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
Thursday, July 30, 2009
I met some teacher friends at Melissa's house for a lunch catching up with some awesome mentors and great friends I have met while teaching at Apollo. Again, I mention Melissa, because we really don't socialize on a casual basis, however she is a fine Christian woman who always seems to be there in very important times in my life.
For some reason I find that ironic. I am unsure why i feel that's ironic, or why she has been there at the most trying times of my life. Maybe because of her great Christian faith and I know she is praying for our peace and for Jake's recovery.
Anyway, we were all sitting at the table enjoying a yummy meal and the phone rang. How rude of me to have the phone at the table,but I knew I was expecting this call.
It still seems so weird to hear the words that came out of my mouth, but I excused myself by saying, "sorry, Jake started having seizures, so hopefully this is his neurologist."
What? Did I just say that? my son just started having seizures?
I remember the wide eyed looks at the table, as if I just said my mom died. When I came back to the table, i felt as if surely there was an elephant in the room.
However, I dismissed Jake's seizures as nothing at the time, so the elephant really didn't bother me one bit. He and Addison were at school, so Jennie and I went to catch up some more.
We got an appointment set up for Monday August 4th...almost a week away.
Tuesday, July 28, 2009
I described on the phone what I was worried about and they thankfully got me in in a matter of hours.
The ped. was concerned enough, to have her office call and try get Jake a nuero appt. ASAP.
ASAP, apparently meant whenever they got a chance to look at the books.
It was several days before I heard anything about an appt.
This should have been my first sign!
God Bless~ Christine
Sunday, July 26, 2009
this one does too.
Sooo...a year ago today my sister in law and I , took my mother out for her birthday to see Mama Mia and then to Neiman's for their awesome food, specifically their popovers! yummo!. While there we saw an amazing woman that I shared a classroom with my first year of teaching, have come to be great friends with and even randomly saw her at a friends funeral the the other day. I think Melissa was placed in my world for a reason. I am not quite sure yet exactly why, other than her being an amazing person, but the way I run into her in random parts of my life and met her is astounding!
Her and her husband write amazing books by the way. I give them for most baby and wedding showers...check them out!
(I apologize for putting the amazon site up, but thats I really all I know how to do. you will not be disappointed if you buy these books either!)
Anyway, so we go see mama mia, have an awesome meal at neimans.
I go out to my car and notice a flat tire. Not the kind of flat like I can drive, but really flat, like I need help pronto!
is this a sign?
So I rescue Matt from the twerps, as I believe, he had a golf date, and my wonderful father goes with me to fix the car, as my mom watches Addi and Jake.
All this time, I am feeling uneasy.
Besides the fact I never get flat tires, and Jake has had weird "episodes" the past few days...I feel a "storm coming on." I don't know how to explain it, but I really did.
We got the car fixed. Picked up the kids and went back home.
I tell Matt, please rock Jake and let me know if you see anything strange.
He rocks , maybe 2 minutes and I hear "Christine, come here!"
"yes?" while running into Jake's "cowboy room."
"he did it!"
"he did what?"
"what are you talking about"
"he totally straightened up, was stiff and shook"
This was only a few seconds, but completely foreshadowed our life to come in the next week or two, if not the next year.
God Bless~ Christine
There really is a reason for the car story, Melissa and Mama Mia.....more to come;)
Saturday, July 25, 2009
Matt was out of town. The kids and I spent a full day swimming, so we decided to have a nice relaxing evening playing some board games and watching movies.
Addison and I were on the floor, when Jake got up to do a "happy dance," or something of that sort for making a winning move in the game.
As he stood up he almost immediately fell tummy down on the board game, flopped for a brief second and then was up.
Again, my first reaction was to get angry with him for ruining our game setup.
I , again, started to interrogate Jake about his actions....
That's when i saw "it."
That look in his eyes.
He had no clue what had just happened and he was just as confused and dumbfounded as me.
This time, however, I did find it strange enough to call my mom and see what her thoughts were.
Since Matt was coming home the next day I didn't call him, but just decided to watch Jake and monitor him for anymore strange events.
A year ago today....
Jake had his first bloody lip from the BEAST.
He was sitting at the kitchen table eating a happy meal from "Uncle Donalds."
I was right next to him, probably swiping some fries, when it happened.
In a quick instant his head jerked straight forward into the table.
When he looked at me with accusing eyes, as if I had slammed his tiny face into the furniture, his poor little nose and lips were covered in blood.
This was the first of many bloody events caused by this damn beast. If I only knew then would would transpire over the next year.
God bless~ Christine
Wednesday, July 22, 2009
I took the kids to Costco, to find some retreat from the Texas summer heat. We did this about once a week. Most of the time we would not even buy anything, just take in the awesome things they had to offer and maybe even snack on all the samples for lunch.
Jake and Addison had just received an orange smoothie sample. We then made our way to the book aisle so the twerps could look at all the wonderful reads out there.
Right as we pulled next to the first selection, it happened.
Jake's arms flew back and his smoothie went flying.
It was certainly a brief second in time. A brief second that would transform the way we live and most certainly the way we interpret life.
My first instinct was to get angry at Jake for flinging his smoothie and almost hitting the pristine books waiting to be purchased.
Then I saw the look in his eyes.
I interrogated him for awhile.
I asked him "what happened?"
"Jake, did you do that on purpose?"
"why would you do that, that's naughty."
The kid was dumbfounded and his eyes told me the truth.
He had no clue what had just happened!
I quickly took the kids home and didn't tell anyone what happened, not even Matt. I dismissed it as nothing.
Nothing, however that "nothing" set a bad taste in my mouth for Costco and I believe it was not until maybe 3 months ago that I got the courage up to set foot back in that mega supermarket!
Hindsight, i think there was another incident a couple days earlier.
I was at Lifetime, getting my workout on with Abrea and Ms. Sarah. Then it came.
The dreaded teenager entered the studio. Dreaded, because everyone in the room knew somet unexpecting parent was going to have to cut their workout short, as their child either needed a diaper change, is crying, or got hurt.
It had been almost 2 years since I was the victim of the "call" and had to make the trip down the stairs to pick up my child, so I was smiling to myself waiting to see the poor soul who had to miss burning those extra calories.
Here she came...headed straight to me!
NOOOO... I only need about 15 more minutes!
I get down to the childcare center and there is Jake full of blood.
I ask another teen, what could have happened and I saw it.
That teens eyes were as big as saucers. Just like I would see in Jake a couple days later.
It did not hit me until mid September or November that this incident was most likely a drop seizure.
I will never forget the look in that lads eyes. The same exact look Jake gave me in Costco.
I still have yet to be back to the gym.
God Bless~ Christine
Sunday, July 19, 2009
"Mommy, I prayed real hard tonight. I prayed that these stupid seizures would leave my head."
"I asked him for no more pokes, and no more rides in the ambulance."
"I don't like to see you cry mommy, why can't these seizures leave me alone."
"I don't want to go to the hospital again, mommy...will I have to go again?"
As a mother this is heartbreaking! Why can't I help my son ?
I fear "they " are coming back.
I have been extra anal asking Matt and my mom what they notice in Jake. They reassure me, he still seems great. I am not so sure. His words tonight make me feel as if he feels something coming on.
God Bless~ Christine
Jake on steroids.
and Jake now.
Wow, it is amazing how life changes right before your eyes and you don't even notice, as you are too caught up in "everything else" that is not as important as the things that really matter!
Tuesday, July 14, 2009
I do wish things could have been different and more like they were last year.
Thursday, July 2, 2009
We recently went on a short trip to Hot Springs, Arkansas. It was fantastic. It was busy. It was non-stop. And it was too short. It was GREAT times!
My good friend and her dear husband asked us to join them for a Lake weekend at Lake Hamilton. It is such a gorgeous place. We had NO idea a lake could be such a beautiful community.
This weekend was truly therapy. Joanna and Morgan were the most awesome host and hostess. There was never a dull moment. My checks and stomach truly hurt still from all the laughter that was had during this weekend.
We swam, we skied, we talked, we cried, we laughed and we RELAXED. I tell you, therapy.
Jake and Addison loved going tubing. They begged Morgan to take them again and again and he so graciously obliged. The kids even went water skiing!
Yes, our 5 year old and 4 year old went water skiing!!
Addison went the first day and got up like a champ. However, her mother, holding the other end of the rope, panicked and let go before she could have a good ride.
Joanna, had the honors of holding the rope for Jake. The stud got up and went almost 200 yards on his first try!!
The kiddos got to drive a boat.
and definitely wore themselves out!
Although the weekend was outstanding, there were also setbacks. Some I can not mention, but continue to pray about. Others for Jake.
Jake did have several tc's this weekend. It is hard to tell why, as he did get regular sleep and we did make sure he was in a cozy bed for all his naps. It was hard, sad, and discouraging. However, seeing that little boy, who a couple months ago could not hold his head up, walk a straight line, talk without slurring his speech, water ski...was nothing less than amazing!! he even had an audience on the lake watching jr. attack the wake!
Our kids rock and give us motivation to conquer each day.
We are sooo grateful and thankful for this weekend. Words can never explain to Joanna and Morgan what it meant to us. This was truly our wish come true.
Monday morning, recovering from the fully eventful, non-stop weekend, my cell phone rang pretty early. This is strange, as everyone knows I love my peaceful coffee time in the morn, while the kids either sleep or watch cartoons.
Hesitantly, I answer the call. The voice on the other end informed me that they were from the "Make a Wish" foundation.
Jake is going to be granted a wish!
I swear the Lake Hamilton weekend, to us, was a dream or wish come true, and to hear the words coming on the other end of the receiver that Jake was to be granted a wish were truly outstanding.
It is ridiculous, embarrassing, and amazing that this call even came to us.
Who in their life, would ever think their kid would ever qualify for make a Wish, much less be granted a wish.
Nothing ever happens "to you." That's what I have always thought. It's always "someone else" or a friend of a friend. I honestly still can't believe I write a blog about my son. It's not supposed to happen to "you."
We are better people for what we were given. It is not easy. However, we see the joy in the little things, that we used to not even merely see.
Thank you Butler's for an amazing weekend.
Thank you Make a wish for making Jake's dreams come true!
God is amazing!
rooted and built up in him, strengthened in faith as you were taught, and overflowing with thankfulness.
Colossians 2:7God Bless~ Christine