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.
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
Wednesday, January 28, 2009
At about 3:30 Addison too joined us.
At this time I rolled over to check the district website to see if they had yet updated the site as to whether or not we wold need to strap on our ice skates to get to school.
There was still no update.
I turn the phone off, settle back in to the warm bed, get nestled among my family and...
I hear it.
Matt and I both huddle over him at the same time and here begins another tc. I actually have my wits about me to tell
Matt to turn him onhis side. I then observe. This one does not look like it had the intensity of the many that started us on this journey. However, it seemed to go pretty long.
Since Addison was in our bed, she obviously witnessed the entire thing. When she heard the gasp, the first thing out of her mouth was "Jake cry, Come on just cry." She knows when he starts to cry it is over.
She then continued to talk to him and try to coax him back to consciousness, while rubbing his leg.
I sincerely get sick to my stomach as I think about darn seizures. But, if Jake is going to fight these demons, this is exactly how I want him to do it....as a Family, all together.
God Bless~ Christine
Tuesday, January 27, 2009
I hop into bed at about 9:30 last night. By 10:30 I am startled by a blonde haired, blue eyed boy, staring me in the face. If and when Jake crawls into bed with us, it is usually in the early morning hours, so for it to be so early, I thought this was strange. As I was freezing and didn't want to walk the path on the cold floor back to his room, I lifted him up so he could snuggle right in between Matt and me.
At 11:08 it happened.
I am unsure why I bolted out of bed and turned to find Jake, but thankfully I did. Only to find him having a tc.
I forgot how miserable these are to watch.
When it finally clicked what was happening I wake Matt and have him get the "butt medicine."
I think I was in shock. I remember doing nothing except crying and staring at my baby boy, as his eyes deviated up and the the left, his body was convulsing and limp, and he was unresponsive.
I should have turned him on his side. I should have done something. However I was numb.
To think just a couple hours before I was bragging to anyone who would listen how great he was doing. Now I am like a deer in headlights, acting like this was his first time to have a seizure.
This was not his first seizure and I can only dream it will be the last. All we can do is keep the hope and faith that things will continue to improve.
Monday, January 26, 2009
RIP Slugbug...You will be missed.
We have had a fun and eventful week and I will save the best for last. Addison went with Papa to see Annie the ballet. She loves going to see musicals, plays and ballets. She probably even more enjoys the time with Papa, as the world is hers when they are together. She can do no wrong in his eyes and can get whatever her heart desires..well most of the time. It is Matt and I who have to "pay" for several hours or even days after an outing with Papa, or any Grandparent rather. She can conquer the world when she is with them!
Jake went shopping for a New big boy bed, yet again. It seems the infinite search for the perfect bed, at the perfect price that will last us as long as this child is living in our house, is near impossible. However, we finally decided on one at The Cat and The Fiddle that is pretty cool. It is not the price we would have liked to pay, but I guess beauty comes with a price...right? Waiting the 6-8 weeks for delivery could be excruiating. The child no longer sleeps in his bed. He begs for us to make him a bed on his floor, or ventures to our room in the early morning hours. This could be the longest 6-8 weeks we have known.
Jake has had.....drum roll....... no more than...drum roll......3 seizures since Friday!! Of course these are ones that we have seen. He could have had more, but we saw no more than three! Friday we only logged a couple, however he had weird behavior, that I am really unsure about. Therefore, I will not count Friday. Today he had his first seizure free day at school!!!
I praise God for the small things. I find myself feeling giddy inside and bearing a "perma-grin!" I look back and can't believe, truly, how many seizures he was having a day...as little as a week ago ...we were having more than 15!! To have 3, or less, all weekend I am beside myself!
“Nothing has turned out as we expected! It never does. Life's under no obligation to give us what we expect. We take what we get and are thankful it's no worse than it is.”
Friday, January 23, 2009
I make fun of these new approaches, however in my joking, I truly believe they are/will and do make a difference in Jake's life.
We have ventured out to seek the therapy of a homeopathic chiropractor. Jake has been adjusted a couple times and we are also giving him supplements in an effort to detox his little body of some toxins that may be taken up residence uninvited.
The first visit to this doctor was quite an experience. She practices, what is called Nutritional response testing. It is an ancient form of Chinese acupuncture. Coming from a world of hospitals, vaccines, ambulances, and over the counter medicines, it was quite different from what I was used to.
We are willing to try anything, though. What can it hurt?
We went this past Tuesday.
Monday Jake had at least 15 seizures. 11 of these in just the 3 hours he was at school.
Tuesday his seizure count was just about the same.
Wednesday, after out first visit and supplements were given......5,or less.
Thursday.....5 or less!!
The child has more energy (a little too much for my liking...you think I would be skinnier chasing this tornado around everywhere) since Tuesday. His speech has seemed to improve and his attitude seems to be much better as well. Not to mention, look at the decrease in seizures!
We are unsure what is exactly causing this turn for the better in Jake, and we can't over analyze it. We will continue to do whatever may help Jake and right now, at least, we are succeeding!
God Bless~ Christine
Sunday, January 18, 2009
We were beginning to lose our little man again,much like the many blogs that started this site. He was having a difficult time forming sentences, having motor control, and with loss of strength. Our little guy was leaving us, so we pulled the plug.
Was it the diet? Who knows, but we needed to decrease our variables in Jake's life, to fine tune our knowledge of what may trigger seizures ans cause adverse effects.
We are still weaning on to a new drug and off of a drug, he may have had a fever that week, I went back to work, after staying with him for 2 weeks straight, and we started the diet. We were really unsure what was causing Jake to disappear again, so we chose to remove at least one variable, the diet, and see what happened.
The first day after starting Jake on a normal diet again, he joined us! He was back! We were still having many seizures a day, but his personality and spirit were once again with us.
We will indeed retry the diet if need be, however we want to wait until we are completely weaned on to this new medicine.
Blood was embedded in the diamonds in my ring, in the groves of my fingers, the cuticles of my nails, and was still oozing out of Jake's mouth. This was after the frantic "clean up."
"Every thing's fine!":-)
We probably could have hit the er after this incident, as his frenum was completely torn, there was a huge gap, and another added slice, from the New Years Day massacre. However, I am not sedating my baby for cuts that will heal on their own, but just take longer to do so.
"Laughter and tears are both responses to frustration and exhaustion . . . . I myself prefer to laugh, since there is less cleaning up to do afterward." [Kurt Vonnegut, Jr.]
God Bless~ Christine
Friday, January 16, 2009
I have a few minutes tonight however, as the kids finish their S"Mores and I wait for Matt to return with dinner.
As little as a hurdle as this may seem to many, it is huge to me. Although it makes me kind of sad thinking that the child is so used to take medicine he conquered this obstacle without even a flinch, he did it!!
Medicine giving time is usually painful. Most of the time Jake is pretty good about taking his meds, which consist of a couple syringes (sans needles), and sprinkles (loaded spoon topped with 2 capsules of "sprinkles"). However other times it can be a beating to say the least!! Chasing the kid under tables, behind couches and hearing wails of defiance can get old real quick!!
Well tonight and the past couple nights PROBLEM SOLVED!!!!
Jake now swallows his pills!!! Yeah Jake!
He is so proud of himself and up for the challenge that it takes 30 seconds to administer meds, instead of the "unknown" time span!
He's three!! I know more than one adult that still can't swallow pills!
"Take the first step in faith. You don't have to see the whole staircase, just take the first step." [MARIN LUTHER KING, JR]
seizure count recently 10-15
Sunday, January 11, 2009
I am not sure I have the energy, the spirit, the confidence, or maybe not enough wine tonight.
I still can't fully wrap my head around the turn our life has taken. I am fine with this detour, however I really thought would would be redirected onto the main road by now.
Addison says it best, and it certainly pains my heart for her to carry such a burden. However at every chance she gets, ie. shooting star, first star in the night, letting a balloon fly upwards for a never ending journey, and upon every daffodil, she wishes, simply:
"please let Jake's seizures go away."
She does not wish for herself. For a new barbie, or brand new puppy, but only for the health of her brother.
Addison too, has become afraid of "the phone call." As she stayed at my parents this past night, I called several times to check on her and her return and she was heard in the background almost every time, asking "if Jake was ok?"
This 5 year old dear child of mine, has more spirit, more bravery, and more compassion than I could ever have imagined. I, again, would love to have an ounce of what she has!
She states, ever so simply what we all dream of for Jake.....seizures go away....
~ Children are remarkable for their intelligence and ardor, for their curiosity, their intolerance of shams, the clarity and ruthlessness of their vision. ~
God Bless~ Christine
Thursday, January 8, 2009
"Mommy, do you know Natzi's are really bad people?"
Yes, I am aware of that....but geez, what in the world could have caused a 5year old to contemplate The Natzi's?
It makes me really realize how much kids soak up in our daily lives. The little things we may mention in passing, laugh at on tv, or even sing in a song. These words that "oh so knowledgable" adults, speak to children, are sucked up and forever embedded in their heads.
Our children our sponges. Now is our time to mold and make these sponges into the amazing people they are destined to be!
~ Children are like wet cement. Whatever falls on them makes an impression. ~
God Bless~ Christine
If anything can come of the unexpected death of Jett, and unfortunately, it probably could have come earlier, maybe the world can come to see what we deal with every day.
I truly feel like Jake was given this to make more people aware and I ask myself every minute it seems, what can we do to help the cause?
Maybe this is what we, as an epilepsy community, need.
A big celebrity, who is/was battling seizures, to bring awareness to the cause.
We all know the stats. Money is/has not been provided for research and awareness. However seizure disorders and epilepsy affect 2,700,000 people in the
U. S. and 50,000,000 worldwide.
I am a special education teacher and educate kids who suffer from seizures, but never "really" knew, until it happened to me.
Maybe this is/was his ( J. Travolta's) calling?!
I hate this happened to his family and I am surely not going to criticize their choices in treatment. They lost a loved one, and could very well be beating themselves up for what they could or should've done.
But, this is bringing an awful lot awareness to autism, epilepsy, seizure disorders and other disabilities... .maybe that is /was their (the Travolta family's) cause.
"Sorrow looks back... Worry looks around... But, faith looks up."
God Bless~ Christine
Wednesday, January 7, 2009
The kid has not eaten in over 36 hours, except for sips on "flavored water" and "cream," which is his new milk. The first day of the cream, he thought it was the greatest drink ever. However, today the cream did not get the same welcoming.
I had cups, sippy's, and different cups thrown at me all afternoon. He did not want the cream! He did not want water, he did not want "cheetos" (american cheese nuked to make crisp crackers). The kid wanted nothing, except to beat me, the dog, or his sister up.
My mom did not even take him to school today, as he wasn't acting himself. She reported he was very tired, weak, couldn't urinate, and wouldn't eat. I communicated with her on the phone several times during the school day to try and tell her what to "try," but it was all for naught. Nothing worked until the PIZZA!
Yesterday Matt brought home endless supplies of pork rinds, a "free food", eggs, sausage, cream, and bacon.
We can do this! Yeah 24 hours in, I have my doubts. We can accomplish anything, but it is heart breaking, as he is crying for dessert. We most always have family dinner and then the kids get to choose a dessert. Unfortunately,our pantry is not yet stocked enough to make the $9.99, carb free, brownie mix I purchased at a speciality store. These brownies are surely made of gold! It was actually so surprising, that I didn't even flinch buying this gourmet bag-o-brownies. This is going to help my boy adjust to his new diet and get rid of damn seizures, it is a small price to pay.
Jake had 10 more seizures yesterday and about the same today. Very discouraging, as we were a couple/several day at 3 and under.
So back to the pizza. It was surprisingly easy to make, Jake liked it, and Matt liked it so much he was even trying to steal it! Up until I was swatting his hand, as this stuff is gold! I need to freeze all I can!
This diet will not be easy, by any stretch, but we will make it work for our Jakers, tantrums, thrown sippies, thrown food, and refusal to eat, will get better.
"Faith is to believe what you do not see; the reward of this faith is to see what you believe." [SAINT AUGUSTINE]
God Bless~ Christine
Monday, January 5, 2009
I somewhat, 1/2 heartily, started Jake on the modified Atkins diet this evening for dinner. Having absolutely no clue, if I am doing this correctly or not. I slap some bologna on his plate, a piece of cheddar cheese, a hard boiled egg and mucho mayo. I try to make it pretty and "fun" by cutting the bologna and cheese I rolled up into little "sushi rolls" and poked them with a toothpick, so he could pick them up.
Jake is allowed no more than 15 grams of carbs a day, but 10 would be ideal, on this diet. From my calculations, His dinner had less than 5.
As the dog steal one of the "sushi rolls" I throw him another piece of cheddar and again try to make "it fun" by having him bite eyes, A nose and a mouth. He won't even touch the eggs so I give him another piece of bologna and make more faces.
As he is eating this ultra boring meal, he talks to his food and says,
"seizures go away!"
I have been trying to lead into this diet by telling him he can't have bread anymore b/c we want the seizures to go away.
As much as I want him to be aware, as to why he has to eat differently than his sister, his mommy, his daddy, and other kids, it was a wake up call to hear those words spoken to his food.
Just after Jake says this his head drops with a seizure. Did I think this diet would work instantly? Of course not, but that's some strange irony, if you ask me. How does a diet stop seizures?
I would rather err on the side of faith than on the side of doubt. - Robert Schuller
God Bless~ Christine
yesterdays count = >2
today thus far= >2
Friday, January 2, 2009
Addison was still at my parents. Matt met some friends for Bowl games and lunch. Jake and I were left to a peaceful afternoon all to our selves. We venture out on a hour long walk. we watch some grade schoolers play a little football at the park,we run through the fields playing tag with trash cans, and stroll hand and hand contemplating the new year. Peaceful, to say the least.
We return to the pleasingly empty house and cuddle, talk, read, and "bark" at some dogs through our dining room window.
Oh the damn barking, window, and window sills.
I lug my laptop in the room to be with Jake as he howls, growls and yaps at the dogs passing by. I am an arms and legs distance away from the "dog yapper," he is wearing his helmet, and after about 5 minutes minutes of this I am starting to tell him to go play away from the window and stop barking.
About this time I see him collapse and hear a "BANG!" Down he goes.
I mumble something under my breath, or probably shouted it , as the house was empty.
Reach to pick him up,
But, it's not from the chin, small victory, as I could not stomach replacing the 21 brand new stitches, that are to be taken out Sunday.
The blood is coming from his mouth and maybe nose. I lift his lip to looking and see,
more blood, a large flap, and a black hole.
This doesn't look good.
I am aware usually one does not do much, if anything for mouth cuts, but this looks bad. I call the after hours clinic and ask several questions and it comes down to :
If it won't stop bleeding, or there is a flap, he needs to go to the emergency room, as they can't repair it there.
So off we go again. I grab the iPod and the Fisher Price go with me dvd player, call my mom, because I don't want to alarm Matt and ruin his time catching up with friends, and head out.
I groan, as we drive up, because the er parking lot is packed, and the waiting room is equally crowded.
Surprisingly though, the admittance clerk is extremely nice, when usually we have someone grumble "fill out the papers," and point to where they are.
The wait is surprisingly short, and in triage Jake scores a frog!
Is all this symbolism for better things to come?!
I walk, with a smile, to room "24" (good number)
We wait maybe 10 minute for the doctor and he gives us the news.
Jake tore his gums not his lip. I guess on the way down he snagged his upper lip on the window sill and continued to the floor.
His frenum was ripped and there is indeed a hole.
If I wanted to sedate him, we could stitch it up.
No Thanks! I opt to let it heal naturally.
We leave the all too frequented er in Plano, in less than a hour, less 100$, no stitches and a happy green frog!
“I do believe that when we face challenges in life that are far beyond our own power, it's an opportunity to build on our faith, inner strength, and courage. I've learned that how we face challenges plays a big role in the outcome of them.”
God Bless~ Christine
Appaently I have not been keeping a seizure count.
New Years eve >3
New Years day >3
Thursday, January 1, 2009
1. The iPod. This little piece of greatness has certainly made emergency room visits and waits a little more bearable. Thank goodness for Scooby Doo on itunes.
2. Fisher Price go anywhere dvd player. This is a rather new luxury, however I foresee it
iPod and accompanying us on many trips, good and bad.
3.Diatsat. Although it stinks to use the "butt medicine," it is certainly my copilot. It goes everywhere with me and surely is a comfort to me.
4. The new blue helmet. This recent addition to the Peter's family, is such a welcome of comfort. I makes sitting on the couch as Jake plays in the other room a tad more relaxing, as I don't have to run in the playroom every 5 seconds when I hear a noise.
5. My Palm Centro! Such a luxury to have a phone that emails, web searches and even makes calls. Unfortunately many of the calls have been the bearing of bad news, such as extended hospital stays, frantic calls for relatives to watch Addison so we can run to the er, and failed medicines.
6. The double stroller! The morning walks with Jake and Addison mean so much to me. To hear their banter, take on life, and amazement of the little things is truly inspirational.
7. Wine! I don't even think I need an explanation for Mommy's best friend.:-)
8. The Beach! The week spent here was such a calming, relaxing, much needed place of peace for our family.
Sure we would have made it through the year with out these luxuries, but they made it much easier.
The one thing I am certain we would have not made it through the year without, is loving caring, family, friends, and doctors. Without the support of the dear people who love us and care for us so much, I am not sure we would be where we are right now.
Thanks to everyone for everything you have done. Monetarily, and other. The kind words of support, the calls of encouragement, the PRAYERS and the meals. Thanks for the hospital visits and for sitting with me in the emergency rooms and in the hospitals. Thanks for not hanging up on me when I would call to ball my eyes out, or just flat out complain. Thanks for even answering the phone during the first couple months, as I know it terrified some to even see our number on the caller id. I knew it was getting bad when many of you would not even say hello. You simply waited for more "news.":-)
These are the things I could not have gone with out. The rest is just icing on the cake!
Happy new Year. Wishing you and yours blessing for the new year.
Here's to new beginnings. (Cheers)
“What if you gave someone a gift, and they neglected to thank you for it - would you be likely to give them another? Life is the same way. In order to attract more of the blessings that life has to offer, you must truly appreciate what you already have.”
~Ralph Waldo Emerson
God Bless~ Christine