J a k e

J a k e
at the beach in Destin

Jake's story

July 21st was a normal day, as were the days of summer before. Everything was in it's place. School days were approaching and the family was enjoying the last days by the pool, ignored bedtimes and high popsicle counts.

Then July 22, 2008 came....

Jake had his first seizure. I did not recognize it as such. It was not until he had several more of these "little jerks" and bloody noses that I thought this could be seizure activity. We were scheduled to see a neurologist on August 4th, after going through our pediatrician, however we didn't make it that far. I was awakened August 1st, by Jake in a full seizure (6 minutes long)...he started to turn blue so I called 911....

Here begins our journey......

...we were taken by ambulance to the hospital. Checked in. Released. 3 more grand mal seizures after being released. Checked back in. Sent home 3 days later. Another grand mal, this one lasting a whopping 11 minutes and taken by ambulance again. Stayed at Childrens Dallas for a week. Upping meds, changing meds and mixing meds.
Diagnosis: Epilepsy
Cause: Unknown
We have now found, through some absolutely amazing family and extended family, whom I will NEVER be able to thank enough, the wonderful doctors and nurses at Cook Childrens Hospital in Fort Worth, who are continuing to help us through this. We have had another grand last thursday, and are averaging anywhere from 5-30 seizures (jerks, drops, stares) a day. I was to begin back teaching at Apollo, but am having to put that on hold until the seizures are controlled. Jake is not able to go back to school until he is 30 days seizure free. We are still waiting for that ONE day. Please pray for our family and for little Jake. Although this is not the end of the world, it is a huge hurdle we WILL overcome. Pray for courage for Jake, understanding as parents, good doctors and for the right medicines.

Jake's mom, Christine


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Wednesday, March 31, 2010

Race for wishes

ON Saturday we got up bright and early for some family fun running!
We participated in our first 5k as a family, the Make a Wish Race for Wishes.

It was a blast!

Jake was so excited he even got up and dressed himself.

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Being almost 8 months pregnant, Matt never having run a race, 2 small kids and a grandpa, we were very unsure how long we would last on this cool, windy morning. We even threw around the idea of ditching the 3.2 miles and runnig the 1 mile Fun Run instead.

However, the momentum and energy of the event got the best of us and we all finished the 5K!

Before the race Jake got to meet up and superhug one of his wish givers Christine!
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Addison did a super job and ran the entire time, except when she had to stop and walk to wait on her pacers, Matt and Papa.


She can't wait to run another race.

Jake and I alternated running and walking. He did a great job and I was so very proud of him. As he approached the finish line his adrenaline got pumping, he picked up his speed, and he was grinning from ear to ear.

The crowd energetically cheered for the "little wish kid wearing the green shirt." Jake followed, and also cheered for himself. This kid never stops smiling, but I don't know if I have EVER seen him be so proud of himself.

As I parent, as I watched him cheer, run and smile across that finish line, the past year flashed in front of me.

Was this the same kid that a year ago, almost to the day, couldn't even hold his head up, much less walk?

Last year at this time, we spoon fed him all his meals in a highchair or on the floor surrounded by pillows.

Last year at this time, he would go through a couple shirts a day, as they were quickly soaked from his excessive drooling.

Was this the same child, who had sat in the ER far too many times in 9 months, waiting to be sewn back together?

Was this really my son running toward me, who was basically in a drug and seizure induced coma for 9 months of his life....just a year ago?

All these thoughts swirled inside my head in the brief moment as I saw the complete elation in his little face as he crossed the finish with a cheering crowd backing his every step.

That moment, with my daughter as happy as a lark from completeing one of her first milestones, my husband and family by my side, and my little hero dashing toward me, I am quite sure I have never been so thankful, nor proud to be a mommy in my life!
 My kids are fighters!
 They sure as heck can conquer any darned obstacle thrown at them.

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The Make a Wish Foundation is so much more than I ever thought it was! For them we are Thankful! They truly make wishes and dreams come true!


Let us rise up and be thankful,
for if we didn't learn a lot today, at least we learned a little,
and if we didn't learn a little,
at least we didn't get sick,
and if we got sick, at least we didn't die;
so, let us all be thankful.
- The Buddha

Monday, March 29, 2010

Purple Day!

Friday was Purple day for Epilepsy awareness.  This is an international event gaining more and more speed every year.  This year my coworkers supported the efforts  and they all donned purple for Epilepsy Awareness.

This Friday was "birthday breakfast" and my department was hosting this month.  We all get together and bake and cook breakfast to honor all thebirthdays in that month.  I got there early to set up, but soon become overwhelmed emotionally and had to duck out for a second.

As more and more faculty and staff took their place in line for the great buffet, I could not believe my eyes.  The lounge was overflowing with purple!

People were even metioning they had heard radios discuss this special "Purple Day."

I am not a huge fan of purple, but to see everyone backing us and showing their support was so, very touching and I could not get enough of that color I once despised.

I think to the majority of the purple wearers, it was simply an excuse to get to wear something other than ther Apollo spirit wear to school with their jeans.  However, it was soo much more to me.  To see soooo many wearing this color was so amazing.  I can not Thank them enough for their great support!  When I announced that our bossman had ok'd the purple wearing instead of our usual Friday spirit wear I was certain we would have a few supporting me, but never almost the entire school.  I am the Special education dept. dept head and I know sometimes when I am chasing teachers down about IEP's, or students needs, of questioning them about TAKS, I am not their favorite person.  So seeing this sea of purple was extra special.


One of my coworkers whom is an avid baker, cupcakes being her speciality, even went as far as to offer to bake purple cupcakes for this special day. Apparently, Mrs. Harper in her endless search for the perfect cupcake, had run across the Great Purple Cupcake project






She made several dozen cupcakes for the day to be sold benefitting the stroll for Epilepsy, Team All 4 Jake,  and the Epilepsy foundation.
Dallas stroll for Epilepsy,
>
Needless to say I was blown away about the efforts of my fellow Panther's and Mrs. Harper.

Thanks fellow Panthers!  You make each day a little easier!
I am sure proud to be a Panther!

"Love and kindness are never wasted. They always make a difference. They bless the one who receives them, and they bless you, the giver."


Friday, March 26, 2010

What was that?

I got a great email from Jake's teacher the other day.  I hound those ladies at his school, on a daily basis, to try and keep up with his accomplishments, areas in need of improvement, and for the daily seizure count.  I am certain, they are ready for this school year to be over, so the crazy lady with the ADHD boy can move on to someone elses room!:-)

Mrs. McVay, or Ms. Vay, as Jake calls her, was reporting that Jake was having a great day!  However, she also added some extra details that had me in tears with laughter.

Jake is very spolied, to say the least, by these amazing group of teachers in his class.  During nap time, in order to keep him quiet, and to closely monitor his tc's, Jake's sleep cot is positioned very near these girls.  He LOVES it!  Well, apparently, on this particular day, Jake decided to conjur up some conversation berfore he drifted off.  His conversation went as follows:

"He did tell me as I was sitting there with him trying to get him to go to sleep that I “needed to wear more clothes to cover up my boobies” hahahahahaha! So I covered up with my cardigan and he was like, “I can still seeeee themmmm!!” He was dying laughing. It was pretty funny. "

This statement came on the tails of another similar incident at the grocery store  just a couple days earlier.  Therefore, I was hysterical with laughter.

On Sunday , Jake and I went to the grocery store. As I picked out some flowers in the floral dept., the florist asked Jake if he would like a balloon. He , of course, said yes.  She gave him a bright blue balloon, which he quickly popped.  She then went and got him a new one.  This one, however, was complete with a little clip, to weigh the balloon down, so it wouldn't float away.  The clip could also, obviously be used to clip the balloon onto his clothes so he won't have to mess with hit.  The florist then proceeded to clip the balloon on Jake's jean pocket.

Before I have a chance to take my precious son, by the hand and turn to leave, he turns to her and asks:

"Can I clip it on my penis?"

I almost asked him "what was that?" as I was certain my little angel did not just say that, but then it clicked...yes he did.  I am not sure I have ever moved so fast away from one particular scenerio in my life.

Where does he come up with this stuff?

"Kids say the darndest things!"

Wednesday, March 24, 2010

The white stuff

Only in Texas! This is what our second day of Spring looked like. I could barely believe my eyes, as I peered out the window this past Sunday morning. Of course , I heard the forecast of snow, but never imagined the magnitude we would be impacted.

 
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Addison thought it was great. The minute her feet hit the floor out of bed, she was already grabbing coats, scarves, mittens and hats! The rest of us were not so excited. The warm coffee, while wrapped in a cozy blanket on the couch, reading the Sunday paper was far more inviting, than the cold, wet snow.


Jake tried to brave the blustery wind and wet for a little bit, but much rather preferred to observe the action from indoors....smart kid!;-)






and to think just a few days prior, we spent our days of Spring Break riding bikes, taking walks, having picnics, and playing at the Dallas Arboretum.

You have to love Texas weather!

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We had a BLAST at the arboretum this year...as always! But for the first time, we were able to get the twerps faces painted. usually, the line is literaly a wait of a hour or more. However, for some reason this year, we were one of the first families to snag a spot. They were so proud of their new creations. It was so much fun.

In Jake news....he has been improving or rather, we have had some improvement, after the steroid treatment. However, unfortunately, he still is fighting off nightly nocturnal tc's. They are much shorter, than even noted on video a couple posts ago, but they are still present.

Damn Beast!

For the LORD your God is the one who goes with you to fight for you against your enemies to give you victory."
Deuteronomy 20:3-5

Wednesday, March 17, 2010

The wedding

ON the day Jake got home from the hospital, Matt wanted to take us all to dinner. Jake took a shower and was urged to go get dressed, while Matt and I got ourselves ready.

When I finally emerged from the bathroom after my primping, this is how I found our son.
He informed me he was ready to go to dinner. I told him he couldn't go like that. He then responded "well, when I go to a wedding this is what I am going to wear!"

Wednesday, March 10, 2010

Nocturnal tc's

Damn these darn things!

They are back.

So is my disappointment.

I REALLY thought "this was it!" I knew it was a long shot, but I simply just had "that feeling!"

Jake, aside from the tc's, has been doing AWESOME, though! His critical thinking, memory, talking, and coordination are just amazing to me. I had thought he had been so much better for a while, so it is such an astonishment to see how much he can continue to improve and how resilant kids are!

I truly believe his attention is TONS better too. For the first time, maybe ever, he sat and we played a good 45 minutes worth of board games Sunday night. Usually, board games, would last maybe 5 minutes, and that was on a good day. For him to sit 45 minutes and stay on task, was nothing short of a miracle to me.

His teachers have been reporting similar stories at school.

He still has much room for improvement, but for now I will rejoice these baby steps.

Although, I am very pleased with the positive side effects of Jake's steroid treatment, unfortunately the seizures are back.
For the past two nights his seizure activity has been quite active. Last night he had at least 4 nocturnal tc's.

Nocturnal seizures are usually tonic-clonic. They might occur just after a person has fallen asleep, just before waking, during daytime sleep, or while in a state of drowsiness. People who experience nocturnal seizures may find it difficult to wake up or to stay awake. Although unaware of having had a seizure while asleep, they may arise with a headache, have temper tantrums, or other destructive behavior throughout the day.

Eventhough, he has had seizure activity and maybe even increased seizure activity, we are going to try and follow through with the rest of the 9 day wean of his oral steroid, prednisone.

Last night, as Addison and I watched meanigless tv and Jake fell into a slumber beside us, his seizures started. We were able to capture a couple on video. This is what we see several times on most nights.
(As this one seeems longer than many, you will see me swipe the "bump" on his chest. I used the magnet to activate the VNS, vegal nerve stimulator)
(
video

I see these in person quite often. But witnessing them on a screen, is pretty disturbing. I absolutely can NOT believe that I am watching my little baby boy. His contorted face and body, the weird noises, the helplessness....how is that my precious son?!

He has been battling this beast for about 18 months and I simply can't believe this is my son. I have watched him fall, bleed, cry, slur, drool, seize, and completely regress. I have accepted it all, but seeing it on a screen is absoutely unbelievable. There is no way I am watching my baby boy!


No matter how steep the mountain - the Lord is going to climb
it with you.
- Helen Steiner Rice

Sunday, March 7, 2010

Normal , at least for now

We are out of the hospital!

Matt was with Jake , as he was admitted Wednesday for the BIG steroid treatment. While it was absolutely killing me, being away from him and not being able to be the one to interrogate the doctor and nurses with questions, I needed to stay at work for in the infamous TAKS test.

I arrived Thursday morning with Addison. We relieved Daddy of his duties. Addison also met and talked with the child life specialist. She has been a having a tremendously difficult time watching Jake continuously seize and be shuttled to and from appointments and hospitals.

The meeting , along with weekly counseling sessions at school, have had a very positive effect on her. She still gets very weepy and sad watching Jake and his everyday struggles, but also understands it a bit more now.

It is so heartbreaking watching both my babies struggle so much emotionally and physically. I want to just yank It from both of them and protect them from all of this.

As we arrived Thursday morning, I was disappointed to learn that Dr. H had already met with Matt, therefore I probably wouldn't be able to bombard him with questions!

Matt however reported that Jake's last seizure was the previous night. That was great news.

Dr. H ended up coming back around Thursday evening and informed me that Jake was doing great! Not only did he look a lot better, so did his eeg!

It turns out by the time we left Saturday morning, Dr. H used the words 'normal" and eeg in the same sentence!! This has not happened in at least 18 months!

You can only imagine our elation right now! I realize things could make a turn for the worse, as they did August 2008, but for now I am praising God!

Not only does his eeg, look very much improved, but so does Jake.

He is definitely swollen from the treatment already, however he is doing so well!

His mind and his conversations seem so real, normal, and clear. I find myself just staring at him while he talks, wondering how things can turn upside down so quickly.

He laughs, he remembers, he jokes, he speaks so clearly the past two days. I am beside myself with glee! I have said it before, but I guess I didn't realize how much he could truly improve. Even his drooling and his gait appear so much better to me!

I honestly can't quit staring at the kid and waiting to hear what comes out of his pretty, little mouth next.

I am , however, cautiously optimistic. We will take one day at a time, but for now we will live and love in this moment! Because here in this moment, with my family all in own house, and healthy for now, I am elated and could absolutely not ask for anything more. I have all I have ever wanted! I could not ask for more!

"I remember my affliction and my wandering, the bitterness and the gall. I well remember them, and my soul is downcast within me. Yet this I call to mind and therefore I have hope: Because of the Lord's great love we are not consumed, for his compassions never fail." ~Lamentations 3:19-21