Friday, December 3, 2010

"The question is this: Is man an ape or an angel? I am on the side of the angels." ~Benjamin Disraeli



Most of you that find your way here from time to time,were not around during this blogs inception.During the horrific Infantile Spasms days.Days that made fighting leukemia look like a walk in the park.Okay, not actually a walk in the park but seriously,some find this unbelievable but I have said this time and again, our Infantile Spasms days, seemed in many ways, far harder than the cancer days.Leukemia treatment was straight forward.This is the protocol.This is the treatment.Epilepsy is far from straight forward.

Although much of our lives over the past almost 4 years seems as if we have existed in a dream state,or nightmare state,depending on vantage point,it was those days, watching my little love literally disappear from us,her smile stolen away by a silent thief,that seem most surreal.I keep those days close to me for one reason and one reason alone.To remind myself, on days I have become too complacent or too whiny,to acknowledge the beauty that exists today versus the ugliness that was sucking the life out of us,out of our daughter,then.And,every once in a while a reminder comes in another form.Usually one encased in a precious,innocent baby.

Today it was a 6 month old little guy.A weird,what are the chances that would happen,little guy.A connection that appears to be pure coincidence but perhaps instead is God once again being anonymous.An opportunity to dig deep, dredge up those dark days,days in which I once yearned and pleaded to find purpose.Today I found myself proclaiming,ah-ha,here,here perhaps is a sliver of purpose.

With Infantile Spasms,one cannot give that beast,the upper hand.You need to jump on things and jump on things,like,yesterday.When we were entrenched in it all,in the beginning stages, we had no idea what we were up against.We were schooled rather quickly and rather relentlessly and today,when I heard "probable Infantile Spasms",I did not miss a beat.I refused to have any family wait more than a day,heck,more than half a day, before their child got to where they needed to go and in my opinion,that was UCLA.Now,why am I telling you this?Well,I am certainly not trying to toot my own horn but rather,in a day and age where we have become so jaded and bitter towards the health care system and anyone connected with it,I need to tell you of the good.The inherent good that still exists.

Zoey's doctor,Dr.Shields,email was not working.Being the impatient person i can be sometimes,I decided to not wait for a secretary to maybe,and more than likely not,call me back,so instead I went to the top.As in the top of the food chain,Chief of pediatric neurology at UCLA.I penned off an email and do you know,in less than a half hour he had emailed me back,with the most incredible, caring words and set in motion events that will ensure this little guy will have a fighting chance against this catastrophic form of epilepsy.This doctor was actually away at the Annual meeting of the Epilepsy Society.He is one busy guy,to say the least, and he stopped.Stopped what he was doing.Because he cared.Simply unheard of these days.

I learned two things today.One,never underestimate the power within.If you don't try,you'll never know.Two,there are doctors and staff out there,who actually are still in this rat race, to do good and and make a difference.My faith is once again restored and tonight,I go to bed knowing that one little boy and his family,have hope on their side.

24 comments:

Tina said...

Wow!! It feels so good to read that sometimes the world isn't so bad after all and that there are people who genuinely care. The thing about doctors is you never know when they truely care from the heart and if they actually do. Reading this was refreshing and reassuring. So happy that this little boy will be getting the help he needs and no time is going to be wasted.

another mother said...

Heather,

Infantile spasms is indeed one of the most horrific diagnosis a family can receive. It steals your child, while leaving their body behind. It has to be a parent's worst nightmare to wonder if they will ever again see their baby's beautiful smile or hear them laugh (not to mention the horrific 180 it does on any child's development). I understand what you are saying about it being in some ways worse than leukemia, because even through all her treatments we saw pictures of Zoey smiling and fighting. I am thankful that Zoey was not left in that dark world of infantile spasms.

Also, thank you, that you reminded us that there are doctors that still care. Like any profession, I'm sure that there are those who are not in it for the right reasons, but in my experience I have met more caring and concerned doctors than the other way around. I recently had to call an on call pediatrician at a very inconvenient hour, and I started off by apologizing for bothering him. His response was never apologize for being a mother, I'm here to help you no matter what. Thank you for sharing. Have a wonderful weekend.

Stephanie said...

God put you in the right place to help that family and that baby! So glad to have you as a friend, even if we have never met IRL! :) I think every neuro in the U.S. is at that conference, along with some of my good friends who are all Peds Neuro NP's & nurses. They have promised to fill me in if there is anything new and exciting. I'll pass it on.

Hugs to all! Have a wonderful weekend!

Steph and Christopher

The VW's said...

What a wonderful doctor! And, you are a wonderful friend! Hugs!!!

colleen said...

Great work Heather and I am not surprised, you've just figured out how the system works....Hope your friend's child does well with great care at UCLA!

Sweet Pea's Mommy said...

You are an amazing woman!

Lacey said...

Ok, I need to get Jax to UCLA! Seeing the testing they were doing for Emily, stuff thats never been done with Jax, and now this sweet doctor. That is where Jax needs to be!
By the way, I called that kid Thomas, when it was Mathew. Yeah, I'm horrible with names!

Rochelle said...

I love how God spoke to you and you answered the call. You are awesome!

Anna said...

I love how God is using you, and your past. That is how we met.I remember those IS days. Brings tears to my eyes, wondering how our sweet litle Victoria is doing. Sad that the guardians wouldnt listen to me during those long hard days and months. But its what led to us looking for a special little one of our very own. We too are choosing to let our past change our future. Gods plan is so big and beautiful. Heather, you rock!

Kiley said...

Would you happen to have that dr. e-mail still? We have been fighting infantile spasms for 2.5 years with Hunter and have not had a seizure free day yet. We have lost development and our son to this disease. We have tried everything but surgery. Maybe Dr. Shields would have a suggestions for us. We do live far, St. Louis MO. BUt if he/she believes he could help us we would love to go to UCLA.

Kiley said...

Hunter might be able to benefit from this Dr. We have battled Infantile Spasms for 2.5 years, since June 2008. We have tried prayer, medication, ketogenic diet x2, acth, everything our md has to offer except surgery. If you would be interested in talking to him/her about us maybe we could make a trip from st. louis mo. to ucla.

SECRET PEPPER PERSON: said...

I found this kind of responsiveness with the WORLDS leading osteogenesis imperfecta specialists. They are so nice, down to earth, and accessible to us as families of kids with OI. It's wonderful isn't it? And as far as you getting this baby hooked up...this is why I feel at my age that I'm working with special kids in the 0 to 3 population when I should be retired...to get them services quickly! We are kinds of professional navigators for those parents who are unfamiliar with the terrain.

Anonymous said...

Kara filled me in, and I am just sick for this family. I have no idea why things like this happen to kids, and why parents must suffer through their children. I hope and pray for the very best outcome possible - they are lucky to have such a "connected" friend!

Mo

Kiley said...

My e-mail is mckinney_98@hotmail.com

Topamax was the first drug we tried. We only tried it for about 1-2 weeks because it sedated Hunter. Knowing more now (2.5 years later) our first neuro. was making increases too fast for Hunter. He has to increase slowly or he become too tired. Last month we started Zonagran (a sister med to topamax). We are suppose to make another increase monday, but we have not had any imporovement. It is weird, the myoclonic seizures are better, but now he is having tonic/clonic seizures and staring seizures. Our neuro. is great, but I think he is running out of options. We have a Vagus Nerve Stimulator and corpus collosum surgery as our options, neither I am excited about. I would love to talk sometime and if Dr. Shields could help maybe a trip to UCLA is the ticket. We did go to NYC last year in hopes of some help, but again so success. My little angel deserves some so much better, I wish as his mom I could give hime that. Thank you for your kinds words and thoughts.

Kiley said...

Thank you for the message. I am so not good at this blogging thing. I sent a long message and it did not go through, but I would love to talk with you. My e-mail is mckinney_98@hotmail.com

Googsmom said...

Your the greatest!!

Bea Braun said...

Oh Heather I like the way you work!!! I pray that this little guy will have a miraculous outcome.

Anonymous said...

I am not surprised at how quickly the story of this precious little boy spread through the mom community but the fact that the doctor actually responded just as quickly is unbelievable. You obviously knew how special these doctors were or you wouldn't have even tried to contact them on the weekend. The babies chances at a normal life are so much better now and YOU made that happen. Once again proving that Zoey was sent here to earth for a reason and that you were chosen, as her mother, to be her voice. You were the perfect person to be chosen by God for this purpose.
kathleen

Anonymous said...

Great post Heather... Yes we do become jaded & bitter but this lets us know there is hope,love & caring out there in the medical world and beyond.

Bluebelle

Anonymous said...

oops - forgot to mention- Great, great photo of little Miss "Z"
\
Aunt Bluebelle

Melissa M said...

You were in exactly the right place to help this little boy! And it is so nice to hear that there are very important doctors that really do care!

Elizabeth said...

Bravo to you. I have to confess that that surprises me -- not that you'd be so assertive but that THEY would respond so quickly. I am glad for that family and hope that those infantile spasms disappear.

blogzilly said...

Has he started receiving treatment that you know of and if so what was it?

ANewKindOfPerfect said...

I know that UCLA is THE place to be, and I feel comforted every time I think about the testing they've done for Emily and the answers we've gotten.

Then I remember that our "2 month follow-up" couldn't be scheduled until FOUR months later, which is still TWO months away from now .. and Emily is having more and more seizures .... and I want to scream.