You've come a long way baby!

Happy Birthday sweet boy! 
My, how far you have come!  You never cease to amaze me little man.  Keep moving those mountains and let nothing stand in your way!

Jake's 1st birthday

Jake's 2nd birthday

Jake's 3rd Birthday

Jake's 4th Birthday

(swollen and fresh from the hospital)

Jake's 5th Birthday

Because time itself is like a spiral, something special happens on your birthday each year: The same energy that God invested in you at birth is present once again. ~Menachem Mendel Schneerson

again?

Ugghhh Again with the numerous tc's?

Last night/ early morning Jake logged 6 nocturnal tc's again.  He had been doing so great!

I seriously wonder, if he gets so worn out over the weekend that his little body just can't handle it and the seizures are the only way it knows to cope?

Who knows, but looking back, he was on a pretty good run last week as well, until Tuesday.  He had about 6 tc's on Tuesday and then improved again, with little to none, until last night.

Ugghh it gets so frustrating. Just as I think things are getting better, or I am starting to make connections between activities and diets and seizures, something like last night happens.

I am ready for this whole mess to leave our lives just as quickly as it entered.

It's the little things I miss.  The things we have once so taken for granted:

signing him up for  sports

keeping him up late, past 7:00, to watch movies, work on puzzles, or simply enjoy the great Texas weather

rewarding him with sugary treats

date nights (not many feel comfortable enough to stay with him.  It has been over 18 month since we have gone out just the two of us! I take that back, in October The kids stayed with my parents over night, as Matt and I attended the Roundup for Autism...hmmm how many months ago was that?  How far along am I?:-))

leaving the house without a suitcase full of medicine and "emergency medicine"

If the beast was to leave today, I would not miss:

THE ANXIETY

The phrase "we can't because of Jake" or  always telling Addison later b/c Jake can't, or Jake can't have that and it completely affecting Addison as well.

sharing our bed

the daily medicine administration

the total and complete over anyalzation of EVERY little thing he does.

The feeling of embarassment or the need to apologize for  his EXTREME ADHD and behavior brought on by seizures

wanting to back out of every playdate, as I dont know how he will act

and mostly..... having to explain to people why I have no desire to be social and "hang out," as being a working, mostly single, as Matt travels so much,
pregnant mother, of a child with special needs, gets quite exhausting!

(I will not miss the high school drama and gossiping behind my back that goes with the above either)

The lists could go on and on....

For right now though, we are good.  I just simply can't wait for it to be GREAT!

  Jake, and Addi, have come so far in this journey and I am certain it has made them much stronger people.  I am amazed with them daily.  They have so much compassion, empathy and understanding.  Those traits can never be taught!  and I am certain they would not  possess them, had the beast not come for a visit.  They are certainly my little hero's.  I continue to learn from each and every day.

"We must accept finite disappointment, but we must never lose infinite hope."


Martin Luther King

Texas Bluebonnets

 

The kids and I had some fun romping in the Bluebonnets yesterday. I am practicing with manual settings on the camera, so any opportunity is a photo opportunity in my eyes! Luckily, the kids humor me and play along with my little adventures.

The twerps had a blast smelling the flowers, and running through "Texas!" They both just rcently had lessons at school discussing all things Texas. So this was actually a perfect lesson wrap up! Addison was sure to tell us MANY times that the police would come arrest us, if we picked one of the state flowers.

(these pictures look MUCH more grainy, than they did before the "blog upload." I wonder what I am doing wrong?)

 

 

 

 

 

 

Pooper Scooper!

Pooper scooper= me cussing

Jake had been having a great seizure free run!  I think it had been about 3-4 days without any seizures.  That is our longest stint in a while.

However, last night/early morning, this was shattered.  For what ever reason from between 3 am and 6 am he had 6 tc's.  They were little and under 10 seconds long, but still, that seems like a pretty big cluster.  So I finally just woke him up, so this dreadful sequence would halt.

I feel like "something"  must have changed last night to make the beast come out and play.  Was it something he ate?  that he drank?  was he too tired? growing spurt?   Did I give his meds at a different time?

 Who knows.... it gets exhausting analyzing and over analyzing every little things that child does.

I feel like I am living in  constant "clench mode."

Hopefully the days to come will be much better!


The greater the obstacle,

the more glory in overcoming it.
~ Moliere ~

Hair today, gone tomorrow

This is how our sweet turd,otherwise known as Jake, approached me about a week ago.

Yes, with a large wad of his sweet, baby boy, blonde locks in his hands.  I almost fell to the floor in a panic!  Where was the "spot" that all this hair came from.  Luckily, because he has so much hair, a bald spot was barely visible! 
Phew, because that hair makes me smile and I don't ever want him to lose it.

Although, I love his long hair, especially when it curls in the humidity, one must get a trim every now and then.  Jake was certainly due for a cut this  apast week.  The Texas heat and that mop of hair scres the begeezies out of me, in regards to seizures.  I also, figured, it may be a good idea for him to actually be able to see what he is trying to read in school, and where he is trying to travel to down the hall.

So after gymnastics Thursday, I took him to a new hair salon, as his normal kids place was closed.

Jake is stoked about getting his hair cut. I am a tad nervous, as I don't trust many with my baby's hair.  My "sign" should have been when Jake looked up at the hair dresser, now armed with shiny new blades, and said "how'd you lose that tooth?"

She proceeded to cut and it appeared to me she was acknowledging my request to "keep it long" " just trim it up."

It took about 3 steps out of the door, before the waterworks started.  These weren't "pregnant, drama queen" tears, these were "MY BOY HAS A MULLET" tears.  As Matt said, "he looks like he should be driving a 76' Camero....those words did not really help the situation.

 

Luckily, I was able to get an appointment with Jake's regular hair stylist bright and early Saturday morning.  Good thing, because I was sure glad to quit walking him around with a bag over his head.

His stylist, literally did not even recognize him.  She tried to give "that boy" away to another hair dresser.

She did do a great job of cleaning up the diaster, that was Thursday's hair massacre, but now all his white blonde has disappeared, as did his lovely locks of curls.

He certainly looks handsome (pic coming this evening) and is very proud of his new ability to lift his hair into a faux hawk, but I am still completely heart broken. 

Is it wrong that I seriously considered dying his hair this weekend, or can't wait until he can get into the pool so I can pour lemon juice all over his head to bleach his hair back to "surfer boy blonde?"

Some of the worst mistakes of my life have been haircuts.
Jim Morrison

Strollin'

Wow! The stroll has already come and gone. I feel as if we have been preparing for the big day for months and now it is over...until next year... so for now we can only plan how to make it bigger and better.

Once again, it was an amazing day filled with great friends, new friends, many supporters, and many amazing people.

Not only did our team grow to close to 100 this year, I believe the stroll was a much bigger event as well.

 

Again, driving up brought a whirlwind of emotions. Not knowing what exactly to expect, who will would see, and simply seeing all the masses of people together for a common cause was so overwhelming.

Again, flashes of last year danced around in my head. As I tried to chat with friends I had not seen in literally years, introduce myself to new friends this beast has blessed me with, and try to pay attention to close friends and family, I could not help but picture last year.

Last year, we had Diastat out and ready, Jake was strapped into a stroller and he was wearing the lovely blue helmet. Now, here he was , just a year later, running, climbing and chatting with friends, family, and teachers.

I could not help but praise God for every minute he has given us with this little boy. Praise him for how much he has helped Jake heal. Praise him for helping our family get through this and Praise him for the support we have been given.

Walking around the grand Dallas zoo last week, you could not walk very far without spotting an "All 4 Jake" tshirt. We were everywhere! We had invaded the zoo! It was so very touching knowing people had come out of the woodworks for our little guy and our family.

What had we done to deserve such a overflow of kindness? Why were all these people there for us?

I still can't wrap my head around the magnitude of support and blessings that have been given to us throughout this ordeal. Witnessing this support first hand, through the wearing of t-shirts, selling of cupcakes, making of ribbons, gathering of donations, prayers, and words of kindness, is simply surreal to me. What have we done to deserve such support?

On top of all this support. ASI gymnastics has graciously offered to host a birthday party for Jake next week. This will be Jake's first "real" party! David Holley, with the Epilepsy foundation and ASI gymnastics, whom I met last year, took it upon himself to provide Jake with his first party in a very padded enviroment! (this very much eases mommy's anxiety!:)) Donations can still be made in Jake's name to the Epilepsy foundation. We would love to raise at least 200 more dollars, the cost of the party.

Thanks you all for all your support! Your presence, whether physical or emotional, meant the World to us!

At times our own light goes out and is rekindled by a spark from another person.
Each of us has cause to think with deep gratitude of those who have lighted the flame within us.

How far he has come

I have been reflecting upon where Jake was a year ago and can not believe how far he has come! He is my hero!

April 2009

I simply pray that this "good run" continues!

Faith isn't the ability to believe long and far into the misty future.
It's simply taking God at His Word and taking the next step.
- Joni Erickson Tada

Stroll for Epilepsy!

The Dallas stroll for Epilepsy is just days away! If you are in the area, please Join Team All 4 Jake and come with us for a fun day at the zoo, raising Epilepsy awareness.

If you can't make it but would like to donate to the awesome cause visit Jake's page

There is also another great way to donate, but also get somthing in return. PLease visit ASI's silent auction!


ASI SILENT AUCTION
You have until the 9th!
Birthday Parties
One Year of Gymnastics
Private Lessons
and three great sports packages
NNS O’Reilly Auto Parts 300
Friday April 16
2 Tickets to the Novacopy Luxury Suite
Garage and Pit Pass
Includes access to events all day with food and beverage
Value $300
NNS O’Reilly Auto Parts 300
Saturday Package April 17
2 Tickets to Novacopy Luxury Suite
Garage and Pit Pass
Includes Food and Beverage all day!
Value $400
Texas Ranger vs. Detroit Tigers
Friday Night, April 23rd.
4 Tickets to Luxury Suite
Includes food and beverage, food value $200!
Value $400 - 5 Packages available.
Stop by any ASI location today to bid!

let's go strollin'

"Nate's walk"

During Spring Break the kids and I have taken to going on a walk after dinner. The Texas Spring evenings are absolutely beautiful and it is a wonderful way for all of us to let our dinner settle, as well as shake off any extra energy that may be hindering us from settling down for bed.
The other night they decided to make it a "Nate's walk",or as most would call it a nature walk.

Jake and I have been talking about Easter, The Resurrection and "Punches Pirate," Pontius Pilate.

He is enamored by learning the  crucifixion of Christ.

So this particular evening on our "Nate's walk" Jake dressed himself to go "seize Punches Pirate." He was armed with head gear and even a sword.

 

 

Every tree he spotted become the cross Jesus was nailed to, every, any sort of sharp object, became the throns that adorned Jesus's head. And every moving object became "Punches Pirate," so Jake would chase down the "Pirate," to "capture and seize the bad guy." (his words not mine)

All this chasing and seizing and blood talk, made me realize maybe I should keep the bible lesson teaching to the pros at church. Apparently all my son got out of my Easter, resurrection bible study, was blood, guts and the enemy!:-) (/j/k  he actually learned a lot from our little talks, and I even think he gets the TRUE reason fo rthe day)

Meanwhile, as we chased the villians, Addison collected "things from nature."

Can you tell whose pile is whose?

 

 

I love our after dinner walks and very much look forward to them every evening. Each one is certainly a new adventure.

I am so very fortunate to have this time with my children and discuss the things that really matter and make us who we are, like the Death and Resurrection of our Savior, Jesus Christ.

Wishing you and yours a very blessed and Happy Easter.

"He is not here: for he is risen, as he said. Come, see the place where the Lord lay. And go quickly, and tell his disciples that he is risen from the dead; and, behold, he goeth before you into Galilee; there shall ye see him: lo, I have told you. And they departed quickly from the sepulchre with fear and great joy; and did run to bring his disciples word. And as they went to tell his disciples, behold, Jesus met them, saying, All hail. And they came and held him by the feet, and worshipped him. Then said Jesus unto them, Be not afraid: go tell my brethren that they go into Galilee, and there shall they see me."
-- Matthew 28: 6-10 KJV