The Losts Posts and Our 360 Degree Experience

I've just posted all my "lost posts". Drafts I started and never finished. Thoughts I wrote down but for some reason..just didn't want to share in this forum.

One of which was a letter I composed to Ava's Neurologist. I never had an opportunity to give him that letter...because only a few short days after that Ava ended up at Hasbro Children's Hospital for one of the most difficult stays we've ever had.....and we've had many. So lucky for me...I just told him face to face.

She was having 300+ szs per day and as soon as they saw her in the Clinic..she was admitted immediately. Banzel (Rufinamide) proved to be an absolute disaster for her after 8 terrible days. So to make a long story short...she is off the Diacomit (Stripentol) that she had been on for the better part of 2 years and began Zonegran (Zonisamide) along with her regular regimen of Topamax (Topiramate) and Clobazam. We also re-initiated a Modified Atkins diet.

It seems as though...in two years time we've had a complete 360 degree experience and we are now back to square one. Back to the same exact place we were then...at 2 years old.


Desperate.


Since leaving the hospital we've had a week or so honeymoom with this new regimen. Little to no seizure activity....a cruel trick this game plays on us from time to time. I must say.....we've had other honeymooms before.......


6 weeks with ACTH......Like the first honeymoom...just when you start to relax it's time to go back home....and boy did we ever!


6 weeks with Keppra.....the unplanned cruise type....your so happy to get away that you don't even think about going home until it slaps you in the face.


Then a quick little trip with the Ketogenic Diet.......the weekend get away.


but this one.............


this one was like a trip to Paris. Something we saved up for a long time. I don't know when I'll have to go home, but I want to stay as long as I can. I want to see the whole city, every street every corner. I want to memorize everything so I will never forget...in case we never get back. I need to make one more memory, take one more picture so I can remember it forever.......because eventually..........we must go home.

Slowly but surely the seizures are creeping back every day, but it's these little honeymooms that keep me going. Striving to find a way to hold on to a stable medical place for her. Although....I must admit. In the two weeks of this honeymoom a harsh reality came down on me like a ton of bricks.

Giving all of my time and energy into fighting to get her seizure free has given me little time to think about what will happen when she is.

If she ever is.....

These past two weeks have given me a lot of time to think about just that.

Especially when I came across some preschool projects Christian did when he was four. Then the thought crossed my mind.....what if Ava can never read......

When the seizures are at bay, and you have what you think you want...what has been THE most important priority in your life for years...you are now scrambling to pick up the pieces of what is left of your baby. After this "thing" has taken all of the best parts.

The most precious ones.

The ones I wanted.

The ones that were OURS to enjoy and cherish.

The most important ones she needs to live a normal life.

the Epilepsy stole those away from us.....and I'm just soooo mad, but more than that, I'm heart broken down to the very core of my being.

I feel like I'm morning the loss of all the dreams I had for her.....so I can make a place for new dreams.

And this my friends appears to be much harder that simply fighting seizures. That I know how to do.

So to all my friends in a different place in this journey then us. I understand why you are still struggling emotionally. This is so much more that just getting your child free from Epilepsy. Its picking up the pieces.

Dreaming new dreams.


Letting go.....


Holding on.....


and so much more.


Even though we are far from ever being seizure free.....I'm beginning to realize being seizure free might not be as easy as I thought after all.

A Letter

Dear Dr. Neuro:

I know it seems strange, me writing to you and all, but, well, to be honest, every time we talk there are so many other things going on, it never seems like the right time.


I'm desperate. (Like you don't know this already, but I figured I'd spell it out anyway).


I'm loosing my daughter.


What once was a 3-6 month delay has creeped up to 18-24 months. She can't eat, she can't sleep, and she can't go out anywhere. The seizures are destroying her.


I've noticed that the spark of optimism we used to have for her future has dwindled. I can feel it.

Dr. Neuro, I just want you to know how much we love you for Ava's doctor. You have given me the freedom to be more than just her mother, but a decision maker. You've let me make mistakes, and learn from them.


By putting trust in me, you have helped me to trust myself with her.


You've seen her from an innocent 6 month old baby to a 4 year old girl. I know I can be pushy, and well overly agressive sometimes. I can be difficult, I know.


But, she is my baby.



My daughter.



I'm supposed to protect her from all this. Instead I've had to watch her suffer every day. Go through round after round of tests. ER visits , ICU stays, and almost loose her life.

So the reason I'm writing is to ask a favor of you.

I need you to support me in persuing the best possible evaluation for her. I really want to get this MEG test before we intiate the diet again, while she's seizing at her worst. Which is, well, right now.

I need agressive, cutting edge eyes to look at this test. We are risking her life letting her continue to seize like this. Our past visit to the ICU attests to that. The seizures will kill her before any agressive therapy will.

I know your not crazy about surgery. Especially for her. I know you and the others feel her PET and EEGs are non-impressive as far as her potential for benefiting from surgery is concerned. I also understand surgery is not a be all end all "fix" to our problem.

But just the simple fact alone that she been seizing over 100x per day clinically should be reason alone to push the subject for an indepth evaluation. I don't want to wait for her to be completely disabled for anyone to take a risk with her. We're loosing time....and I'm loosing her.

You owe this to her. A chance to live her best life. You owe this to our family. Most importantly you owe this to yourself, whether it's to prove yourself right, or better yet to give peace to a hurting family trying to save their daughter, sister, neice, and friend.