Tuesday, April 29, 2008

Let the Games Begin!

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.

Friday, April 18, 2008

Spring Break

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!!!!!!!!!!!!!!!!!!!!!!

Saturday, April 12, 2008

Sneak Attack

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

Friday, April 4, 2008

The Miracle of the Moment

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......

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.