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!


Bishop said...

I just wanted to let you know, we are praying for your daughter Ava. Millie, gave us the good news about her progress.... In reading the issues she has faced in her health, I truly beleive this child has a great purpose and I pray for her total recovery! I am believing she will see the fulfillment of God's purpose and plan in her life. God bless you and God keep you all in His mighty power!
Your Family at Faithdome of Fellowship...

labonte4 said...

Thank you so much for praying for, and lifting up our daughter. I am truly overwhelmed by the outpouring of prayer and support we have received by so many.

Millie has been a wonderful support to our family. Ava is doing wonderfully and just got home.

Thank You Everyone! We wouldn't be her without you.

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.