Thursday, February 28, 2008

One Stinky Week

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 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've got to love that rotovirus!).

Friday, February 22, 2008

We're Home

Sorry it took me so long to 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


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"

Saturday, February 16, 2008

Waiting to Exhale

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.

Thursday, February 14, 2008

Valentine's Day 2008

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 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!

Tuesday, February 12, 2008

Day 9 in the PICU

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.

Sunday, February 10, 2008

Our Biggest Obstacle

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..


Friday, February 1, 2008

Here comes the sun

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 ( 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!)

About Ava

Ava Simone LaBonte was born December 1, 2005, a healthy baby. She was a happy, healthy, normal baby until six months old, when we noticed some odd movements, which we thought were exagerated startles. Ava had her first EEG at 6 months, and it was normal. Six weeks following the EEG, Ava began having head drops....and we knew this time, something would show up.

At 8 months old, Ava was diagnosed with Infantile Spasms, a rare form of epilepsy. She was treated immediately with a 4 week course of ACTH. Ava spent 6 weeks "seizure free". All of Ava's MRI's, CT's, and blood tests have been "normal".

On November 20, 2006, Ava had a grand mal seizure which could not be stopped, and she was put in a drug induced coma. We left the hospital on antiepileptic medication, and have been on medication ever since. Ava is currently diagnosed with Generalized Epilepsy.

So far we've tried the following medications: ACTH, Trileptal, Keppra, B-6, Depakote, Carnitor, and currently on the Ketogenic Diet.