Mother's Day!

To my Olivia: Today is Mother's Day, sweet girl, and I am so incredibly lucky to be YOUR mother. I feel that way every single day. I absolutely love it when you give me hugs and pat me on the back while we embrace. I love your sweet little voice, especially when say such words of kindness like "thank you" and "good day!" but extra-specially when you say Mommeeeee! :) I cherish your laugh!! And, you are SO funny. I never knew you would have such a sense of humor so young. You genuinely crack me up. We certainly need our laughs, because it's true, sometimes our days are pretty tough. But, you are tougher; stronger than anyone I've ever known. You have shown me what real strength is. You are teaching me what it means to persevere. 

My dear, sweet Olivia, to be your mother and get to love and guide you every day is the greatest gift I have or ever will be given. I cherish every moment up to this point, and I promise to continue to linger in our hugs and in our bouts of the giggles, because all I have is our life.....at this moment.

All my love forever and ever,

Mommy

Sooooo Sleepy

I reeeeeally want to update the blog, but I am SO sleepy!! Let's see if I can at least get out a few points of interest. Olivia managed to weather the higher temps that plagued her last week without having any emergencies or even big seizures at all. This is very, very good news. I am still trying to get a handle on her allergies again, but at least her high temps have come down. 99+ is the highest I have gotten for several days. This is high for her, but it is still better than almost 102.

Ok....that is all I can manage. I require more coffee to keep from constantly yawning.

-H

We began the home health nursing approval process today, which basically consisted of an initial meeting with the nurse case manager from the home health agency. She was very nice, and I really like the company so far. They are also our medical equipment company and have proven themselves to be incredibly efficient. I had to basically arm the nurse with loads of info about Dravet, our daily life, health history, and all that sort of thing. One of the things that was just running through my mind a moment ago (this is many hours later after the appt and, of course, my brain is still churning--ha), was the line of questions she asked me regarding Olivia's seizure frequency. It has most certainly increased and not surprisingly for the condition as it is progressive. But, the thing that struck me was when she asked if there was ever a day she didn't have a seizure. And, without hesitation, I said, "Oh no. She's never had a day without a seizure. Not since about 9:00p Feb 14, 2010."

...............................WOW............................

As the woman reacted and then made her notes. I just sat there quietly realizing the enormity of what I had just said. My precious Olivia has seized every day--EVERY day--for more than the past year. That's a lot. My guess is her average right now is around 100 a day, but I really don't know. They are way too hard to count. I am awaiting her recent EEG results, and that may give me more of a clue, but then again it's only a snapshot of time. So, all I can say for sure is that I know she is having a whole lot more than she used to, and like I told the nurse--Olivia never gets a day off.

I sure do adore my sweet baby girl. I am SO very proud of her. She is the strongest person I know.

COMING SOON: Updated report on development! Olivia has been doing some fun and exciting things in this area that I can't wait to share with you all!

Here's a little update on things: Olivia has been doing pretty well overall. We still ride the daily Dravet roller coaster of course, but we have only had one EMSA call lately and no hospital trips. So, we call that decent. She seems to have finally kicked the last of the winter illnesses only to have been relentlessly attacked by allergies for weeks now. Even allergies lower her seizure threshold, cause her to run a low grade fever and create such nasal congestion that it would impede her emergency medication. Allergies for pete's sake. I THINK I finally have it under control just as of today actually. Today was the first day I realized I hadn't used a tissue on her repeatedly all day long. Her doctor switched her from Zyrtec (once a day) to Allegra (twice a day) and she still is on her nasal spray, Atrovent (twice a day). I offer the details for any other Dravet mommas who might be dealing with the same issues, so they can know what has worked for us.

Olivia has been having increased daily seizures, which for her means pretty much a grab bag of all her seizure types excluding the generalized tonic/clonics (grand mal). So, she has been keeping me extremely busy for....well, gee, I don't really know how long now. I guess this last intense period has been building all year so far really. Of course, truthfully, Olivia has kept me way too busy ever since she was born!

SPEAKING OF!!! Duty calls......Must cut this update short. I will return with more info as soon as I can. Until then, take care!

Purple Power!

Life at this moment is....PURPLE!! Just in time for Purple Day! This Saturday, March 26th, is National/Worldwide Epilepsy Awareness Day, also called Purple Day. People all across the globe will be wearing purple in an effort to spread awareness of EPILEPSY, in all its forms. There are hundreds, at least, of fundraisers (such as raffles, bake sales, jewelry sales, gift basket sales, special discounts with proceeds going toward research funding, just to name a small few), Walks--like 5k for the Cure--, banquets and celebrations, and so much more. What will you be doing on Saturday to honor Olivia and her fellow warriors?? In the very least, will you wear as much purple as you can? And will you tell others WHY? You could even start right now! Olivia is fighting her fight right now. She fights every day. Every minute. Every second.

Life is this moment is, all over the place. The roller coaster of Dravet is literally up and down almost daily. I find myself so guarded against the disappointment and chaos that enjoying the fun, wonderful, positive, even normal moments is growing nearly impossible. I'm sure to give in to that, though, would be to fully give in to bitterness, fear, resentment, pessimism--everything that is the opposite of what Olivia and I need to stay strong against the monster of Dravet. But, how do you "stay strong" when you just aren't anymore? How do you yank yourself up by your bootstraps when they are now threadbare? Where do you go when you are at the end of yourself?

I have no idea.

I've decided to print out information to give therapists and other paraprofessionals regarding Olivia's condition, because frankly I worn out with flapping my jaws about it and feeling like I'm not heard or understood. So, maybe if they read the words of the doctor who discovered the condition, for example, they will become more enlightened. Here is just a tiny portion of what I've been reading the past hour:

"PROGNOSIS AND COMPLICATIONSThe outcome of severe myoclonic epilepsy in infancy is unfavorable. The affected children will persistently be affected with seizures. Partial seizures disappear and myoclonic jerks disappear or attenuate. Convulsive seizures are mainly localized at the end of the night. Fever remains a triggering factor and can still provoke epileptic status. Neurologic abnormalities remain stable. All patients are cognitively impaired (severely in 50%) but without deterioration after the age of 4 years (Guerrini and Dravet 1998). Many also have behavioral disorders, including psychosis. The mortality rate is very high, from 15.9% to 18% (Dravet et al 2002). The cause of death is variable, including drowning, accident, seizure, status epilepticus, infection, and sudden unexpected death." 

--Charlotte Dravet


This isn't new information to me. But, even after a year of living it and after 7 months of knowing what "IT" is, this kind of thing still makes me want to flail myself onto the floor and cry. And CRY. And CRYYYYYYYY.


Sorry to be a downer, but that's where I'm at in this moment.

Overdue Update!

My apologies for not updating sooner. Olivia's surgery went SO very well from beginning to end, the entire process. This is an especially amazing fact considering we had the surgery on the very same day--SAME TIME--as the 2nd-worst blizzard Oklahoma has ever seen. We stayed at the hotel nearby the hospital the night before to shorten the distance to drive (or even walk, I was fully prepared to wrap her in blankets and walk across the highway to the hospital if I had to!) on the treacherous roads. Olivia was having fun the whole time. She thought we were on some kind of adventurous trip. My car was completely blocked in by snow the next morning, but her father made it safely to the hotel in time to pick us up and get to the hospital in plenty of time. One of the most amazing things was her surgeon prayed over her before the surgery, which was a very comforting thing to me. Even though my friends couldn't be there with me in person due to the weather, they were with me digitally by text, email and Facebook!

In general, Olivia is doing so very well right now. She did catch strep throat last week, but it hasn't kept her down for long. She has only had one major seizure lately, and her emergency medication was able to stop it within 10 minutes! That kept us from having to go into the hospital. I did have had EMSA check her over as usual, of course, due to her stopping breathing during the seizure. For those of you not personally familiar with these kinds of seizures, you would be shocked how quickly a person turns blue when they cannot breathe. It is still one of the most terrifying things that happens in our life. And, when doctors or people try to say gobbldeegoop about how seizures just LOOK scary or how they are more scary for the parents, blah-de-blah-blah....oh my, my, my. Yeah, right. Come to my house and say that to my face after you see what I see. She doesn't just look scary like she isn't breathing.....she ISN'T breathing. I have seen so many seasoned medical professionals get nervous and shaky when Olivia goes into distress. If only I had the training and the equipment, I would just do it all myself. Ok, sorry. Rant over. Just went back in mind for a minute there to the beginning of this journey when we heard the standard line about seizures so often from people. I know there are families still hearing that today. We need to educate the public about seizures and epilepsy, because the misinformation in rampant. Hmmmm, I did say rant over, didn't I? :o)

Back to the part where Miss Olivia is doing really well! Her daily seizures have been on a near vacation the past few weeks--Yay!. They come and go just in a random pattern, so we are trying to enjoy the times they GO. :o) We are finally getting some warmer weather, so she has gotten to play outside in the yard a few times. This has made her so happy. She is having an EEG and sleep study done in the next two weeks. I wanted the EEG, so we have a baseline to go by in the event she goes into distress and is thrown into a terrible cycle. That way, if an EEG is done at that time I have something to compare it to. (Her last EEG was a year ago and was "normal") She is having the sleep study to determine whether she is having nocturnal seizure activity or not. This is common for her condition, and she has some concerning behaviors that suggest it, so obviously the test is warranted.

Despite all that she faces that could get her down, my sweet baby girl just laughs and smiles and causes trouble like any silly little toddler. I am SO grateful for that. I am SO grateful for HER!

And, In this moment, I am grateful for friends and loved ones like YOU.
My love to you all,
Hilary





P.S. I wish I could type more, but my hands (and all joints actually) have been just terribly sore lately. As soon as it's better, I promise to keep things more updated!