Ava Simone LaBonte - Her latest and greatest

The Losts Posts and Our 360 Degree Experience

2010-02-15T14:58:00.000-08:00

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

2010-01-15T10:30:00.000-08:00

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.

The Longest Update Ever

2009-11-06T14:28:00.000-08:00

It's been a long time....what can I say. It seems the magnitude of Ava's condition has finally caught up with me.

Thirty pounds later, and a few more wrinkles, I think I'm finally turning the corner, and ready to blog again. Maybe it all started when I got to thinking....and actually letting the thought stick around for awhile....that MAYBE...she will never be rid of this.

That she is now a solid year behind her peers cognitively, and we seem to be widening the gap instead of closing it.

I actually had to look at that. And worst of all........

feel that.

All I just keep thinking is.... how could she have been born so perfect. Five fingers, five toes....quick labor....easy pregnancy. I want to press the rewind button to the first few weeks when nothing was wrong. To go back to the very first EEG we had at 6 months old when they said "it was normal" and hold on to that....... and press the pause button.

Now....she is CLEARLY different. Not only do we all see it. We feel it. A lot more now than ever before.

It's a hard pill to swallow.

So here's the (entire year) update in a nutshell. Since my last post, January of this year, so much has happened.

Firstly, we weaned off the Ketogenic diet this past April after about a year and a half on the diet. It wasn't even really a planned wean. When the though actually crossed my mind...and I let it say for awhile.

MAYBE............

We'll NEVER be seizure free.

Whew....

I hate even spelling that. Thinking that.....Feeling that.

It's that one thought, that sent me into survival mode. Barely getting by. Waiting for the sun to go down and the day to be over so I could dream.

Because a dream is all I had that made me have that feeling again. That one moment in time when you actually exhale.

And say to youself.............

In this very moment.............I'm happy.......things are good.................

Still,

I only exhale in my dreams.

So back to the Keto wean....the weird part, was that even though she was in 2+ Ketosis, her seizure activity was o.k. Not off the wall, like I would have thought. Like I imagined it would be off the diet. Our miracle that stopped the 60+ drop seizures she was having at only 2 years old. That cut down her life threatning seizures to only 1 a year instead of 1 every 3 weeks.

I think we even lost our "frequent flyer" pass in the Hasbro ER.

The wean didn't exactly go as planned. Ava pretty much had weaned herself off the diet by these daily sneaks I couldn't figure out. Anyway......Dr. Neuro was less than pleased, and had wanted to plan this out. A very careful, slow wean, as to not "rock the boat" so to speak. But in typical Ava fashion it was an abrubt, high drama, tons of withdrawals, then..well. Status Quo.

After a few med adjustments and the seizures were still present....but not absolutely out of control..and for the past few months I've been ok with that.

I want her to eat.

Pop Tarts (her favorite), chips, bread, orange juice....all of the things we take for granted every day were things that were forbidded to her...and she was still having seizures...every day.

I had enough. We all had enough. So if we had to watch her have seizures all day...it mine as well be with a pop tart in her hand!!!

I Love You Mommy!

2009-05-04T18:15:00.000-07:00

I Love You Mommy........

Those 4 word I feared I might never hear. Those 4 words that I thought for sure the epilepsy would most certainly steal from me. My heart can only bring me back to when she was 2 years old....hardly talking....still.....not saying her name, and riddled with seizure after seizure with no light at the end of the tunnel.

Falling...

Crying...

Stitches...

and pain.....

for ALL of us.

It's taken time, a lot of hard work, patience, acceptance, and, well, a lot of extra love...but....she said it. And she says it all the time now...............

I Love You.

Is it totally wierd that regardless of the epilepsy (that we are always struggling to get control of) and all the major set backs we've had. I'm proud. Proud of her...for perservering through days of non-stop seizures, migraines, and yucky ketogenic food.

Proud of my other children...for trying to make this work.........

Sacraficing for her......for our family...........

Proud of my husband for providing for our family during these hard times when her medication cost more than our mortgage......

And maybe it's selfish of me to say...but......... proud of me.

For keeping the faith.

Believeing in her.

Believing in God.

and....well......believing in the referigeratior.

The verse I have taped to it.

"Through faith and patience you will inherit the promise". Hebrews 6:1

Maybe you might ask. What is the "promise" ? Well..that's the whole thing. I've had that verse there for almost 2 years now. Some days the promise was t0 get through the day...and other days it was having the grace to use my last nerve to mediate a fight between the other kids and still keep my cool.

Yet, the big picture always lingers. The "end" result. Will Ava be O.K. Will she grow up to be "normal". Will her body ever live without seizures.

That.....I don't know.

But what I do know is each day I look forward to God's promise for me. I look for his mercy and favor in every step I take. Even on the bad days. I look for his peace. ...which some days...IS my promise.

I'm grossly optimistic..even though my odds aren't with me.

Get Ready to Read

2009-01-28T13:43:00.000-08:00

I'm so sorry that it's taken me so long to update the blog. It seems since we started the process to transition Ava out of Early Intervention, and into the school system.....things have been....well...crazy busy!!!

First things first. Our baby girl turned 3 years old December 1st. We are really so proud of her, in every way you can imagine.

Secondly, we received the results of Ava's SCN1A genetic testing, a very important piece of information we had been waiting for. Ava's test came back with what they call a "single variant change in the gene". Basically meaning that it's neither a yes she has Dravet's Syndrome (SMEI) or no she does not. This particular change is what the lab likes to call "not proven to cause epilepsy"...but.....clinically she is a tell tale case of some kind of SCN1A type epilepsy in so many ways. We all actually thought is was going to be a definite yes. So, at this stage, because both Neurologists (both Providence and Boston) believe this is quite possibly the reason why Ava is suffering from uncontrolled seizures. We have yet to do a muscle biopsy to rule out any mitochondrial disorder, but, one thing at a time.

Ava has continued on the Ketogenic Diet, although, her seizure control as of lately, has been poor, and the diet is, once again, is in question as far as its efficacy in treating her myoclonic seizures. Additionally, her Triglycerides are over 900, putting her at increased risk of pancreatitis among other things, she has gained virtually no weight, and she has some vitamin deficiencies which are causing concern to both Neuros. We are all concerned, so a lot has been on the table.

Back in November, we trialed Topamax (it just made her waaay to dopey, so we backed off fairly quickly. We did, however, notice that she did very well at a low dose (25mg per day) in combination with the diet. We attribute that that to her being a bit more on the acidotic side.

To make a long story short, after a few days in a row of continued breakthrough seizures while on the low dose of the Topamax (we've continued the Clobazam for a few months right now), we decided to completely wean the Topamax and begin our planned trial of Vigabatrin.

What a DISASTER!!

Not only did she have some major withdrawal seizures from coming off the Topamax...she developed a mystery rash after about 2 1/2 weeks into our Vigabatrin trial, which caused our Neuro to yank her off it immediately. The Vigabatrin, we believe, aggravated her epilepsy. We've never seen an initial reaction so bad with ANY med we've tried!

The months of December and January have been riddled with respiratory illness, after respiratory illness. Ava has been through three antibiotics, and is still very congested. We will be going to the pediatrician tomorrow to have her checked....again. She just does not even look well.

On New Years Eve....December 31st 2008 Ava had her first grand mal seizure in over a year. It took 30mg of Diastat to break it.

We were soooo devastated. All of us.

Truth be told, after I had awhile to think it over, we've been so vigilant treating her this past year during illness or periods of breakthrough seizures with her Valium and Lorazepam that we must have prevented quite a few major seizures....just by being smarter....and better at reading her. Well......at least that's what I've been telling myself to lessen the pain.

Ava officially started school this month, and we're in week three (although today was a snow day for us). She goes to preschool 5 days a week from 8:05 to 10:45. She has a one on one RN with her at all times to make sure she is safe at school. We really couldn't have asked for a better nurse. She has years of PICU experience, and is completely comfortable taking care of Ava. The school really came through for us in this respect (after a lot of hard work on my end upon our entry into the school).

So as it stands now......after consulting with both our local Pedi. Neurologist, and our Boston Neurologist, they both feel it's time to put the diet to the test and begin a taper. This is no easy task. We will lower it approximately a 1/2 a ratio every two weeks. Which, puts us at about 3+months to fully wean the diet...if that's what we so choose to do. We've all decided that if, at any time during this wean, she begins having falls again, or, her seizure activity is clearly worsening, we will bump the ratio back up...and...essentially...stay on the diet and try to work on the problems we are encountering with her triglycerides, weight gain etc.

We have also re-introduced her Topamax, in hopes we will see some significant change seizure wise. So far, we have seen a minor reduction, but nothing significant.

As it stands right now, we will wait until her respiratory illness clears up, begin the taper of the diet, and, well, just see how it goes. We have no idea how this will turn out, but we just NEED to know if all this work, and suffering (on Ava's part) is worth it. We need to know if it's still helping, or even making a difference.

Round 1

2008-09-29T16:41:00.000-07:00

Today was our "Eligibility Meeting" with the School Department. I've been stressing about our transition out of Early Intervention (where Ava gets her Speech, Physical, and Occupational Therapy) into the school system for months.

My Early Intervention coordinator told me she's never seen ANY mother so prepared. Excuse me as a pat myself on the back.....

:kidding:

I was ready with my arsenal of letters....for ALL her doctors stating why she needs a one on one nurse at all times while at school. I had hand outs on every type of seizure she has, the effect of recurrent epileptic seizures on the brain, web links to video clips of some of Ava's seizure types, and a complete two page list of every single time she's ever been to the hospital. Her complete neuro psych report, letters from the neuro to pedi, a representative from our local epilepsy center, one from our local special education advisory committee, and an advocate from RIPN (Rhode Island Parents Network). All people who spoke up during the meeting, asked questions I missed, and "had my back" at every corner.

I thought I was going to have to give the poor school nurse a brown bag to breath in after we gone done going through some of Ava's recent seizure scenarios.

As it turns out the school had been doing some preparations of their own in anticipation of Ava entering the school to receive special education services. To my surprise (and relief), the head of special education has had every intention of approaching the Superintendent to get Ava her one on one nurse.

My arsenal........was not needed after all.

Actually all the therapists, and the preschool teacher(s) were extremely appreciative to receive all the information about Ava's seizures, and seizure types. I also prepared a hand out for them detailing Ava's strengths, weaknesses, and how she learns best to allow them to get to know her a bit before she arrives. They felt much more at ease feeling educated about what they were dealing with. It felt good.

Even better.....I actually LIKE all the therapists.

Today was a good day.

On top of it all, I FINALLY got approval from my insurance company for our referral to Boston Children's to see the neuro and dietitian. Dr. Neuro called today to review the results of Ava's digitrace EEG. Same old story....Generalized spike and slow wave discharges.............

with an "mentionable" number originating in the left occipital region

Is it actually normal that I was excited? Excited about the fact that FINALLY she might be showing us a focal point? I'm actually hopeful that my daughter might be a candidate for brain surgery.

Lastly, we discussed how things have been lately, and what we're going to do about it. Our seizure control has been so poor as of late, and her myoclonics have begun to cluster regularly, to where she needs her "rescue med" (diastat) to break them. This is new for us. She also had a weird tonic seizure recently, and a month back had another unusual clonic seizure which we had to break with Diastat.

Dr. Neuro wants to wean Clobazam, and start Zonegran. He also wants us to STAY on the diet.

He's approached me about Zonegran numerous times. I just don't want to compromise her cognition or language skills (a side effect of Zonegran). But, at this point, her seizures are compromising them, so it's a catch 22. Zonegran and the Ketogenic Diet aren't exactly friends. She'd be at an extremely high risk for kidney stones, among other things.

Tonight I feel good that I was a voice for Ava today, who's speech they deem "unintelligable" .

I love this kid

2008-09-23T04:56:00.000-07:00

I clicked on my blog link this morning, and this picture of Ava (goofing off during a wedding) popped up....and made me laugh! Especially considering what I'm about to post. Even Madison and Christian can't help but laugh at her sometimes, because she really is, such a tool!

Currently she's obsessed with the word "shut up". Mind you, she refuses to say her name. She refers to herself as "ME". Everyone in the family knows where she learned the dreaded phrase......listening to her beloved brother and sister in the car! Now, she blurts it out to ANYONE who is making eye contact with her! For instance, we were out to dinner Sunday night and a nice, sweet old gentlemen came up to our car (I was pulled around front to pick up the others) and stuck his head in the window to talk to Ava. Before the old feller could even get a word out Ava screams "SHUT UP, SHUT UP, SHUT UP". Now, mind you, sometimes I can get away with certain things because her language isn't always crystal clear....but....this time...there was no mistake.

If I could have crouched underneath the steering wheel, I would have! Of course, I apologized up and down, and thank God, he didn't seem offended. I'm sure her Digitrace EEG, wires coming out her head look helped with the sympathy vote.

So we've all decided to just ignore her when she says "the word". Anytime we've tried to correct her, she says it even more, even louder, and pretty much....all day!

So if any of you are in Rhode Island, walking to your car, or in the grocery store, reading off your list or talking to a friend, and you hear my little angels voice in your ear.....telling you to "shut up" just keep on walkin' *LOL*.

Don't take it personally, I give it another 2 weeks and it will be history!

Three

2008-09-18T18:39:00.000-07:00

I can't Believe I'm participating in this!!!! But I've been Tagged...so for the sake of good sportsmanship, here it goes:)

Three Joys

my faith - without this....I would be nothing.

laughter - laughing has always been such a big part of my life....thanks to my mother. I LOVE practical jokes and am a total prankster (when I have time). I have a quirky sense of humor, and I'm KNOWN for laughing at inappropriate times (yes...I'm a am a former childhood church laugher). In fact, NOBODY ever wants to sit next to me at church to this day, because THEY start laughing...when I'm being totally serious (especially these days *LOL*).

my family - I really just love down time with my family, especially the kids. Those random days where we're all hanging out or playing, are totally priceless. It's just....what life's all about. What did I ever do that was important before I had children!! I also look forward to those lazy days with the cousins and parents just laughing and chilling out.

Making Memories................

Three Fears

Absolutely, hands down, number one fear

Not fulfilling my purpose in this life

**no explanation necessary**

failure - of any kind. This fear has held me back from many, many missed opportunities, but taught me some invaluable lessons in life.

making mistakes as a mother - the most important thing I've ever done with my life is creating (with some help...) three lives. Three unique, beautiful human beings. I know I can never be perfect, and mistakes will be made.....but I want all my children to be genuinely good, caring, intelligent, successful human beings. I want them to grow up feeling loved and safe, treated equally, and fully equipped with all the tools they will ever need to make a valuable contribution to this world.

Three Obsessions

Coffee...Coffee...Coffee.... I've tried to give it up three times...

a really good glass of red wine! .....nothing else needs to be said!

keeping it real - anyone who knows me knows this already. I'm a stickler on this subject. I absolutely cringe around people who constantly put up a front. I'm as real as they come.

Three Interesting Facts

I have a motorcycle and LOVE to ride (especially with the kids).

I'm terrified of horror movies, and can't REMEMBER the last time I watched one. (I want to say high school!)

I 've been to Africa...three times!

Words of Wisdom

2008-09-16T17:07:00.000-07:00

This one experience I had this past February keeps resonating in my mind......and has been for months. It comes to my mind most often when I'm going through a hard time. Whether it be Ava struggling physically, or me struggling emotionally to wrap my heart and mind around what has....and is.....happening to every person in this family because of Ava's disability. When I'm struggling to try and accept what her future may.....or may not hold.

When I'm feeling sorry for myself..........because NOBODY could possibly understand what we go through. The sleepless nights, the YEARS of no sleep.

The crying.

in my car.......on the phone to my husband......and as I lay down to sleep......with my 2 year old next to me because she can't sleep alone......because she might die in her sleep.....from a prolonged seizure.

The guilt....that I'm not doing enough.....that I haven't done EVERYTHING THAT COULD POSSIBLY BE DONE for my daughter, to help her live a normal life. That I'm not smart enough to understand all the in depth medical terminology tossed around me on a daily basis.

God....why couldn't you have picked a Harvard Grad. to take on this job *LOL*

Nobody mentions.......the guilt.

So I've gotten totally off track from the story I wanted to tell so here it goes:)

: and how cool would it be if the people involved in this story actually read this and freak out thinking how such a thoughtless statement.....affected someone else right down to their core:

When Ava was in the Pediatric Intensive Care Unit this past February with Flu/Pneumonia (caused by aspirating due to a 45 minute status seizure), then a case of life threatning sepsis, we ran into another family in the ICU lounge. Their son was in critical condition after suffering a bowel obstruction, and emergency surgery. Their son had Cystic Fibrosis.

We had seen each other for over two weeks...here and there....and we shared bits of information with one another while we were passing through. On our last day in PICU, after 21 days in Intensive Care, I ran into them that morning.

We exchanged e-mails (of course, I lost the teeny, tiny, piece of paper I shoved in my bag) so I was never able to contact them, although maybe they still have my e-mail:) We got to talking about friends and family, and I said "I struggle so much because nobody in my life REALLY understands what we are going through, and how hard this is....day in and day out".

He turned to me and said....so simply "I would never want any of my friends or family to ever understand what this life is like. I would never wish them to even live one day like this."

It just hit me like a brick.

This man, as his son was fighting for his life, still, never coveted the one thing I can never get off my mind. The reason I'd just rather walk around angry and bitter, because nobody understands. Whatever they say, do, or don't do (my major complaint) is just always wrong. All wrong.

So when I get in this mode, my heart takes me back to the PICU lounge. Over, and over again. Until one day..I'll finally just get it.

It will be one of those moments that I get an overwhelming peace, and know in my heart.....I can just let this go.

By the way......how is Ava doing???

2008-09-15T18:46:00.001-07:00

You don't know how many times I hear that question. From acquaintances, friends, even people that don't even know us very well. I wonder at times if anyone REALLY wants to know the answer.

Both Matt and I have found that many who ask.......don't really want to hear the answer if it's anything other than "great, wonderful, better than EVER"

So warning to all....if your one of those people......... don't read any further. This won't be an easy read & won't have you feeling all warm and fuzzy at the end.

People just ask to be nice, as a polite gesture.....and I get that.....I'm guilty of it myself in my "before it happened to me" days. But quite honestly, these days, it really gets the best of me. Don't ask if you don't want to hear the truth. And when I tell you exactly how she is doing....don't cut me off, pretend you have a phone call, or say "awwwww...that's too bad" & go back to living your perfect life and never give us a thought or a prayer. Just don't ask.

Maybe I shouldn't be posting tonight............................

Ava has been having clusters of "new" seizures lately which consist of her eyes deviating upward and blinking constantly. We've had to use her rescue med (Diastat) many times these past few weeks to break these clusters. Strange enough, the myoclonics we've tried so hard to nix, have all but gone (maybe 3 or so a day) We've also noticed some absence seizures rearing. It seems as though ALL her major seizure activity has shifted to sleep time. She's been having horrible myoclonic clusters almost every night. I upped her nighttime Clobazam dose hoping it would help, but nothing.

We've had to rouse her nightly to either give her Diazapam or Lorazepam to take the edge off & help her sleep.

My poor baby. She can't even sleep anymore. The diet, however, is in question.

Again.

It will all come to our 3 day digitrace EEG we will be getting done this Thursday. I'll have a lot to think about next week. So until next week, we'll sit tight. My heart is so heavy tonight. I'm very physically exhausted from the nighttime seizures, but mostly, I'm scared.

Scared of what the EEG might say. Things have shifted seizure wise, and I don't like the way things are going. I'm scared of what is going on inside her brain, and that it could mean Ava may loose all the progress she's made. Yet, even with what I'm seeing on the outside.

I still believe.

I believe that God is in control of this situation. I believe that I can give all this pain, heartache and worry and he will turn it into peace beyond understanding. I believe that one day we will overcome this monster that has stolen our happiness, our sleep, and our precious family time that is all but a distant memory sometimes.

So to those of you who do care, and pray...for real.

We need it. Especially this week and next.

As Good As It Gets????

2008-08-02T05:52:00.000-07:00

Sooooooo....I've been totally slacking with this blog. I can't believe it's been over a month since I've updated. There is so much to tell I don't even know where to start. This is going to be a long one.

Ironic as it is, Ava's been doing wonderfully since a few days before our consultation at Mass General. Go Figure. So, that's about 2 months or so. She's been averaging about 10-20 myoclonics per day, with maybe one or two causing a fall. She's been feeling good, and her speech is continuing to get better every day. Her physical therapist is highly impressed with the progress she's made, and she's almost "up to snuff" with her peers. Our speech is still quite behind.

She really is such a tool!!! Her new obsession is carrying around pocketbooks all day (and night) long. We've all learned to stop searching the house & car for our lost possessions....because their usually....in her purse(s)!

July consisted of : A 24hr EEG study, a complete eye examination, bloodwork for her Genetic Test (SCN1A mutation). lots and lots of meetings with CEDARR, vaccination talk, and lets not forget the phone calls......tons...and tons....of phone calls. We completed our process with the CEDARR program (to help us with Ava's transition out of Early Intervention, and also to get her some respite care, so I can safely leave her with someone that's not US!!). We set up an appointment for a Neuro Psych. evaluation. We had Dr. Neuro write letters, letters, and more letters about why Ava needs a nurse on staff at school whenever she will be there, (and also authorizing her astronomical dose of diastat - rectal Valium (about 3x her normal dose) to break a status epilepcitus episode.

This month, I've clocked in quite a bit of time with phone conversations with our Neuro. About the EEG.......about vaccinations......and most importantly, about.........Is this as good as it gets????

I've actually been feeling great about Ava. She's happy, feeling well physically, and coming along so nicely in every area......but she's still having up to 20 seizures a day with numerous other generalized spikes that we don't see. Dr. Neuro says her seizures are only 1/2 a second long...which wouldn't even add up to 20 seconds per day. But in my mind, a seizures, is a seizure, is a seizure. And none of them are good. Especially for Ava's little brain trying to process information.

The pedi opthomoligist noted a distinct eye droop on the left side. This is something I've insisted on for 2 years. I've brought it up to EVERY neuro we've ever seen......with just the poo poo response of......oh...let me write that down.

Well, write this downs boys....IT IS REAL! Dr. Neuro, upon a quick initial report of the study managed to "slip" and say he saw more on the left side (which may explain the left eye droop she's had for 2 years, and her favoring her right side slightly) but after a full review of the study, he still insists her seizures start equally from both sides and generalize. He's maintained they are coming from deep within the thalamus, although he did say some were originating in the occipital area. Still, the same end result I've heard from every neuro "GENERALIZED EPILEPSY". I'm more confused then ever, and am waiting for the written report to understand it better. Our phone conversation was so loooong and we were dealing with soooo many issues (vaccines in particular), that I'm not sure I ended the call fully understanding exactly what he was saying about the EEG.

Although I did understand one thing.......

Crystal Clear..........

It looks better.........

A LOT better...........

"We're heading in the right direction"............

After all the crying, fighting, stressing, and EVERY twist and turns we've been on with this diet......we're all pleased at how well she's doing despite the few seizures a day we're still seeing.

Although, I'd like to being seeing NONE.

The clobazam has helped her soo much and we're only at 15mg. per day.....(Dr. T says she could go up to as much as 40) and for right now...it's enough. The only side effect we've seen is a bit of sleeplessness, but that's IT. Clobazam is on the list of one of my "good" AED's. Along with Keppra, which gave us 3 SF months around her 1st birthday.

I'm pushing for the 3T MRI. I just NEED it. It will close the door, and put my "left eye" suspicions to rest. Dr. Neuro said if the SCN1A test comes back negative.....he'll set it up. He even said he'll give me a BEAM study, yet he keeps insisting he feels her "answer" will turn up either genetic or some metabolic issue we'll never be able to solve. All 3 neuro's I've consulted have insisted a PET would not yield us any useful information for Ava. But I'm now at the phase that I just need to know, so I can move forward.

As weird as this sounds.......I've always been soooo grateful that, given her initial diagnosis of IS (Infantile Spasms), she is walking, somewhat talking, and happy for the most part.

I thank God every day for pouring his mercy upon our daughter. Most people might wake up in the morning angry, and bitter being dealt a "bad hand", but even as I'm making all her messy Keto meals (while we're still seeing seizures daily), and chasing her around for meds.....I'm grateful.....so very grateful for what we DO have, instead of dwelling on what we don't, or.....may never have. I've moved on from that place, and I hope I've finally come over the hump.

So somewhere in the middle of all this mayhem we managed to escape away with Madison and Christian (and 2 other friends) to Water Country for the day....thanks to Auntie Beth & Uncle Julio. Well I'll admit that it wasn't my first choice of an outing, but it still felt good....having a break from thinking!!!!

The Cancellation List

2008-06-20T05:22:00.000-07:00

Soooo...we've been on "the cancellation list" for a consulation with Dr. Thiele and the nutritionist at the at Massachusetts General Hospital. We are approaching month 6 on the Ketogenic Diet, and our seizure control has slipped out of our hands,.

Before totally giving up on all the diet did for us, we just didn't feel right about taking Ava off it until we had a second set of eyes look at her to see if any changes could be made to help us regain the control we saw in the beginning. It appeared, last week, that "the cancellation list" really translates to the "never going to call you...ever...list"! We were NOT expecting anything to come of our MassGeneral hopes, and we were patiently waiting for our July 29th appointment with Dr. Bergin at Boston Children's Hospital.

Surprisingly we got a call 4:59 Friday afternoon to see if we could make it in Monday. Of course, we jumped at the opportunity. Both Matt and I really liked Dr. Thiele, and their super cool waiting room & blood lab in the next room! We talked a lot about meds, not giving up on the diet, and....the VNS.....gulp.

I had been pondering the possibility of the VNS for a few weeks now. My thoughts were.....why waste a year or longer on drug trials that most likely won't work and dope her up and hamper her ability to think and learn. All though both neuros understand our thinking.....they (our local one and Dr. T) both feel it wouldn't provide the control we are looking for, and think with some adjustments to the diet and playing with the meds, we can be in a better place.

I'm willing to give it a try. I'm still waiting for the nutritionist to give me her recommendations, and see how I can make it work. We're raising her Clobazam a bit, which I'm not too keen on (as it makes her VERY hyper). So that puts us at 20mg per day...it seems like a lot. But it IS helping.

I also found out yesterday that we FINALLY got our insurance approval to get our SCN1A genetic testing. What a long wait! We waited almost 4 weeks for our insurance company to decide whether or not it would be "worth it" for her to get the test done. It really blows me away sometimes. Ava has been suffering having seizures for over 2 years, with no cause determined, what is there to decide on???

So, since it's been so long since I've posted I'll fill everyone in on some family news (yes...there are actually other people in our family other than AVA *LOL*) Christian finished his baseball season with a great last game, and not after puking a few times afterwards because of the heat **that's my boy**! Both kids had end of the year performances at their school, and we are sooo proud of how well both of them did this year in school (despite all our drama around here sometimes).

They found an injured bird in the yard yesterday, and drove me nuts for hours. So, yes, I'll admit that I did put a make shift splint on it's leg (hoping it would fly, fly, away so my 3 kids would STOP touching it) to no avail. So after lots of tears, our neighbor made a little house for it to spend it's last hours in.

Is it wrong that I'm laughing about this right now????

Anyway, the following morning Ava cried for approximately 1 full hour because she wanted to hold the bird (who was out on the deck in the "penthouse suite). After seeing the look on my face, Madison & Christian had a "quickie funeral" for little Tweeter and we called it a day.

On a side note, this past Saturday we ran (or rather...trotted) the Matthew Siravo 5K road race. The kids did a race as well, and really got a kick out of it. So in hopes to redeem myself, a friend and I will be running another 5K race this upcoming Wednesday.

Coffee...Coffee...Coffee....

2008-06-05T18:06:00.000-07:00

So it's no secret that I've really been pretty down the past few weeks. I know, like always, I'll roll out of the gutter and get back to being myself...but right now....I"m just having a really hard time bouncing back.

That being said....I just couldn't resist sharing this with everyone.

Today, after 1 meeting with the school liasion (which didn't exactly go well), 1 speech therapy session, and 1 two hour Early Intervtion playgroup....I was feeling pretty drained, and really needed a pick-me-up. I decided to head to Starbucks (and order a very large iced coffee with lots of sugar!) before going home and finishing the day.

So we're waiting in line, and as I'm telling the barista my order....Ava screams "GET MOMMY'S COFFEE". I just couldn 't stop laughing! I guess it was obvious even to my 2 year old who had been examined and in therapy literally all day....that I was the one who needed something.....RIGHT NOW!!!

As stressful, and heart breaking as things can be sometimes....I sure do love having another little one. She might not be perfect, but at times, I just have that overwhelmeing feeling that she's exactly who she's supposed be. I don't know what the future holds for her, but something tells me.....she'll handle it just fine.

With a little coffee....I might just be o.k. too.

Breaking Records

2008-06-04T07:30:00.000-07:00

I know it's been awhile since I've updated, but I've just been having such a hard time dealing with things.

So let's start with the good news. We've made it passed our dreaded 8 week milestone. We've never made it longer than 8 weeks withough a major status seizure and hospital trip. This week will be 10 weeks...no staus epilepctus.

It's been so hard to see Ava struggling with the drop seizures again, after almost 4 months of "freedom". I've just been so sad to see this happening to her. She just wants to be a "normal" two year old sooo badly, and absolutely HATES when we have to make her take a break from the sun, or physical activity when she's having a bad cluster of seizures. My heart has been very, very heavy these past few weeks.

I'm really having some serious reservations about putting any more time into the diet, as what we are seeing daily is telling us.....it's not working. We've had discussions back and forth. Neuro, me, Matt, neuro again. We weren't able to see the out-of-state (Mass.) Dr. we had our hearts set on, and will have to wait to for our 2nd choice to squeeze us in the end of July.....which right now...seems like forever. I'm just not feeling 100% about terminating the diet until I feel like we've exhausted every possible option with it. I need a good, experienced set of eyes to look at our menus, mealtimes, every little thing we're doing....and see if there is anything different that would help us get better control.

There really isn't any other anti-epileptic medication that is on the table for us right now. All the choices we have left....aren't good ones. Somehow....something just has to give for Ava. The Clobazam seems to help a bit. Especially the first few hours after she takes it. I called neuro yesterday to see if we could add a small afternoon dose, and see where that takes us.

Madison and Christian have been soooo busy with sports, school plays, and end of the year stuff. It's been a lot of running around to baseball games, softball practice, school play rehearsals, performances...etc.

I wish the sun and heat didn't irritate Ava so much, as it makes it really difficult for us to have "fun in the sun" so to speak. We signed the kids up for a 1/2 day camp and 15 field trips over the summer. They are totally psyched to start (after the summer we had last year)! Most of their school friends will be there, and it will give me a few hours to get organized in the morning.

I've been swamped with appointments trying to get Ava ready to transition all her therapies from Early Intervention into the school system (on top of all our regular appointments)! Lots of "seizure" talk....which I've had up to my ears of these past few weeks! I'm soo worried about how she's going to do in school physically. Heat, loud noises, and sunlight are major triggers for her. We're still working out the details, but I can already tell...it's going to be a fight for us to get what she needs to be safe at school next year.

Well off to make some more Ketogenic meals!

Ages and Stages

2008-05-13T04:29:00.000-07:00

Ava's been talking and learning so much these past few weeks. Although her seizures have returned, she's taking it all with stride. She's really been making us laugh so much lately with all her cute little two year old antics.

Yesterday, we decided to restart anti-epileptic medication. It was a very tough decision, but we have to do what's best for not just Ava, but everyone in the family. We will be starting Clobazam next week, and hope it gives us some better control without affecting her learning and language as negatively as some of the other meds.

During our appointment yesterday with our Pedi. Neuro I really saw our situation in a very different light. As I was complaining about the recent seizure activity Neuro reminded me how terrible and unhappy Ava was on Depakote, and her months of no sleep on Keppra, when in the end, she was still having the same amount of seizures.

Quite frankly, I must agree with Neuro, this is the best Ava's felt physically in quite some time (despite the seizures). It really made me realize that the medications were: a) not providing decent control and b) making her feel worse than the seizures. So the fact that she's feeling good for the most part, and able to learn and remember things despite the seizures made for a really tough decision yesterday. I've been so obsessed with the seizures and my ultimate goal to be "seizure free", I never bothered to think about how she might feel. If she could tell us.....would she want to be on medication.......or deal with the seizures and feel "normal".

So in the end, all parties agreed. We must keep trying to work toward giving Ava the best quality of life possible. And right now....that means a low, low dose of meds to give us a shot at better seizure control, and us continuing with the diet.

Because it was so difficult to get and keep our feisty little two year old on the Ketogenic Diet, we all decided that taking her off the diet to test it's effectiveness would be ideal, but just not in the cards for us. I've worked so long and hard to actually get her to eat on a daily basis and not reject the foods, and because she had such wonderful success in the beginning, we're going to stick with it for awhile longer.

We also decided to head to Massachusetts for a consult at Mass General to help us fine tune the diet in any way we can to get better success with some more experienced dietitians.

Last night, after pondering everything that happened during the day, and after a comical phone conversation with a friend I was truly amazed by all the stages (and ages) we've been through with the epilepsy monster.

Let the Games Begin!

2008-04-29T18:14:00.000-07:00

Baseball season is here, and this week is "Game Week". Christian has his first game tomorrow, and we're back in activities mode. Quite honestly, last year, Ava was so sick that the two older kids really didn't get to do as many sports and activities as we usually do. In fact, truth be told, I really wasn't up to facing anyone. All the questions, the "you poor thing" faces....I just couldn't do it. Anyone who knows me well knows that there is one thing I absolutely cannot do.

A poker face.

As much as I've been hemming and hawing about the diet, things are better. Not perfect....but better.

I'm much more comfortable with accepting Ava for who she is, and not trying to pretend things aren't exactly what they are. She is constantly examined by every mother, father, and town resident who knows she's had a seizure disorder. In all truthfulness, I think I'm really starting to be O.K. with it (except for the occasional ignorant comment). It's easy to forget what life was like without a special needs child, and instead of getting royally pissed off by the looking, the questions, and the totally weird comments sometimes, I've really been trying to picture "the old me" in the other persons shoes.

So now that Mom's not a ticking time bomb anymore*LOL* we're all really excited to start the summer. Madison's been working hard on a school play. She's working the tech crew, and absolutely loves it. Madison's not the "I want the spotlight" type, but is definitely the artsy, organized type. So this has suited her perfect. She starts softball in a few weeks herself. This will be her 3rd year, and she itching to get started.

As for Ava, well, she's shaping up to be a very busy little 2 yr. old. Even though we've been seeing quite a few breakthrough seizures, she's talking and learning at lightning speed (go figure). We changed the ratio on her diet (more fats, less prot. & carb), and it's seemed to make a slight difference, but we're still seeing too many breakthroughs. In the next 2 weeks we will be moving her up to a 4:1 ratio.

She's been sleeping beautifully the past 2 months and I'd really hate to start a med & have her go back to being massively irritated and sleepless. On the other hand, I'm ready to do what's best for her....whatever that means. So the next few weeks will be crucial for us.

Spring Break

2008-04-18T05:30:00.000-07:00

The kids have been on vacation all week, and we've all made it through alive, although we do have three days left! The weather has been phenomenal and we've been on lots of bike rides, and clocking in tons of baseball practice. Christian started his coach pitch T-ball & Madison starts softball soon, so we're looking forward to getting back in the swing of things.

Ava has had a roller coaster of good days and bad days over the past two weeks. It's so hard to correlate her bad days with any one thing, as she has been on a sneak-a-thon with food. She's been caught eating crumbs off the rug, and pretty much anything that looks like food. Needless to say, Matt feels it's the best thing that's happened so far as I'm vacuuming like crazy and the counters are always clean. The first thing she does when we go to anyone's house is comb the rug and corners from crumbs.

We decided to change the ratio of her diet from 3:1 to 3.5:1, in hopes we can see a bit more consistency, and better control. We're going to give this a few weeks and see where we're at. We are still completely off all seizure medication, and the goal is to stay that way. She is still doing so well with her speech and she is getting so much stronger. I really think that 2 week bout with the flu/pneumonia, then all the other illnesses that followed really knocked out her physical strength, as she's made so much progress over the past few weeks. She's back to running away, climbing up the swing set, and all her other fav. activities.

So we're still plugging along with the diet and praying we can stay away from meds.

We're looking forward to a seizure free summer!

Say it again.....................

SEIZURE FREE SUMMER!!!!!!!!!!!!!!!!!!!!!!

Sneak Attack

2008-04-12T10:54:00.000-07:00

Ava's been on a total sneak-a-thon with food the past few days! I'll post more later.

The Miracle of the Moment

2008-04-04T07:25:00.000-07:00

Everyone that knows me fairly well knows I'm a big Joel Osteen fan. It's actually become a big joke with most of my friends and family. The prank calls when I'm having a bad day.....my sister putting stickers on the side of our fridge of sayings from one of his mailings (which by the way was addressed to her!...sorry Beth...I've outed you).

When Ava was first admitted into the hospital to start her very first course of treatment with ACTH I read his first book....and.....it really encouraged me and helped us stay focused, and most importantly..positive.

I think one of the reasons I like Joel Osteen so much is that I love bold statements. I always have. I actually landed one my favorite jobs as a Purchasing Agent by bluffing (sorry Joel) on my resume because I just KNEW that job was perfect for me and I just couldn't live with the "what if"...I went for it.

I love dreaming big.....and EXPECTING nothing less than the best. So I'm sure you can imagine this has been a hard sell for the rest of the family, after all we've been through. That being said, even during the worst of times, I've always manged to roll out of the gutter and keep the faith (even if it took a few days....o.k.....weeks).

I still believe that our horrible chain of events in February happened for a reason. I would have never agreed to take Ava off of medication voluntarily. So when I found myself having a conversation with our neurologist about restarting meds, I really had to sit down a think about what my heart was telling me.

After a lot of soul searching (and reading some of my old blog posts), it didn't take me long to decide. There was NO WAY I was giving up this easily after all we've been through. Oh yes, and of course I had to ask myself WWJD (what would Joel Do)??? *LMBO* Thus....another bold statement.

"I don't care if we're syringing butter, making keto muffins until 2 am, or whatever it takes....we're going to see this through. If she can be seizure free on it once, she can do it again. So bring it on. It might not be today or tomorrow, but we will overcome this".

So, the past week Ava has been doing exceptional. A 95% reduction in seizures from where we were the previous weeks (we still see about 3 per day). Her energy is great, and her language has skyrocketed. In the past week she began speaking in full sentences......we are just shell shocked. She stopped rejecting food, and is completely healthy.

Right now we're all just enjoying the miracle of the moment.

Every moment we see her talk, laugh and play. Every moment we can breath easy and feel "normal" again. Most importantly, every moment we see with our physical eyes one of our bold statements becoming a reality......

When is enough...enough?

2008-03-29T16:10:00.000-07:00

When is enough...enough? This is the question I posed to Ava's neuro this past Thursday.

For the past few weeks, we've noticed the seizures slowly creeping back. For the past 4 or so days, they've been back to 30 per day. Her ketones are staying on the higher side, but not at the optimum level we would like to see. In order for us to reach a deeper ketosis, we would have to change the ratio (more fats..less carbs/protein).

Ava has had 4 major illness since the initiation of the Ketogenic Diet. She has had one major hospitalization, and a status seizure brought on by a fever...due to an illness. In our opinion, this diet has done a number on her immune system.

I put in a call to our dietitian last week, as Ava had been rejecting for a few days straight....and what food she was eating...I know, was not even close to being the ratio or calories it should. I'm not exactly sure what I wanted her to tell me. I already know all the stock answers to this problem......try new foods....don't make a big deal of it....start the bicitra again....make sure she gets plenty of fluids....check your mealtimes.....blah..blah..blah...we've been through weeks of rejection before.

What I needed was some MEGA reassurance, before I jumped ship. I explained how desperate I was for ways to help her eat....how upset we all are seeing this many seizures AGAIN....I'm pretty sure I sounded pretty desperate. The seizures are back, she's not eating, we still don't eat in front of her because she cries for our food, so we're ALL in this. Every single person in this house.

She assured me she would make a few calls to some fellow dietitians re: our case, and get back to me.

So long story short......had a major melt down while waiting for the "call back" and left a message for Ava's neuro Thursday morning crying and saying I was going to quit the diet the following day....I just couldn't do it anymore....I'm too discouraged...too tired....too heartbroken. Once again, the Epilepsy had gotten the best of me. I was down for the count.

Our pedi neurologist has been with us since day one. He met Ava when she was only 6 months old....and he's seen us through many, many, hard times, and difficult decisions. He knows my personality so well now, it actually scares me sometimes *LOL* I'm sure he had a pretty good idea of my state of mind, and knew exactly what to say. This is definitely not my first melt down over a failing treatment. We've had many.

So after an hour convo. w/ our neuro, talk of meds, talk of no meds, and lots, and lots of crying and listening to what my heart was telling me..........

I promised the doc we'd give it a full six months....GULP!

I feel good today. I've gotten all those negative feelings and doubts out of my system, and I'm ready to give this my 100%....again *LOL*.

Last but not least....my sister Bethany gave birth to a beautiful (4 wk early!!) baby girl on Wednesday.

Ileana Rose Caro. She is such a beautiful sweet spirited baby, and we all can't get our hands off of her (especially all the germ ridden cousins!)

Status....Epilepticus

2008-03-20T08:47:00.000-07:00

Yesterday was a great day. We only noticed about 3 minor seizures. Ava was in the best of moods, and the only problem was....it was raining outside (and Christian came home heartbroken about a snack sharing incident on the bus). Well, it was nothing a few silly comments from Mommy and a few laughs couldn't solve.

In fact, I even snuck in some much needed exercise time in, and the kids played at the YMCA for awhile. So I was trying to quietly sneak in the shower....and she caught me. The LaBonte shower/bath patrol.....banging on the door with her toys...."mommy..bath...me....".

When I opened the door and took one look at her hair and face I decided she must have looked in the mirror before asking to come in *LOL*. Anyway I was washing her hair and she was squirting water in my face and I noticed a jerk. Then her eyes deviated.....here we go again.... She was actually coherent and talking, so I was hoping it was a partial that would pass in a second or two.

In the matter of two minutes it turned into a full on tonic/clonic seizure. After 20mg's of Diazepam, we had to call the rescue. We're in status, so back to the hospital again.

Madison was circling Ava even though we asked her to go to her room, and she knows the drill. This time....she was very worried. So long story short...seizure broke right before we got to the hospital, 20 minutes total. O2 was great the whole time, no real fever (100.2); we were in and out in 2 hours and home by 11pm. , a good night for the Hasbro ER which was completely packed. I've come to the conclusion that there ARE some benefits to knowing everyone there!

No sooner we walked in the door, Madison threw up in her bed. Now mind you, this is not the first time this has happened. Madison has thrown up a few times on nights when Ava has seizures, and we actually have a pretty decent stock of Pepto for Madison! It's a pretty simple protocol, Ava has seizure, Madison needs Pepto.

So I let Madison take the day off from school today & spend it with me & Ava, and do some pukey laundry, but when I went to turn on the washer this morning....it was broken.

Am I still sleeping...or is this for real?????

So as soon as Ava woke up this morning I gave her the once over....hmmm...she looked a bit red, so I took her temp.....103.7. I was actually relieved, as sick as that sounds. There was a reason for the seizure, she's sick.....AGAIN. I did have them give her Tylenol in the ER, as anything over 100 deg. mixed with a seizure is preventative Tylenol time in our book. I also gave her some Motrin in the early a.m. just in case.

Now it's time to get out of my ratty robe, go pick up my scripts for Ava, wait for the repair man, make some keto meals and get on with the day.

We survived another status.

A Cup of Joe

2008-03-16T17:57:00.001-07:00

So I just had to post this picture of Ava drinking my empty cup of coffee. She cracks us up every morning trying to carry any mug she see's around the house and give it to me saying "here Dear"! She REALLY wants me to have my coffee in the morning....and so does everyone else!

Even though this past week we've had a few set backs, Ava really is talking better than ever. Both her receptive and expressive language have really improved since we started the diet. We're beginning to actually understand many more of her words, and her mood in general has really been great. Since returning from the hospital a few weeks ago, she has really turned into such a playful, spunky little girl.

We have been having so much fun with her lately, and it really feels good to see her doing more laughing than crying.

Our Little Two Year Old

2008-03-12T13:00:00.000-07:00

I haven't posted in awhile, so here's the latest on the LaBonte front.

Ava recovered nicely from our "attack of the rotovirus". Last Tuesday, March 4th was our first "normal day", and things have been somewhat uneventful on the immune system front.

Ava had a stretch of about a week of seizure free days after we were home from the hospital, and slowly....we're seeing them creep back. One here, one there, then two here, three there and so on. They are, however, pretty subtle compared to the ones we were battling before the diet.

So when I see seizures.....I'm just downright MAD. I'm mad that my whole day is focused on doing everything I can to stop the seizures....and their STILL there. I'm also, just so very tired.

This diet pretty much consumes my entire day. Ava eats 6 times per day (three meals and three snacks). Between preparing and weighing all six meals, making sure she eats on time, feeding her most of them (as to not loose any melted better), and writing down all her fluid consumption.....I'm pretty much spent at the end of the day, with nothing left for anyone or anything else.

As crazy as it sounds, sometimes I feel like this whole epilepsy ordeal is just like one of those never ending baseball games or one of those bad reality TV shows that you really don't want to watch, never admit to your friends your hooked on, but just MUST find out what happens every week.

I tell everyone she's doing wonderful, and, of course, the few seizures per day she will have, will be at the worst possible time.....for everyone to see. I'm really considering if they could rename Murphy's Law, to LaBonte's Law!

I found myself actually being frustrated with Ava this week for being so persistent with demanding drinks. The excess fluid is causing the drop in Ketosis which equals seizures. Why can't she just listen! Doesn't she realize she's doing this to herself!

I was actually laughing at myself this morning reflecting on our week. Ava is two years old! Yes, she does have many obstacles, but in many ways she's just a regular two year old....testing me...and trying to flex her muscles. So this is the part where I tell her no more drinks and that's that...she cries for awhile, but we get through it (and it took me all week to figure this out!!!)

I expect so much out of my little girl. She wakes up every morning having to deal with this condition, and still laughs, plays, and tries like hell to just be "one of the guys". I guess she just doesn't realize that on top of having to eat six super disgusting meals per day, completely apply herself during speech and physical therapy, go to bed on time, that she must NOT as for too many drinks!

So here's to you Ava......

from today on.......

we don't expect you to do it all. If you have a few seizures, you have a few seizures.. We are all in this together. We're going to keep you extra busy this week so you won't be drinking out of boredom, and hope we have a better week.

We know your doing the best you can, and we're going to make this work. We're sorry for putting too much pressure on you. You try so hard, and, Ava, we are so proud of you EVERY day.

Here's to a great week..................

And...We're Off

2008-03-03T16:05:00.000-08:00

So it's official. We've been off ALL antiepileptic medication for two days and counting. How it happened, is, in my opinion, pretty comical. So here's whats been happening the past few days:

Ava still has the rotovirus, and we are currently on day 9 of random attacks of "the grip", although today did seem better. We only changed her 4 times last night, and Matt & I were commenting this morning on what a good night it was! (That's when you know things are bad, when your grateful your kid only had diarrhea 4 times in a night!)

Ava had been weaned off all medication except for her nighttime dose of Ativan. Our wean should have been completed 3 days prior to Friday, but quite frankly, I was feeling pretty hesitant to remove it, as she has been so sick and had spiked a fever earlier last week. In our house, fever=seizure=hospital.

So in the interest of full disclosure, I was just too exhausted to even deal with even one single seizure of significance, and things have been going so smoothly seizure wise. Why ruin a good thing?

So Friday night, Matt and I were watching TV in bed with Ava, and Matt nicely reminded me I forgot to give Ava her nighttime Ativan. I had a long day, and was feeling pretty settled in. My response was "Well, looks like tonight is the night....no more meds." We both couldn't stop laughing....guess you just had to be there.

Things are going extremely well with Ava, considering she's had a stomach bug for almost 2 weeks. She has not missed any of her Ketogenic meals, and since our return from the hospital, we've only seen less than 5 myoclonic seizures, and a few absences. Prior to us starting the Ketogenic Diet, Ava was having between 15 -40 drop seizures per day. Random partials and complex partials, and countless absence seizures.

The diet has been a God Send...in every sense of the word.

Ava started physical therapy last week, as now that's she's not falling every 5 minutes, we really would like to see her build up some good muscle strength and start jumping and running again. She's slightly behind her peers, but I really feel once she's on the mend from this bug, things will really take off.

One Stinky Week

2008-02-28T05:30:00.000-08:00

After a wonderful week home from the hospital, Ava began looking "under the weather" on Saturday....and then it started. Somewhere along the line (have no idea when, because we haven't really left the house) she contracted another virus. I have a good suspicion where this came from (A. H.!!!!!) but no solid leads!!!......

Diarrhea. Seven+ times a day, and all through the night. We are now on day 4 with the end nowhere in sight. She's up about 2-3 times per night with cramps and diarrhea, and we've been homeward bound for the past week, as I'm not sure the public can handle it! I took her to the pediatrician today for the once over, and she seems to be staying pretty well hydrated considering.

On Tuesday afternoon I noticed two seizures, the first I've seen in over a week. I immediately took her temperature, and as I suspected, she was febrile (101.5). She hasn't spiked a fever since that day, and I haven't seen any further seizures of note. We have seen a few absence seizures, but have not seen any drop seizures since our return from the hospital.

Yesterday was Christian's 8th birthday. We had his favorite dinner last night, roast beef, carrots, gravy and twice baked potatoes (he wanted to make it EASY for me!!) We're having a little family party for him tomorrow at his cousins house, and he's super excited to get his new bike and all the "good" presents.

Boy, the time really flies. When he went to bed last night, I was telling him about the day he was born, and it really did seem like just yesterday. When I look at how grown up he looks now, and how mature he is getting, it really takes my breath away. I guess there's just something about mother's and son's.....he'll always be my little boy no matter how old he is!

It really does weigh on my heart not being able to spend the quality time with Madison and Christian this past year. Just when we all thought things were settling down.....it all started up again. Such is our life!

All things considered, after ho humming a bit and a few complaints from all of us, we sucked it up, and took it in stride. We've actually had lots of laughs this week, and even though we can't change our circumstances, we can, however, change how we react to them.

Well, it's time to go wash that 3 loads of pretty stinky laundry waiting downstairs (Ava had a busy day....you've got to love that rotovirus!).

We're Home

2008-02-22T15:32:00.000-08:00

Sorry it took me so long to update....so here's our latest. We arrived home from the hospital on Monday, February 18th, after a 15 day stay (13 in intensive care).

Ava's been eating all her meals, and recovering nicely. We've seen no seizures since we came home. So five days seizure free.

I've been trying to sum up this experience we've had, and the only thing that comes to mind is a quote from my one of my favorite novels:

"It was the best of times, it was the worst of times".

Right now, this is just so surreal to us. Before our admission to the hospital, we were fighting to get every meal down, and she was rejecting most of them. We were on a hefty dose of Keppra, and fighting to get that down as well. She was still having seizures, and we were stressed to the max. We wanted to give up. It just seemed too hard. Our daughter was miserable, and so were we, but we kept at it.

For the past 5 days, things have been good. Really good. In less than a week we will be off all anti epileptic medication, a place I never thought we would be.

In the past, I was always too scared to even tell anyone we were seizure free. It always seemed like right as the words came out of my mouth, everything would come tumbling down.

Looking at it in retrospect, it was a test. A test I failed, every time. It took almost loosing her for me to realize that I have to live, walk, eat, and breath......faith.

FAITH............

The one thing...I was sure I had down pat. Since the first moment I heard the words out of the Dr's mouth, deep in my heart, I've always believed that some day.....maybe today, tomorrow, or years from now.....we will overcome this obstacle.

I believed, but never stood up and claimed it, for any of us. I just let my circumstance get the best of me. Fear ruled my life. Fear of the future, mainly. Will my daughter ever be "normal"? Will she ever get married? Will she ever be able to live on her own? And most importantly....

Will she ever really, truly, be happy?

So through this experience, I've come to understand that all of those questions have already been answered. I believe that we were all born to serve a purpose, and as long as we do our part as parents, Ava will walk into hers...whatever it may be. I don't know why she's had to suffer so much in so little time on this earth, but already, she has really touched so many people.

After everything, I feel really, truly grounded, for the first time since this all began. So if we do have a set back, I know we can handle it....the right way.

I learned the hard way (still waiting to meet a person who learns the easy way *LOL*)how to stay at peace during a storm. During the first week of the admission, I was a total basket case of emotions.

Once I got sent home with the flu....I really took that time to seriously reflect on the circumstances, and really have the courage to be true to myself.

I've learned so much through this illness; stuff that might have otherwise taken months or years of little things. The pain sucked.....but we're all better because of it (even Ava)

Until recently, I never truly understood the quote by Freud:

"One day, in retrospect, the years of struggle will strike you as the most beautiful"

Waiting to Exhale

2008-02-16T17:34:00.000-08:00

Today Ava was transferred to the "floor" and out of the PICU. She is breathing nicely, and is on very little oxygen. She actually ate three of her Ketogenic meals today, and I had them feed her meal four via the NG tube...(I must admit that I'm really going to miss the convenience of that when they take it out).

Ava stood up independently today, and was quite talkative when her brother and sister showed up for a visit.

When I think of where we were at this time last week......and where we are today.......I'm just completely amazed. There are truly so many families suffering there in the PICU. The sounds of mothers crying all though the night, and buzzers constantly going off. It's just not a place I want to be again any time soon.

I am truly humbled, in every sense of the word. In all honesty, my heart was breaking for all of the other families that were "new" to the hospital, and really having a rough go of things. After all, it's an old shoe for us. Although, by far, this has been the most difficult hospital stay we've ever had.

We could have lost our baby..........but we didn't.

I completely attribute her speedy recovery to each and every person who prayed for Ava during this time, and to my mother, who instilled a firm foundation of faith into my heart (and of course to the wonderful PICU doctors and nurses at Hasbro Children's Hospital).

We're hoping Ava will be home tomorrow, after almost a full 14 days in the hospital (13 in the ICU).

So we're just sitting tight, and waiting to exhale. We can't wait for you to be be home, Ava.

Valentine's Day 2008

2008-02-14T10:23:00.000-08:00

Today is a very special day for all of us.

I spent this afternoon with Madison having a special lunch at her school. We spent last night painting her nails and picking out the perfect Valentines outfit (even though she changed in the morning)! I walked in the door with flowers and her favorite lunch.

When she saw me....her face lit up. I actually though SHE might cry. Although none of the other parents brought anything other than lunch, I wanted her to know how special she is to us, and we wanted her to feel important. So, mission accomplished. She took the flowers back to her class (although I did explain that they would probably die without being in water) she didn't care. I hope she looks at them all day at school and knows how much we love her, and what an important part of our family she is.

Now back to hospital news. Tuesday night was a long night of Ava waking up and literally choking on her tube (they lowered all her sedation to give her the best chance of breathing independently in the morning). Wednesday morning was when we had planned to remove the breathing tube for the second time. It was one of the worst feelings of this whole experience to see tears coming down her face, and not being able to fix it, especially when she was seeing my face (probably wondering what the hell I was doing just standing there!!!!)

So Wednesday morning came, and I had spent the night preparing myself, and trying to stay at peace.

I swear it was almost like the moment that she took her very first breath, and we were all anxiously waiting for her to cry....so we would know everything was o.k. Well she didn't exactly cry this time, her throat was much to sore, but she began breathing again like a champ. This was one of those moments that will be etched in my mind for the rest of my life. To see my daughter take those first few breaths, there really are just no words. Even the doctors, nurses and respiratory therapists were cheering her on. It was one of those moments.

She is still very, very weak. She has her NG (nasal gastric) tube in to keep her fed, as she is much to weak to begin her regular diet. Actually, this is the easiest we've had it on the Ketogenic Diet so far!!!! I came home yesterday after two longs days and nights, to start preparing some of her meals for when she is ready.

She hasn't been talking much, and I started to panic...that maybe we've lost all the wonderful language progress she had made in the past weeks. She was putting three words together, and really taking off with her language.

But once again, I had to make a choice about how I'm going to handle this. Fear, panic, and sadness, my usual reactions just aren't an option. I don't want her to even FEEL a vibe of disappointment or pressure, I just want her to feel safe, loved, and completely at peace.

If she needs time......we've got time!

The doc's feel she's experiencing some mild withdrawals from all the heavy meds she'd been on for the past week to keep her sedated. Her neurologist took her off her only seizure medication (Keppra) due to her extremely serious condition last week, as she was covered seizure wise by all the other meds they were giving her for sedation.

So right now the only medication she is on is Ativan 3x per day. Based on how her recovery goes, we may not restart the Keppra, as the neuro feels it was not helping her with the seizures (the drops) that we were controlling so nicely with the diet.

It will really just be one day at a time, if she needs it back...we'll give it....if not....praise God!

Day 9 in the PICU

2008-02-12T16:35:00.000-08:00

Well, we've rounded the corner with the influenza, and the sepsis has cleared up nicely, thank God. On Friday, things were at their worst. Ava was collecting fluid all over her body, and was almost twice her size. I was home extremely ill with the flu and her a.m. x-ray showed a "shadow" around her heart, which prompted a visit from the cardiologist and an echo cardiogram (which turned out fine). She also got a visit from her friend Ms. Millie who prayed for her that day, and really helped to turn things around.

Yesterday morning they attempted to extubate Ava (remove her breathing tube) and her esophagus became irritated and enlarged, so it just wasn't going to work. Her left lung collapsed, and she was re-intubated. This was extremely hard for Matt to see.

The attending later told me that when she saw Matt sobbing over Ava after it was over, that it absolutely broke her heart (and she definitely didn't seem like a tender hearted woman *LOL*)

Matt had been stuck in the hospital for four days straight, so I came right away (my 5 days of being contagious were finally up!!)

Soooo....I'm sitting here in awe of so many things.....

The Power of God

My precious baby girl. Her strength and endurance never cease to amaze me. I've never been more proud of her.

My husband ....for staying strong during the worst of this storm (and trying to lie to me about her condition *LOL*, when he knew I was calling the doctors at all hours.

Millie Bonilla for flying in from Florida to pray for and lift up our daughter.

The outpouring of prayer, love and generosity by so many people that I can never repay.

Our wonderful neurologist, for being more than a doctor, but a friend and a confidant. We love you Dr. G.

My family and friends for taking my frantic phone calls and for praying and crying with me.

We still have a lot of recovery ahead, and the next few days are going to be hard for Ava, so please continue to keep her in your prayers.

Thank you everyone. No words can express all the gratitude we feel toward each and every person who has been there for us, in person, in prayer, and in thought.

Our Biggest Obstacle

2008-02-10T10:12:00.000-08:00

As most of you know, Ava has been in the Pediatric Intensive Care Unit (PICU) at Hasbro Children's Hospital for one week today. On Saturday, February 2nd, she had a major seizure which we were able to control at home. She began spiking fevers all day on Sunday, which had us giving Tylenol and Motrin round the clock. She had another major seizure Sunday night, which we couldn't break, and we arrived at the hospital via rescue around 2 am. The oxygen level in her blood was lingering around 77 in the rescue (very scary).

She stopped breathing several times in the trauma room. She was moved to the PICU where they told us she tested positive for Influenza. On Wednesday she developed pneumonia, and Thursday night she was intubated, and began showing signs of sepsis. Matt and I had been there together at first, and he had went home to be with Madison and Christian and get some rest while all this went down.

Thursday morning, after a record 5 nights of no sleep, I went home and began feeling extremely ill myself, and after a quick visit to the Dr., tested positive for Influenza.

So......I'm here at home, praying for my baby and trying to get well.

Today, she is breathing over her vent, has had no further seizures (other than the one we were admitted for), and the sepsis seems to be clearing up, by the grace of God.

There is so much more to the story, and a million things that have happened, but I'm still really exhausted. Here is the letter I gave Matt to read to Ava from her mommy:

February 9th, 2008

Dear Ava,

From the first moment I laid eyes on you, I knew you would be such a blessing to our family.

I love you more than I can say with words, and my heart is breaking for you, my precious baby.

Christian misses you so much, and wants you home so badly. Madison loves you more than she shows. This is so very hard for her to see you hurting, Ava.

Ava, God has put his blessing upon you, and we know, that with him, all things are possible. Our faith goes beyond what we are seeing on the outside.

Ava, I am sooo proud to be your mother. You always have stood up to your obstacles and are always so brave in the most difficult situations.

Ava, I have begged to take your pain and suffering from you. I would give my life for you to stop suffering, but that's not what God has in our plans, and we have to trust that his plans for us are of good.

Ava, we will speak to your mountains and take this illness and cast it to the sea. We are speaking only life and health over you. God's ways are higher and better that our ways, and we commit you whole heartily to him. We know Jesus has already overcome this illness for you.

I refuse to be scared any more. After all, God has not given us a spirit of fear, but of power, love and sound mind.

From the first moment you were diagnosed with Epilepsy, I knew in my heart you would overcome.

Ava, I believe.

Ava, you are my sunshine on the darkest day. Our family just doesn't work without you here, so please get well soon.

Love you..

Mommy

Here comes the sun

2008-02-01T16:46:00.000-08:00

Sooo.....this past week has been a hard one. Ava started giving us a hard time with accepting the ketogenic food (guess we can't blame her). She pretty much refused food all together. This really took us by surprise, as she was doing so well with eating on schedule (every 3 1/2 hrs) for the first week home; we were totally blindsided.

That seems to be the way anything epilepsy related goes....highs, lows, happy , sad, happy again....and so on). You just never know what each day will bring.

We were out of our minds trying to make new recipes all week to keep her eating and on track. She got pretty lethargic and very acidotic as well, a repeat of our hospital admission. She held out for about 3 days (that's my girl)....but we finally found a few things she is willing to eat, thanks to my online Ketogenic Group. Both Matt & I spend quite a few days going to different stores looking for the ingredients we needed. I guess tofu noodles aren't a big seller in our town *LOL*

Friday, she finally began eating again. You've got to love those buttered up tofu noodles and pork rinds (our new potato chips)!!!!

All in all it was a very difficult week for all of us. There were so many times that we all just wanted to give up. Ava was so unhappy, sad, and downright sick. We all just wanted to go get her a bag of munchkins and a juice box to put her out of her misery.....but.....we love her too much give up on the only thing that's keeping her seizures away. So we all picked ourselves up by the bootstraps and tried like hell to make this work.

Ironically, the weather here in RI has been pretty gray for the past few days, but when we woke up this morning...the sun was finally shining.

On a side note, Matt & I attended the Snow Angel Ball this past Saturday hosted by the Matthew Siravo Memorial Foundation ( http://www.mattyfund.org/). All the proceeds for the event went to Brown University for epilepsy research. Both Deb Siravo and Richard Siravo have been a great help to our family, so we were glad to support the foundation in any way possible (and it gave us an excuse to actually get dressed nice!)

"I think we're cured"

2008-01-25T15:00:00.000-08:00

Is exactly what I said to Ava's neurologist jokingly yesterday, as things have been going so well seizure wise since we started the diet. No sooner the words came out of my mouth, Ava had her first fall on in over a week. My heart sank. Even after all we've been through, knowing full well that there was a very good possibility this could and would happen.....my heart was broken for my daughter as I watched her cry harder than she's cried during a fall in a long time (it happened at her playgroup), and she didn't even get hurt!

I knew that I had to make a choice. How was this going to affect me. I"m not usually a corny person, but I've always loved the part in the movie Shawshank Redemption when one of the characters makes a life changing decision and says "Either get busy living, or get busy dying", and I often relate that to our situation. We can't spend ever day waiting for Ava to be "cured" or for everything to be perfect, or even semi-normal. Shit happens. Especially when things are going well. I think we're all ready to start being happy no matter what life throws at us. We're tired of waiting....and so is Ava. We want her to look at our faces and see peace, faith, and an undying tenacity to make her life better, not sadness, defeat, and disappointment.

She had her follow up appointment with the dietitian today and she lost a pound and a half. We increased her calories, and limited her fluid intake. So we'll see how next week goes.

We have so much to be thankful for.

"Faith is the substance of things hoped for, the evidence of things not seen." - Hebrews 11:1

So Far So Good

2008-01-21T15:24:00.000-08:00

Well, we're day 5 into the diet and things are going pretty good. We noticed about 5 or so eye rolls this morning, but no falls. She had tons to drink during the night...so we're going to cut back on her drinks tonight to see if all that extra fluid affected her seizure control.

Poppie came over for dinner last night, and couldn't believe how nice it was to not be constantly worrying about Ava falling. We've been letting her walk up and down the stairs and not stressing about her going into the bedrooms by herself.

I usually hesitate saying things like this after all we've been through.....but I really feel like we have our lives back!!! Ava was having anywhere from 15 to 40 falls per day before the diet. She even had a pretty nasty partial our first night in the hospital. We're all just in total awe of the extreme change in seizure control we've seen in less than a week, even with a few minor ones popping in.

She hasn't fallen one time since we left the hospital (that was seizure related)...although she has had no problem tripping over her toys. She did, however go out of her way to pick an old french fry out of a crevis in our car and gobble it down before my arms even moved!

Thank you to everyone who was praying for us, and to everyone who encouraged us.

It's just one day at a time.

We're Home!!

2008-01-18T17:39:00.000-08:00

We're home!!!! After five long days...we're finally home! After all our hesitation about starting the diet at Hasbro in Providence....it all worked out. Ava spent the first two days hypoglycemic and went in ketosis so quickly she became pretty acidocic, but with a few cc's of apple juice and some meds to control the acidosis...we were in business. She completely refused any food or fluid for day 2 and 3...and we were really beginning to think this might not work.

After clocking in some serious time in the chapel *LOL* and some serious patience (and a visit from her brother and sister) she finally ate. She threw up the food immediately....but it began her eating, and we've been on track ever since.

I'm definitely too tired to write anymore...but here's a few pics.

As much as we thought we were ready....it was a lot harder than we thought.

The Keto Diet...here we come

2008-01-12T10:16:00.000-08:00

It's now less than 48 hrs. before Ava will be admitted to Hasbro Children's Hospital to start the Ketogenic Diet for her seizures. Ava has anywhere from 10 to 40 "mini" seizures per day. They last about 3 seconds, and she falls forward quite often because of these seizures.

All this time I really thought I was ready for another hospital admission, but I think we all forgot how stressful a hospital stay is. I guess there is just no way to prepare...just jump in head first.