Tuesday, November 3, 2009

Embarrassed to say it ...



November is Epilepsy Awareness Month and .. I didn't even know it.Why is that?Seizures were such a huge and devastating part of our life at one time.Actually,Zoey's life.It was,after all, her little brain that was being jostled relentlessly.We all however, lived and breathed Zoey's seizures.Or rather we mostly held our breath.Our lives were consumed with counting seizures and watching for seizures.The little guys even would yell out,"seizure",when she was having a cluster.How sad is that?Our lives were once dictated by guessing,"Do we go up on dosage?Do we go down on dosage?Is the dosage EVEN working?Was that one or wasn't that one?"We,or rather Zoey was a veteran at EEG's.Too many to count.Sleep ones.Waking ones.Over night ones.Video ones.You name it,she had it and she was not even one.We were regulars in yet another area of CHLA.We knew peoples names and everybody knew Zoey.Not the attention we were really seeking.And you think that the 4th floor cancer floor is sad,you should spend the day in a neurology clinic.Devastating.Truly devastating.I shared with someone awhile back,that Zoey's seizure time was a truly dark,dark time.In many ways darker then the leukemia days.At least cancer has some set in stone protocols for cure in place.Not true for Epilepsy.It is often a crap shoot.The doctors are guessing just as much as we are and nothing is more discouraging as to see your neurologist face looking defeated because he is not particularly optimistic on the next medication choice.Seizures came out of the clear blue for Zoey.One day a subtle head drop and the next week an
EEG report that read like a really, really bad horror movie script.Zoey's type of seizure disorder,Infantile Spasms,is referred to as a catastrophic form of Epilepsy.Not what parents wants to hear.It is often very difficult to bring under control and most often leaves in it's wake, severe developmental delays.Well,Down syndrome already held that for Zoey,so to have another zinger thrown in there,seemed a bit unfair.We watched our once smiley little girl,leave us.Leave us like,no body was home,leave us.No smiles.No expressions what so ever.She stopped rolling.She stopped eating well.She just STOPPED.Our journey from and through Infantile Spasms was relatively brief,compared to some, but it was still dark and agonizing.In the end,after 2 frontline medication failures,Zoey found her miracle in a drug that little held hope would work.That was a gift.If you were to head back into my archives from March 2007 - June 2007,there is ,some UGLY stuff.In fact this blog began after Zoey was diagnosed in early February 2008 as place for me to sort out and vent my demons.What it morphed into was what you see today.A place of hope.For possibly,some frantic mother,googling Down syndrome/Infantile Spasms and up pops hope.Because that is what happened to me one sad February evening and what I found,was hope in the amazing Sam.To this day I go to his site and I see Zoey's future.I see in Sam,Slow and Steady Wins the Race,Everything is possible... the impossible just takes a little longer.I see a little boy who is laughing and living and that was the gift and by product,for me, of Epilepsy..Along the way I have "met" the most amazing children and families.There is a core group of us that still stay in contact, over a year and a half later.Of the group,Zoey has found seizure freedom for over a year now,little Hannah,who is Zoey's age,from Georgia,who doesn't have a blog but rather a caringbridge site,is seizure free and has just begun walking,.Dawson was blessed with seizure freedom for almost a year and now is back in the battle and then there is Jude and my little love Reagan, who have battled and battled and battled on their quest to find their miracle cure.There are other loves that I follow as well,Sophie,Bennett,Kendall,Madie,Maddie,and Jackson,who are all on various junctures on their Epilepsy journey's.Lets not forget either, our buddy Jax .On top of his heavy load he also battles daily with seizures.I feel helpless but not hopeless for all of them.They inspire me.Each and everyone of them.So,it's November.Epilepsy Awareness month.Go here or here.Learn more about Epilepsy.The stigma attached and the true lack of funding out there to get these kids to seizure freedom.I say that I don't take Zoey's seizure freedom for granted but do I?Have I become too comfortable and confident that she remains seizure free on a very low dose of medication?Lord I hope not.Zoey has an amazing doctor at UCLA.One,that rumor has it, is retiring.One that has been a source of encouragement and has rejoiced alongside us in Zoey's progress.Zoey has a wild card of a hemispherectomy if her seizure were to return.That is a gift as well.Many children lack options.Many parent have become disillusioned and disappointed with the medical field and often are left wondering,"Does anyone care about my child?"Well I do.And to all my Infantile Spasms families,I'm sorry that I forgot Epilepsy Awareness Month.No excuse.

As I wrote to my friend today,Miss Zoey is 3 for 3 ... September...Childhood Cancer Awareness.October ... Down syndrome Awareness and now November .. Epilepsy Awareness.Zoey sure likes to make sure she is part of the crowd.I really need to tell this girl to be more of a leader rather then a follower!!

21 comments:

Kristy said...

I'm up and can't sleep to to some tornadic environment in my life and where do I find myself to look for inspiration, hope, persepective to get back in gear?? Here at Zoey's place...once again she puts a smile on my face and leads me to keep plowing along. What a blessing Zoey is...thank you again for sharing her smiles!!!

www.bellagiodove.blogspot.com said...

I have just started reading your blog about a month or so ago. you and Zoey are such an inspiration. My daughter Isabella (Bella) also suffered from seizures and is seizure free but I am always so scared of that darkness you describe. Our blog is www.bellagiodove.blogspot.com

stephanie said...

Unbelievable! From where you all were to where you are now. I'm blessed to be able to follow.
Love and kisses to all!!

stephanie said...

P.S... great pictures.

The VW's said...

Love the pictures! Yay Zoey! Make a mess for your Momma!

Seizures are THE WORST!!! Like you said, for many things there are protocols and exact solutions...not the case for seizures! Seizures have probably been the worst thing that I've had to watch Gavin suffer with. You can only sit and watch and as a Mom, this is so hard! You just think, if only I hug him hard enough, then I can stop them from going on and on. I wish it were so easy!

I pray that Zoey can stay seizure free! I pray that all families going through this can be relieved from this nightmare one day! HUGS!!!

Lacey said...

I had no idea it was epilepsy month either. I'll have to look into it. I hate that siezures control our life, and that his started after doctors mistakes.

Tina said...

Those are such cute pictures, Zoey seems to be having a blast, and what better place!!! wow 3 for 3..hard to imagine what you as a family have had to go through, I really feel humbled, at the same time I also realise how lucky I have been but yet do not for a moment take that for granted. Your little Zoey is amazing, just amazing and not to forget totally adorable!!

Googsmom said...

{{{{{HUGS ZOEY}}}}} I just love this kid :)

scrappy quilter said...

I too am blessed to be following your blog. You've been through so much and yet you are always such a blessing to those who read your blog. Hugs..

datri said...

What a journey. Zoey is an inspiration.

A friend of mine's daughter (who has Down syndrome) was recently diagnosed with IS. She was just blogging about the outrageous cost of ACTH ($30k a vial!!). If you have a chance, could you stop by and give her a word of encouragement?

http://quinnscrusaders.blogspot.com/

Team Carter Jay said...

I just found your blog, and I'm so glad that you have shared Zoey's journey. We are new to this "walk of life" and it's good to see where your little one has been and how far she's come. What a blessing!

Dawson said...

What a awesome kid you have. I Love the fact that she has fought and won all these different battles. I personally think that seizure freedom happens to be one of her greatest. So very very proud of her we are.

We go back a long ways and just wanted to say thanks for being there for us.

Please pass on a hug and a kiss to Miss Zoey from us...

Cjengo said...

I love the pic, but yes seizures are terrible. Jude has IS due to his stroke, and we don't know if he will ever grow out of them, or if they will turn grand mal. I always say that seizures are from the devil, and I think they are. They seem to lurk in the shadows because when you feel you have defeated them they find a way to worm their way in again. Thanks for sharing.

Kelly said...

Heather did you know November is also Adoption Awareness Month? Have you seen Kennedy's moms blog lately?....they met Kellsey.

So glad sweet Zoey has overcome all these battles. She is one fierce warrior. Cute photos!!

Bea Braun said...

She is just so adorably cute. What a wonderful and miraculous moment that she is able to get herself right into that bathroom, get a hold of that tissue, and have a blast. Out of those horrible dark days and into the light!

Tish said...

Zoey is a true leader of warriors, and a hero for all that she has overcome. The gift of Zoey's grace is teaching us and leading us on a path of complete and utter inspiration and hope. I am proud to be her student... and her follower. :)

Anna said...

Heather, that is how I met you. Through IS. I didnt even know what blogging was at that time. Im so glad you are sharing. It was through you that I learned of Reeces rainbow and when things didnt work out with our adoption I knew what we were supposed to do. I thank you for being open and vounerable. We celebrate this month because its adoption awareness month. Thank you for being a voice for those that cannot speak or dont have the words. You do it so beautifully.

Kele said...

Zoey is precious in the pictures... love how mischevious she seems to be! Whatever she is, leader or follower... she is loved by many!

Christina said...

Hello there,

I don't know how I ended up stumbling across your blog.......but your family is beautiful. As soon as I saw the word seizures........I had to read more. My daughter has a rare chromosome disorder that causes her to have seizures....so I can definitely relate to that.

Stop by Pooh's Corner sometime.

Christina

Sophie's Story by Elaine said...

Everytime I think about all that Zoey has been through...I am amazed!!! She is such an amazing, precious little girl.

By the way, I can still hear Cali calling my name ;)

Michelle said...

3 for 3 and Zoey has handled it all so gracefully, so beautifully. Not to mention making playing with toliet paper the cutest I've ever seen it! Love you guys so very much!xoxo