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

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

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

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

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

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

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.

Well we had another tc yesterday.

I took the kids on a walk to my sister in laws house, about a mile away, to show off their 2nd Halloween costumes. We all chatted outside for awhile, the kids ran, and apparently had ripped into the candy already. I joked with my niece "hey quit giving seizure boy all that sugar that's the last thing he needs." We make plans to walk back home, get our pumpkins and return for dinner and a pumpkin carving party. We walk to the end of the block and Addison shouts over the tunes playing on my IPod "Mom, look at Jake!" I say "yes, Addi, I know," as she always informs of any strange look that Jake may give in an effort to warn me of a seizure. Thankfully, I did take a closer look.

Jake was having a full seizure and was unresponsive. I quickly snatch him out of the double jogger and put him in the grass, I start taking off shoes, and clothes. I actually don't know why I am stripping the kid and why I moved him to the grass. At this moment a caring teenager on a bike was stopping and trying to help. He kept insisting to let him do something. What? I am unsure. I moved him along, as if to say "move along folks, nothing to see here." I am still very impressed with this young man. To see a stranger on the street and her son in full convulsions and offer to help was very admirable to me.

Apparently somewhere during all this I called my sister in law, and about the time the seizure was dissipating, The Alvarez van pulls up and kids and my sister in law start pouring out. She's handing me diastat, that luckily we don't need , as the seizure stopped somewhere in between the 2-3 minute mark. I don't know if I have ever been so thankful to get a ride home.

Tomorrow's Halloween and it could bring the scariest one yet.

I am so scared as to what the excitement of the day and evening may bring to a boy who suffers from seizures. The day will be filled with much over excitement causing:
exhaustion= trigger
too much sugar= trigger
flashing lights or strobe lights= trigger

and all at the same time!

I am praying that we will have a very UN eventful seizure day and the kids can enjoy it the way all kids should, sans stress, anxiety, and seizures.

We start the day bright and early with a Halloween party at their school. They will be wearing costumes number 2 to the school; Princess Jasmine and Peter Pan. Then will head out early for trick-or-treating, as a cheerleader and football player, in an attempt to avoid at least some of the over stimulation, and crowds on the streets of Plano.

Wish us luck as we try to conquer a very frightful Halloween, that is, trying to stay seizure free.

God Bless~ Christine

Addison and I got a "girls night out!"

We went to my best friends daughter's birthday party and had the best time! I didn't take Jake, as I didn't want to follow him around all night like a new walker. I wanted to sit with friends and family, sans anxiety, and enjoy my daughter.

About a hour into the party I hear Addison start to cry, or scream, rather and emerge from the huge Sponge Bob jump house with her mouth covered in blood. Isn't this why I didn't bring Jake?! She bonked heads with another partier and got a big ole' gash in her lip. As scary and tense as it was, she is fine and was herself in a matter of minutes. Just my luck, though, I leave the "walking accident to happen" at home and the other angel gets hurt. Blood and all, though, I wouldn't have traded that time with Addi in a million years...we really needed that get away.

I wake up Sunday to Jake having a fever,which means seizures, which apparently concludes to bloody and loose teeth. Just when I thought this was really,truly getting better, he has a seizure and knocks a tooth loose.

"A tooth" is what I thought, until we went to the dentist today...no not one but three teeth are on the verge on falling out! Good news is besides the "mobility" of the teeth, they are real healthy and if they fall out now, early, it should cause no problems.

I was getting used to this 1-2 seizure a day thing and now that we are back to 4-5, I can't believe how that brings back the anxiety. The sound of the seizure, literally stops my heart. It sounds like a big gasp or fake hiccup, and is followed by a limp child falling, hopefully on nothing hard. He had one today as the nurse was examining him at the dentist and I thought she was about to start crying, because he had the gasp, a tremor and then shot up and was very disoriented. I have to say, that was a strange one and kind of threw me for a loop.

I wonder what I was like 3 weeks ago when we were at 10-20 seizures a day?!

The kids are starting to enjoy the Halloween week though. Yesterday we hit the "trunk or treat " at their school and had a great time....maybe that's , sugar, heat and exhaustion, what's causing more seizures?











God Bless~ Christine

Last night Addison had soccer practice at 6:00 and then the school had their annual hot dog dinner starting at 6:30. At the dinner they kiddos eat hot dogs with their friends and families and then each class does a short little recital. Usually consisting of fun little songs and dances.

Since Addi missed soccer last week when we were out of town, I just made up my mind she would miss the hot dog dinner this year. However, she shed many tears over missing the event. I decided she would go to half of soccer and she could talk to her coach about leaving early.

This is what we did. We arrive at the dinner in enough time to scarf down a dog and a cupcake and settle in for the recital.

I don't know if subconsciously I knew how hard it was going to be, or if it even crossed my mind, but waiting for Addison to perform, was extremely hard.

The youngest classes perform first and then they work up to the older kids.

In years past we watch Jake perform and then wait for Addison to perform.

It was gut wrenching, sitting in the pew, watching Jake's precious classmates perform songs that he should be singing with them.

I guess I didn't realize it would have that big of an effect on me, but it was truly one of the hardest events for me to witness in a long time.

Jake has been "with" his class for the past 3 years. Some kids have come and gone, but the bulk of them have stuck together. I couldn't believe I was watching them do their thing without our Jaker-Doodle.

This is the class, that when I drop Addison off in the mornings and pick her up in the afternoons, run to smuggle him in hugs and kisses, show them what they are doing in class, and scream in delight when they see his face.

These kids, at three, know a part of their family is missing.

We are so blessed to have found this school. The teachers show amazing support for our kids, teach them wonderful things, how to walk in Jesus's footsteps and most of all love them with all their hearts. This is truly evident everyday in the looks of concern and compassion on their faces when I take my angels into this place. It is going to be one of the hardest things at the end of this year as Addison"graduates" to a public kindergarten.

I wish I could be a fly on the wall in their classrooms one day and see how these amazing role models are teaching our kids such amazing things, that are not only academics, but also, God's love, compassion, empathy and support of one another.

We are blessed to have found them and pray for the day Jake can rejoin his other family.

God Bless~ Christine

We are back to the Lone Star State and reality!

We had an awesome time. I think Jake's seizures were way down. By the end of the trip I think we were only counting 3-4 a day, with a few exceptions. However, few seizures does not mean no bruises, bumps, and cuts. Jake did split his chin 2-3 times, fell down a couple flights of stairs and got 2 bloody lips. These were not seizures, though, just typical 3 year old clumsiness.

I did not realize what a mecca for seizures driving in the dark could be! Flashing billboards, car lights whizzing by, twirling police lights, and pulsing traffic reflectors. Geez, the anxiety level for me in driving in the dark was pretty high. All these "triggers" were stressing me out!

I guess I now look at all the little things in an entirely different prospective than I used to.

Anytime Jake would gasp, breath hard, or let out a sign, our heads turned around to the back seat like the girl from the "Exorcist." Thankfully though, none of these things really appeared to trigger his seizures.

However, I think I confirmed a strange trigger that I have not read about. WIND....I had my suspicions, for the longest time, when I would load Jake in the hot car and turn the air on him full blast he would seize.

One evening we went down to the beach after dinner, as the cold front was blowing in. And blowing in it was. Just being down there for a matter of 15-20 minutes, we think he had about 4-5 seizures. This is proved another day too, at the beach. It was windier than others, and he again had several seizures that day. Other than these two episodes, though, he really didn't have much seizure activity! YEAH!

The fishing!

Jake caught his fish!!

He, and Addison, actually caught many fish, jellyfish, crabs and little minnows. His "dreams" are slowing starting to come true.

Besides the fishing, one of Jake's other favorite activites, while at the beach, was chasing and feeding the seagulls.

Their next adventure...Surfing! After they caught a bunch of fish, it was time to move on. They both reported to us many times, next time they need to go surfing...so I guess we are on to the next adventure.

So here we are, back to reality, that is, finishing Halloween costumes, soccer practices, dentist appointments, teacher conferences, field trips, field days, Halloween parties, soccer games and still finding time to breath, after a week we will never forgot and one that ended all too quickly. We are so blessed to have had this opportunity to get away to such a beautiful place!

As I finish, and reflect back as to where we were with all this 8 weeks ago, or even 3 weeks ago, I bring myself to back to what had gotten us this far.... Faith, anything is possible when you have faith!

God Bless~ Christine

So here we are in beautiful Florida! Literally, the place my husband and I crave the most all year long.

However, I sit here in tears.

Yesterday we went to the neurologists. He said Jake looked awesome! He did confirm Jake had a "bad case" of epilepsy compared to others. He also did say Jake is doing great. Well, I could have told him that, after where we have been! Jake had a couple or several seizures in the room with the doctor. Matt and i did nothing. Babi was with us and did nothing. The reason? Because this is VERY calm as opposed to what we are used to watching and have watched. The doctor kept looking at us as if we are nuts. I ,at the time, thought he was giving me these looks b/c I rattled off millions of questions. Upon departing, though, he says numerous times..."I can't believe how well he is doing, especially after all these seizures this morning!"

I am thinking what? I thought "this was all normal?" I walk out feeling proud that my son can "handle his seizures." But you know what....what the hell is that?!! We can handle them because we were told "oh it's normal for seizures." Who the hell knows what's normal or not normal?! Its not normal that my son is having seizures after three years of life!! It's not normal that our lives have changed soo drastically that we can't even recognize it! It's not normal, that my son, who is 3, reminds me to give him medicine!! This is not normal...nothing is normal anymore.

So, we get up at, Matt at 3:30, me at 4:00, to be on the road at 4:30. We are on the road at 4:30 for the 12 hour trip. The kids look at me with glee as I whisk them out of their bed and into their car seats, still in their pj's. Addison's firsts words, in all her slumber, were "This is going to be the most exciting day ever!" How can we not be excited for this trip?! Especially after these words.

The kids didn't sleep for the first hour and Jake didn't seize. The doctor told us to give Jake "an extra dose" of one med right before we left and then continue our regular med path all day.

The twerps finallly went to bed a hour into the trip and slept for 2 hours or so...Upon waking Jake had several seizures, again we thought this was normal. We continue down the, what seems to be endless highway, have more naps, more greasy meals and FINALLY arrive at the coveted BEACH HOUSE!!

The kids, Matt and I are unloading, unpacking, and only thinking of getting to that beach for sippees of juice, glasses of wine, cans of beer,and THE SUNSET.

NOPE, didn't work out that way. While un packing and "relieving" ourselves, Jake has a "tc". I heard his helmet hit the floor, but was in another room, about 2 feet away, and on the phone. When I went to check on "what Jake had broken" there he was in full seizure wearing his helmet and all. I clocked 2 minutes, but it could have been more...not much more but maybe 30 secs. to a minute. I did not give er meds, as I am nervous about what all this Valium is doing to him. So here starts our much anticipated vacation week, I hope this isn't a sign.

BUT, we are here and SUPER happy. Jake did actually act like he had a seizure for about 10 minutes. He is now fine after much pizza, swings in the hammock, explorations of his new house for the week, and is now fast asleep, anticipating a new day.

The tears? First because, why a TC now?! is he regressing? How close and sheltered do I neeed to keep him? Secondly, I have read Jenny Mccarthy's book "Women Warriors," and it is the MOST fabulous book ever, in regards to, not only Autism, but kids kids with special needs. I have been telling , or maybe even preaching ,to everyone about this book, it's doctors and its practices. I then went and bought the first book, "Louder than Words."

Here come the tears. The first 50 pages, or so, are LITERALLY our lives starting August 1st. She literally spoke every word I yelled at the paramedics in my head, or cursed to the doctors, or swore to the nurses. Word for word, Jenny Mccarthy is speaking our lives. The testing. The returns to the er. The puzzled looks on doctors faces. The difference? Jake does recover and doesn't have Autism. The difference? We, Matt and I, sit here and think all this is normal....Jenny does not and is taking a stand!

I will take a stand with her. Our precious kids are worth it!

I beg everyone to read her books....even if you don't have a child that has "issues" it truly is an eye opener and makes MORE than enough sense!

God Bless~ Christine

PS Tuthill's- nothing was broken!:-)

Every time I get "comfortable" with all "this" we regress. This regression is just a little, but all too weird for me. Jake has been having more seizures, and some of these bigger ones. Not necessarily "tc's" but bigger drops. He was getting to the point, that I think he could sense a seizure coming on, so instead of dropping, head crashing, chin knocking, he was kind of "melting." I could see in his eyes he knew what was going on. Looking at a three old with this "look" is just weird. Especially when this 3 year old was, 3 months ago, soo normal, or as the grandmas like to say gifted. The Grandmas still think all this is going on because he is too smart and his brain doesn't know what to do with everything coming in. This weekend we have been back to "hard head knocks" followed by twitches, that scare me that I "tc" is soon following.

We will swing by the neurologists office tomorrow. :-) I don't think they know what's about to hit them. I am loaded with brownies for the nurses, b/c of all my daily calls. I surely hope they allocated a bunch of time for us, as the questions may never stop.

Starting from the first hospital stay, we have always given Jake, what we thought was, open ended promises, we have sworn to Jake with "when you get better," "after this poke," when you get your stitches out," "after they take this blood for the ump-tenth time," we will go fishing. The "We will take you fishing" ALWAYS subdued him. Jake would then go into describing countless Sunday mornings, sitting with Daddy watching some boring fishing show, that the both of them thought was better than sliced bread.

This is the kid, who staying at the hospital, and more people than I can imagine, gave him books, coloring books, games, etc......only wanted to read "Texas Fish and Game" or Texas Wildlife" or the Cabellas catalog.

Well...our open ended promises are coming true!!! We usually go to the "beach" every year with my best friend, and maybe some other best friends and their families. Each year it changes, as to what "best friends" may be able to make the trip due to illness, newborns, or pregnancies. This year I am unsure why we didn't go, but it was all for the best. We usually go late July...if we would have gone this year with Jake, who knows what would have happened. The Lord works in mysterious ways.

Back to the point...My best friend and her family are graciously offering , of maybe after much begging, their beach house to us for a week. One of Jake's dreams is coming true!! He can run on the beach, roll on the sand, go fishing at 4:00 am with his daddy,not wear the darn helmet every time he wants to play, and most importantly spend time with the family he has missed so dearly during hospital stays, Daddy's stints at work, or Addison going to school.

We leave for Santa Rosa beach bright and early Wednesday morning! The family and I are elated and can not give enough thanks to the family that made this happen for us. This is probably one of Matt's and My's most favorites places on earth and we can't belive we are actually given the opportunity to go.

We are so blessed by this vacation and truly feel that Jake will get better because of it!

God Bless~ Christine

It's been crazy around our house lately. Matt's back out of town, we have guests coming in town, we are gearing up for a vacation, the big nuero appt., and trying to figure out how and when I will get back to work.

We are able to mix in some fun between all the chaos that is: running Addison to and from school, keeping the house in some what decent order, being on constant seizure, wood floor walking, chair climbing, potty going patrol and managing to get the kids fed and to soccer practices.

We went bright and early to the Pumpkin patch yesterday! I made sure to get there when it wasn't too hot ,as heat, hunger and sleep appear to trigger Jake's seizures. The kids, Babi (pronounced Bubby )and I had a great time! The highlight for Jake was definitely the tractor pulled hayride.I think Addison loved everything evenly. She did not stop running or screaming in delight the whole time.

Last night, as I am finally getting used to this "Jake sleeping in his own bed thing," and figuring out it is possible to catch a least a couple winks of sleep, instead of worrying about him all night, I heard a blood curling scream at about 3:00am. You can imagine my terror. Initially I thought is was Addison having a night terror, as she often does. I then could tell that's not Addi. I try to unwrap myself from all the baby monitors that are sharing a pillow with me, run down the hall, just in time time to meet Addison running my way. She is saying "It's Jake, It's Jake!" I am terrified now, as I had leaped out of my bed and checked the video monitor I did not see him in his bed. "No blood, No blood, No blood." is all I can manage myself to think or say.....I finally, after what seems like 10 minutes for a distance of 30 feet ,make it to the kids jack and Jill bathroom....there is Jake laying on the floor. At this point I don't think I am breathing, and am already ordering Addi to get her flip flops on because we have to go get more stitches.

Luckily, though, after a very thorough head, lip, and chin check, there is no blood!

The cushioned toilet seats, circa 1965, that we bought after out first set of 8 stitches did the job!!! Jake walked away with a rather large red and tender spot on his check from the fall, but NO GASHES and, Thank God, no stitches!!!

Love the padded toilet seat!

Now to only figure out a way to keep him out of the restroom at night, but also give Addison access in.

God Bless~ Christine

We had a great time at the Cattle Baron's Ball!!! It was great to get out of the house, but a little surreal as well. We really didn't know what to do with ourselves. Matt's been away from the kids, but only in a work setting, however this was my first "outing" away from the kids since late July at all.

Addison has now, after going to her cousins football game, changed her Halloween outfit to a cheerleader. Jake has also decided he wants to be a football player like his cousin...he wants to also be wearing the same number as his cousin. I am totally fine with this, as long as the costumes are coordinating. I know there will be a year in the near future when they no longer let me dress them in coordinating costumes, but it looks like I squeaked by this year. They have been a cowgirl and horse, Tinkerbell and a pirate, Dorothy and the lion and this year we were planning on Pocahontas and an Indian. I will admit, I am a little ridiculous, as I try to plan "next years" costume while we are trick-or-treating the current year.

I have been told that I must update"correctly" on Jake and his progress. Seizures have really not been the topic on this blog, as I think the activity is way down and I kind of don't notice it anymore. However, whenever people see Jake and then have an opportunity to talk to me after their visit, they inform me that maybe I have gotten too used to it. I guess that point was made even more noticeable today. I took the kids to their peds office and we all got flu shots. Their ped saw us and stopped what she was doing to ask how Jaker-Doodle was progressing. I informed her, "All is great! We have like 10-15 seizures a day!" She looked at me like I was crazy!!

Jake is having seizures anywhere from 5-20 times a day. However, they are getting much shorter and appear to be more clustered at the same time of day, as opposed to 5-20 all day long. The drunkeness also appears to be dissipating a bunch too. He still has his moments when he can barely hold his head up, but it is no longer 3-4 hours long.

I don't know if I have gone into total "mommy mode" during all this or if I am getting my strength from another friend I have met since this all started. Although we have never actually met, I have met a Friend who has a little boy about Jake's same age. He and his family been battling this a lot longer than us and he has much more intense symptoms. While I was having a my own pity party a couple weeks ago, I heard from her and her son was paralyzed from this monster we call epilepsy. While consulting doctors, they assured her "this is fine, it's normal, it will only last a couple days." He did get better, but then he was paralyzed on his one side right after this. How is this normal? And as a parent how can we not ask why? and why aren't you helping? This is not normal. Our sons were just walking,talking,playing, running through fields,planning their next big expedition. Now they can't see past their next specialized diet of next set of meds.

I think what I believe, which never hit me before, as I teach several kiddos with epilepsy, is no one truly knows and it is a very complicated disease. I believe we don't have "answers", because no one really knows. Even the best of neurologists don't really know. I believe they know what kind of meds can work on each type of seizure, but even that is unpredictable. Many of these kids with epilepsy, on meds, never get "used to the new drugs" in their system as Jake seems to be doing.

We have a loong way to go. We are on only 20 mgs of his Lamictal, and we need to be up to 50mgs. That is by increasing 5mg, every week(Friday's for us). We have our next , much anticipated,nuero appt. next Tuesday. I am anxiously awaiting it, as I have millions,if not trillions of questions noted on my little journal. Of these, most include different diets, or herbal treatment.

I hope and pray that through reading this blog people become more aware of epilepsy. I think most people are like me and think "no big deal." However there is still soooo little known about it that is truly scary.

God Bless~ Christine

We have had a pretty busy last few days. Matt went back to Houston on Wednesday, I have started to take Addison to school, we visited a fire station with Addison's pre-school class, then joined them for a picnic at the park, and went to my nephews football game.

The kids and I were sad to see Matt go back so soon. However, it is just for a short trip, as he will be back tomorrow. Our weekend is pretty non-stop as well. Addison has 2 soccer games, a birthday party and we get to go to the American Cancer Society Cattle Baron's Ball! Matt and I are sooo very excited to get dressed and spend some time together, as we have not had an alone moment literally since the end of July. Although I am stoked about the event and seeing our favorite singer, Pat Green, it is going to be pretty emotional and stressful leaving Jake for the first time too. Babi, was the lucky one, who got suckered into watching Jake and Addison. Not that Babi doesn't love looking after the kids, but since Jake started having seizures, everyone kind of "runs the other way" when baby sitting is brought up. :-) I am certain that everything will go great...I will just have to leave Babi with a hefty glass of wine to calm her nerves.:-)

The fire station was great. Addi's teachers and classmates are outstanding, and it was wonderful for Jake and I to get out of the house and interact. Addison and her classmates were hilarious, as they could of cared less where they were going, they were just elated to be traveling on a field trip in a "bus!" This "bus" was actually a 15 passenger van. By the time I picked Addi up from school this "bus", somehow morphed into a white limo. So Addison now brags she went on a field trip in a big, white limo!

At the fire station, Addison was very proud to shout out her "brother rode 3 times in an ambulance and she had firemen and policemen in her house once." Jake was not impressed with anything until they whipped out the big tools. These included the jaws of life, axes, and chain saws. The kid is certainly all boy.

Last night we were so happy to see Addison and Jake's' cousins and Aunt at a football game. it has been way too long since we have seem them. Unfortunately I was unable to talk and hug the star receiver, however I was able to pull the "old embarrassing aunt" card, as I yelled his name out the car window as he ran off the field...what 7th grade boy doesn't love hearing his aunt yell "I love you Alvarez" in front of all his peers?!

Not only was is it awesome seeing my sister in law and nephews, but the out pouring of love was astonishing! I am used to the stop and stares, with no words spoken at the grocery store, or mall. This experience was so much more touching. Instead of the kids asking their moms why that little boy is wearing a helmet, or why did his head just hit the steering wheel in the shopping cart, or the moms grabbing their kids and saying "look away" "don't stare," everyone came to Jake and I. I was reassured that so many people were praying and they were on our side. Jake didn't have a dull moment the entire game. He played with the older boys, joined in dancing and cheering with the cheerleaders and managed to find several dirt holes to smother him self in. All this playing and the heat did take a toll on the kiddo though. Throughout the game he did have several seizures. But even when he had the biggest of them and you could hear the crack of the helmet a mile away, my sister in laws' friends came to him instead of running from him, as if they could "catch it." I sit here misty eyed recalling how kind everyone was and how "normal" they made Jake feel.

We went up in meds this morning, so I am unsure if it is because of this or his over tiredness from all his activities this week, that his seizure activity has been up this morning. For about the first awake hour he was having some sort of seizure about every 5-10 minutes. We took Addison, went to the grocery store, went for a walk and jog in the park, and he is now fast asleep.

I too am going to try and catch a few z's while I have the chance. I went ahead and moved his bed back in his room a couple nights ago. Although it is great getting him back to "normalcy," I am lacking big time in the quality sleep department. The first night I tried to sleep in my own bed, but ended up getting a blanket and sleeping on his floor. Last night I got the video monitor and noise monitor and set out to conquer my own bed. As comfortable as it was, I think I logged one solid hour of sleep.

Tonight we plan on renting movies, loading up on magazines and spending a peaceful, restful night at home, until we start it all over again tomorrow.

God Bless~ Christine

OH I did go ahead and pull out the old booster seat for Jake. I was tired of the kids eating in front of the tv, on the floor for every meal. Jake loves it, for now, as it is "new" again.

This reminds me...many have been asking how he got that cut on his cheek. Tuesday he was eating a bowl of grapes, on the floor, wearing his helmet. He had a seizure, his head went forward and broke the plastic bowl, resulting in a lot of blood and a "v" shaped cut on his face.

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