a green, turtle sandbox to help keep Jake busy during, what appear to be getting longer days. There are only so many activities we can find to do all day long. However, the sandbox has beena wonderful addition to our daily schedule. I have to high five you stay at home moms!:-)

The second, a bright blue, with red feathery fins, beta fish. Addison picked her "Spot Alvarez Peters" out, carried him home, fed him, and even made sure he had a nightlight. She ran to see him every day after school and checked on him several times throughout the evening. She had earned her first pet and couldn't be prouder.

It was about 4:30pm when I heard a terrible, gut wrenching scream. As I run to see the cause of the commotion. Addison comes runing from her room, unable to talk or even mutter a sound over her heavy bawling. She is slowly followed by her brother, holding a blue fish net, and bearing an evil grin.

Her , oh so loving brother, found the fish net, scooped Spot out of the pristine fish tank, neatly set on Addison's window sil, and threw him down the drain, all while the little princess watched her beloved pet meet his fate down the long and winding drian pipe.

After much anguish in trying to rescue the poor beta, we surrendered our efforts. Spot could now be swimming under the endless streets of Plano, Texas, as Nemo once did, searching for his long lost family.

It is with a sad heart that I tell you, Spot Alvarez Peters lost his battle to the little brother Jake Peters at approximately 4:45 central time.

Rest in peace Spot.

God Bless~ Christine

Monday, November 3, 2008

I sit here tonight in much strife, uncertainty and confusion.

I really can't believe I log on ever so often to blog about my boy. I read blogs that people attach to emails to me. I don't blog about my own life.

I can't believe, looking back at the past 3 months where our life has taken us. I reread the blog that I have written and can't believe it. What the heck happened? What did I do wrong? Why can we not live a normal life right now?

I remember about 6 weeks into this I looked at Matt and said "I am soo glad I didn't drink or even take a sip of alcohol when I was pregnant, because I would be feeling so guilty right now." I know I said that. and, no I didn't take even the littlest sip of anything,but I still feel like I did this to my son.

Was it all the milk I drank? He did end up not being able to take breast milk or formula, he had to drink lactose free, as a baby. He has eczema...did I give that to him? I started with bad outbreaks, just like Jake, in 2000. Was it the darn vaccines that I questioned a trillions times to my doctors?

I seriously don't know how we got here and , again, looking back, I can't believe we are where we are.

We had just gotten to the "good part." Both kids potty trained, sleeping through the night, they play together, get up and watch Saturday morning cartoons together, eat dinner together...yada, yada , yada...you parents out there know what I am talking about. It was seriously getting easy again! W e could honestly appreciate the twerps without stressing about what they needed next!

Then BOOM August 1st happens.

Looking at the last 3 months I can't believe we seriously restrict the kids to the playroom or family room, we walk him to the restroom and hold him to pee, we have to explain ourselves because he can't hold his drink at a restaurant, or his head hit the table and he starts to cry, that I am not working, and Jake is not at school. When we were at Children's Hospital I remember saying to matt nonchalantly, and not even thinking I needed it, "Maybe I should hold off going to work for a couple weeks." Here I am almost at the end of the 2nd 6 weeks and still not at school!

I have a rowdy, rambunctious 3year old who knows nothing of this rather than "no pokes" from getting iv's, stitches, more iv's and more stitches. At one time, or rather several times I wished God would give it to me and take it from him. But if I had this damn disease, syndrome, whatever, I would not be able to care for my kids the way I should. Jake doesn't truly get what he has. he knows mommy gets angry at him for not staying on the carpet, or sitting down, or he has to sit in a highchair again. he gets pissed when he has a seizure, he knows when he needs his meds, but to him , this is his life.

This is MUCH harder on Matt, Addison and me than it is on him.

Frankly it just sucks. It sucks mostly because we still don't know anything! The doctors and nurses that I love still don't now anything. We can treat him with all these drugs, that are not supposed to change his disposition or personality, but do, but we still know nothing about this darn disease!

here we are November, epilepsy awareness month and has anyone heard anything about an Epilepsy event in your hometown?! I bet not. I am in Dallas and search and try to find something and I can't!

Not just because of Jake, or our family, but because of millions of others out there battling this demon, please go out and hug a friend with "E" and try to find out what we can do to try and "fix" this disaster that no one appears to know anything about.

God Bless~Christine

I apologize, for Babi:-), for "cussing" in this blog and in another blog...emotions get the best o fme sometimes.