Doose Syndrome Epilepsy Alliance

I would LOVE for everyone to go check out the new Doose website!  It is updated and gorgeous!

http://doosesyndrome.org/



Jake's story is on there, as well as several other kiddos who are fighting the beast with him.

What's amazing about this site and Doose/Epilepsy awareness, to me, is that when I was searching for ANY sort of information on Myoclonic Asatic Epilepsy, aka Doose, just 3 years ago, there was nothing to be found.  What we did find was not encouraging news at all.  We would have rather not read any of it.

The prognosis was always very bad: mental retardation, possible death, lifelong seizures, learning disabilities etc, etc.

 I am quite certain that even Dr. H had his hands full with Jake and his case.  I vividly remember the look in his eyes...the look of compassion and yearning to help our baby boy, but not knowing exactly how to do it.  I think in some sort way Jake was a little Guinea pig, a learning tool.  They, the Dr.s, were learning, just as we were also learning. 

The difference between Dr,.H and the other neuros, is that he tried!

He tried to save our little guy and bring him back to us.

 We left one neuro after a week hospital stay and the parting words were "we don't know, he is a hard case."  and the other; we were fired from!

Dr. H and the Cook neuro team fought this battle for us and even let us drive with them through it, instead of insisting we do things "their" way. 

Over the years, this  unawareness and these questions are changing to ones of more certainity. 

Changing thanks to awareness!

Thank you all for all you do in helping to raise awareness for this horrible disease.  The more we talk about it, and the more we share, the more everyone will become aware and try to fight the fight with these precious kiddos!

What can you do to spread the word?

Awareness without action is worthless.
Phil Mcgraw

1 down 2 to go

In Mid-November Jake and I went back to Cook Children's for, maybe the most anticipated EEG yet.  The one that tells us whether or not his brain is still being bombarded by seizures.  The one, that once again, reset our lives forever.

As always, Jake was super stoked about going to Cook's and seeing Dr. H.  He was a little annoyed he would not be getting an iv or having blood drawn.  Crazy Kid!  But  his spirits lifted when he saw all the leads (wires) that got to be glued to his head.

Jake was a super trooper getting hooked up with the leads.  Another thing that has never really bothered him.  I think he gets more pleasure from it, than pain, actually. He and the tech were cutting up and really laughing hard, until Jake said  "I better stop, or I'll pee my pants!":-)

The intention was to start the eeg at 8am, have an 8 hour eeg and then meet with Dr. H at 4:00pm to go over the results.  Jake was hooked up almost 2 hours when the tech left and grabbed Dr. H.  As he walked in, my stomach was in knots and I quite possibly could have thrown up! The anticipation of what he was goingto say was more than I could handle.

The last time a tech left after only a little bit of watching the eeg, and went and got the Dr., it was not good news.  Jake was seizing more than her wasn't and had to be admitted ASAP.

I completely had flashbacks as they both re-entered the room on this day.

However, as life has it's valleys, it most certainly has it's peaks as well.

Jake's EEG was so clear, they thought he was ready to go home!
As, this also meant a med wean...one that I was VERY much excited for, it also meant that "security blanket" for me was going to be taken away.

I voiced my concerns, so  we all agreed to let him sleep while running the eeg as well, as that is when most of his last lingering seizures were happening.

So he slept.....

and I watched....

After a 2-3 hour nap, the EEG was still clear!
I almost couldn't believe it!

Dr, h instructed me that we were to wean what little Depakote he was on.  The wean should been done instantly and been more of a STOP than wean.  I was too chicken though, and insisted on weaning anyway.:)

The wean has been done now for about 3 weeks.
It is completely amazing the transformation we have seen in Jake!
He appears so much clearer. 
His hands don't tremble, he doesnt drool near as much, his handwriting and desire to do school work has done a 180, and he can carry on a "real", clear ,vivid conversation.  His whole thought processing is just incredible.

I can not even imagine the drug induced fog he has been living in for 3 years straight.  His little brain having to metabolize all these drugs while also fighting the electricity that are seizures is just completely baffling to me.

However, We are not done yet.
He still has 2 more to go.

Jake goes back Friday for another 8 hour eeg.  If that one is still clear, the Felbatol is the next to go.

Yikes!

I can't believe the wish we have been wishing  , for 3 years, may actually be coming true.

Please keep Sir Jake in your prayers, as he battles this damn beast.


Psalm 18:32-34 the God who equipped me with strength and made my way blameless. He made my feet like the feet of a deer and set me secure on the heights. He trains my hands for war, so that my arms can bend a bow of bronze.

embarrassed!

I am so embarrassed, guilty and dissatisfied with myself!  seriously has it been since May that I have last posted?

May?? uggh hate that i have let it get that long.  I keep saying..every day since the last post...."
I will post tomorrow."  obviously that has not happened.

When  I came and looked at the blog tonight I  now know why it has been so long.  I have mostly written about hard, bad times.  That was easy for me.  It was my release.

I know it's cliche, but I truly believe no one can truly understand.  probably most of my Doose mommas,and my cook epilepsy mommas, but no one can truly understand what hundreds of seizures a day really feels like.  The trips to the er, the not knowing when another one will come, the feeling guilty for having to ask any someone to help with another Dr. visit, er outing, or car pool.  Thge anxiety it has created is like no other.

So those were the hard, bad times, right?   Now, looking at this page, hearing the music, it takes me back.  I have avoided it on purpose. I often wonder who I was before it  all .  What i used to be like?  Did I worry 24/7, not sleep at night, like I do now? Was I a nervous nelly?  Did I stress and over think every little moment of the day?  Did I every let loose and relax, as I can't seem to do now? 

Jake's doing well.  he's doing VERY well.  and quite frankly i don't want to jinx it by writing about it. He is doing great, so great, even writing the words brings tears to my eyes. 

Jake has made great friends here and his kindergarten class is amazing (he is repeating kinder).  he is reading sight words, getting along with peer age friends, and even throwing temper tantrums :) He still VERY much struggles with writing and some social issues, but he has made great gains, since......

his last seizure on Thanksgiving Day 2010!!

so we will travel to Cook Children's in November for an EEG.  If the EEg looks good, Jake will start a med wean.

Crap...talk about worry!!! i am so very excited at the thought of one less drug, but of all the drugs, approx 10, he has tried I know Depakote had worked for him.  so Depakote would be the first wean.  the reasoning is because Dr., H believes, as do I, depajkote is the reason behind his constant tremoring hands, severe adhd, and lack of focus.  

If that wean goes ok, assuming eeg is clear, we will then go back to cook Childrensfor another eeg and another wean.

I ,honestly, i have not been myself in 3 years in regards to anxiety...just waiting, not sleeping, watching baby monitors, making sure he isn't too hot, too tired, too hungry.  I can only imagine it is going to be a million times worse in months to come.

Rather, I hope hope it becomes worse, as that means his eeg is looking good and we are detoxing our baby of these drugs!   I Will just need more drugs.:)

 Therefore I tell you, do not worry about your life, what you will eat or drink; or about your body, what you will wear. Is not life more important than food, and the body more important than clothes? Look at the birds of the air; they do not sow or reap or store away in barns, and yet your heavenly Father feeds them. Are you not much more valuable than they? Who of you by worrying can add a single hour to his life?" Matthew 6:25-27

Beautimos!

Well the Dallas Stroll for Epilepsy has come and gone again.  I can NOT believe it!!!  Seriously, it has been way too long since my last post and now even 1 week or more since the Dallas stroll for Epilepsy!  What a wonderful event! We had gorgeous weather, a HUGE crowd, and much love to go around.

Team All 4 Jake raised over $3,000 and our team grew to over 95 members!

My little brother, my mom, my sister in law and niece and nephew were able to join us this year.  How special that was. 

Unfortunately, with our busy lives, which is a great thing, I have not even had a chance to upload any pictures yet.

Busy lives, being a great thing, meaning.....we are now busier, as we don't feel the need to sit around the house and wait..... and watch..... Jake have seizures.

But, over Spring Break a dear friend, and an awesome photographer took some pictures of the twerps and I just had to share, as they make my heart melt each and every time I see them.  How do I choose which ones to post is the question...

http://orlalavellephotography.com/

Facebook

Children are not the people of tomorrow, but are people of today. They have a right to be taken seriously, and to be treated with tenderness and respect. They should be allowed to grow into whoever they were meant to be. 'The unknown person' inside each of them is our hope for the future.

-- Janusz Korczak

tough times

Yesterday was a pretty tough day.  I didn't expect it to be such,but geez it sure turned into one.  A couple of my awesome coworkers had asked me to talk to their club, as they are the sponsors.  Since Jake was inflicted with this dreadful disease, these ladies have been there supporting ALL 4 Jake every step of the way.  This year , their club decided they would make purple key chains to sell and all the proceeds would go to the Epilepsy foundation.  these kids and working moms, newly weds, and young teachers have stayed after school, spent time on weekends, and even used their own money for our cause.

So yesterday I went , as they made purple key chains, to introduce Jake and tell them a little about Epilepsy.

No big deal.

Now, those 30 minutes, are haunting me.

I LOVED being there for the kids.  I think they saw me as some strong person and Jake as a normal kid.  The questions they asked were absolutely amazing. 

But, I felt like a little insecure squirrel.

 I have not been in that place in a LONG time!  I have remembered and reminisced, but not like this.  watching Emmet's video with my peers and the students and telling them about Jake, I again caught a glimpse of what he has had to conquer.



Unfortunately, now I am more afraid than ever.   Afraid the beast will show his ugly face again. 

I can't stand that guy and what he did to us.  I hate those memories.

I hate that when Addison hears a siren she goes into fetal position and bawls hers eyes out, no matter where she may be.

I hate what he has done to our family.

I hate that we have a story to tell.

I hate this beast!

But I do love that I have over 100 Doose mommy and daddys telling, sharing and fighting for our story right now in DC!

The Doose Team has taken over DC this weekend for National Purple Day in hopes of turing that White House Purple!

All of this did happen for a reason, no matter how hard it is/may have been.



"Fall seven times, stand up eight"
Japanese proverb

Addi's story

It's been a while.

I feel like since Jake is doing better I don't have a reason to write.  Like people don't want to hear just the same ole' stories about what's going on in our life.  I struggle with things to put our there to the "public."  Like the negative, the worry, the pain, is a much better read than what I may have to share these days.  Don't get me wrong, we still struggle...in many ways, but gosh, looking back, I can't believe where we have been.  I know I say that often too, but today was just hard.....more on that tomorrow.

Because I struggle with his so much, and tonight I read a story of Epilepsy that struck waaayyy too close to home, and I am still trying to process all of it, my precious, sweet, 7 year old, and Jake's big sister will tell her story tonight:

Exodus 23:25



"So you shall serve the Lord your God, and He will bless your bread and your water. And I will take sickness away from the midst of you."

Gives me chills

I took jake to the neurologist on Tuesday.  It has been a long 3 months since our last appointment.  Not much ever changes at these appointments....I ask questions, give Jake updates, he checks reflexes and such and we are on our way.  Why then, do I count down the days in anticipation of the next appointment?  I am not quite sure of the answer to this question.

With that being said, this appointment was a tad different than most.  Usually, or at least , the past several appointments, I report that Jake is still having nocturnal tc's.  Most of the time 2-5 a night, 3-5 times per week....blah, blah , blah.  We then always agree to stay our course of treatment and hopefully the beast will decide Jake's brain is no longer taking renters.

This time though, Jake reported his news.  Jake told Dr. H that he has not had a seizure since Thanksgiving Day!  That's 3 months!!!Talk about giving thanks!  Dr. H grinned an awesomely huge grin!  I then, had nothing to tell him...nothing that is except, I had been called in for a teacher conference.  Scared as I was, it was to be told Jake is doing GREAT!  She informed me that since November his skills have really improved.....coincidence?  Jake has also stopped taking his adhd medicine and is doing just fine! coincidence?

As you know, I have been MIA from blogging.  As you also know, I am very superstitious.  I have been extremely concerned and worried about sharing our good news, as I might "break the streak."  So not only have I not told you guys, nor have I told family...even Matt.

Back in November, at our last appointment, I told/asked Dr. hernandez about starting some herbal supplements.  He agreed, but suggested I try Bcomplex first, as it is cheaper.  I tooled around a few days, until I finally was able to get to the store.  I picked up a cheap bottle of B vitamins, gave them to Jake, thinking nothing of it.  It is from that day, or one day after, that we have yet to see any seizures!

As you can imagine, I am on cloud nine!  Just soaring! My cheeks hurt from smiling so much. 

Sooooo, yesterday I sat in my office and was reliving my excitement with coworkers.  About this time, a student came in speaking of some bird outside my classroom window.  Yeah, yeah, bird, shirmerd....we go about our business and continue chatting away.  Then another teacher I share my room with comes in and is grabbing her camera, as not only is there a bird outside our classroom window.....there is a Hawk.  I instantly get chills and am motionless.  I literally couldn't move.

Finally, when I compose myself, I race two doors down,  sure enough, there, staring into our classroom, perched on the nearest branch towards the window, is the most beautiful, calm, baby hawk.



That hawk, supposedly had been there since I left from school to head the appointment the previous day.  After I taught my lesson for the day, i turned to say goodbye to the sweet bird, and he was gone.

Amazing!

click to here to learn why this is so inspiring:
The Hawk


God is good.

"He is a wise man who does not grieve for the things which he has not, but rejoices for those which he has." - Epictetus

Christmas come and gone...

So another Christmas is in the books.  It's very cliche I know, but time is sure flying by.  I am trying to suck up every possible moment with these kids, as I feel like we have lost almost 2 years of our life to the damn beast.  Time spent worrying about damage from seizures, waiting for the next seizure, and wasted in ers, clinics, doctor's offices and ambulances.  Time I would have much rather spent cuddling, playing, swimming, reading, and just watching them.  Honestly, even if if was time spent being annoyed, irritated, and overwhelmed, I would have taken it, if not caused by this monster, we call Doose

I had planned to really get caught up on blogging, as I have had two full weeks off from work.  I envisioned waking up, watching cartoons with the twerps, while sipping coffee in my pj's.  However, none of this happened, including the obvious...no blogging.

luckily...I have NOTHING exciting to report...not ANYTHING at all, if you catch my drift.  If you have read previous blogs you likely know what I am saying here, without saying it!:-)

Since I don't have many words, except reflections of Christmas' past (2009), (2008), I simply added some pictures that tell our bits and pieces of our break to you.



On our way to church





the twerps





the twerps AFTER screaming SANTA at the top of their lungs





brothers enjoying Santa's loot





Santa dropped a puppy down the chimney for Addison- "Mia" Hamm





GUNS!! one of his all time favorites gifts







tools! another hit!





 I am so happy to report a very uneventful Christmas this year.  Three kids, two dogs and a house full of family and friends is soooo uberly uneventful compared to helmets, seizures, diastat, bumps, bruises and blood.  For this we are thankful!  Praying for many more uneventful days.

Christmas is glorious enough, but made even more so as we remember and reflect on Christmas' past.

We are blessed!

Happy new year to you and yours!

“I asked God for strength that I might achieve. I was made weak that I might learn humbly to obey. I asked for health that I might do greater things. I was given infirmity that I might do better things. I asked for riches that I might be happy. I was given poverty that I might be wise. I asked for power that I might have the praise of men. I was given weakness that I might feel the need of God. I asked for all things that I might enjoy life. I was given life that I might enjoy all things. I got nothing that I asked for, but everything I hoped for. Almost despite myself, my unspoken prayers were answered. I am, among all men, most richly blessed.”