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.