Wednesday, January 17, 2018

So...Ava turned 9 in June. Where has the time gone? Life has been pretty uneventful with her. She has been tube free for about 5 ½  years. She a kid...and has had no long term affects from her difficult baby-hood. She's in 4th grade and is a fun, happy, well-adjusted kid. She has lots of friends and it's hard not to fall in love with her. She's smart, athletic and artistic...she's the whole package. She plays tennis and has been learning how to play the flute and piccolo. She's run 150 miles so far for the year in her school's running club and has a 300 mile goal by the end of the year. She loves Harry Potter, and it's not surprising to see her reading The Hobbit and Harry Potter at the same time.

She thinks the poop emoji is pretty cool....

She decided to have pink and purple hair....

She wants a 4th earring but decided to wait until middle school...

She has fun playing golf....

Zoe is also doing great and in 7th grade. She is proving to be quite the artist. She LOVES music and has her earbuds in at almost all times...she's also finding her beautiful voice in singing class. She plays volleyball, is enjoying running in PE, and has started lifting weights with her dad at the gym. She's turning into a true teen...wearing make-up and endlessly on her phone. She finally broke us down and we got a dog. She's the "family dog", but it's pretty obvious that they're best buddies. friends. :)

Her other favorite dog.

Quite the artist.

On the brink of a teenager....

And, yes, we still go to Disneyland WAY too much!!!

Friday, October 12, 2012

WOW! Has it really been 19 months since my last post?

Seems hard to believe that it's been so long. Life has really gotten away from me.

In a nutshell...we moved, the girls are enjoying school, and life keeps passing at light speed.

But I think the real question is: How is Ava doing?

Our beautiful baby turned 4 in June. Her check-up was perfect. Weight and height were low-average and her development was right on target.

She's been doing horseback riding lessons for awhile...but after a complete break-down last week in the car (on the way to lessons!) see decided to "take a break" because "it hurts when I ride horses." So we're on to a sports class where she gets to try soccer, t-ball, flag football, and track and field.

She's doing nature walks...

 Picking apples to make applesauce...

And hanging out with some unsavory characters...

Spending lots of time at Disneyland!

And acting silly with her sister!


She's had almost no tubie intervention. She had a very slight cold a couple of weeks ago and I gave her 2 half feedings to keep her from being dehydrated...but other than that, she's been doing it herself. Food, water, the works!

Her menu isn't the finest...but she's gained weight and held her own. In the morning, she usually eats a cheese omelet followed by a bowl of almond butter and honey. Weird, I know, but she starts the day with around 600-700 calories. Lunch is a grilled cheese or hot dog and then dinner might be chicken nuggets or chicken. We get a little bit of fruit and veggies in...although not the favorite by any means. She also eats squeezy or Dora yogurts, string cheese, graham crackers, bean and cheese burritos, pizza, ham, hard-boiled eggs, goldfish...etc. Unfortunately, she could eat her weight in chocolate chips and chocolate ice cream.

It was the weirdest thing...she just started eating. We LITERALLY and COMPLETELY stopped talking about food and tubies and would sit down at the table, set the food out and just eat. Slowly, she started sampling and tasting and then her quantity started to increase.

There were no threats or bribery (that's never been my style) and no talk about getting tubie because she didn't eat enough (kinda my style). She just did it on her own. It's been months since I've really used it for nutrition. I still have her give herself vitamins through the tube every morning, but besides that, ALL of her nutrition has been by mouth!

I've become so used to her eating normally now that most of the time I forget to bring any tubie food...and I almost never remember to bring a syringe...

She even gets to order her own meal when we eat out. And I'm amazed to be hearing, "Mommy, I'm hungry!"

So we take one day at a time and hope that this continues. Tubie will stay in place for now, but we're getting a lot of questions from her like, "What happens to the hole when we take it out?" "Will it hurt when my tubie comes out?" "Why am I the only one who has a tubie?"

And my answers: "You're tubie will come out when you're ready for it to come out." And, "You're body will know when it's time to take out your tubie." And we leave it at that. Short and simple.

As far as Zoe...

She's loving her new school. New friends, new house, new bedroom, new bunk bed...a fresh start. She's come alive in the kind and loving environment of her new school. She wants to go early to play with her friends...and she's asking to have friends come over and play. She was pretty beat down at her previous school and with all of the trauma she experienced over the years with being Ava's sister, you could feel the heaviness in her soul. But I'm seeing an amazing spirit be reborn in my oldest. I'm hearing her belly laugh a lot. Her imagination is taking shape. She seems lighter and...well...just all around happier. The kids in her new school are kind, friendly, and just plain 'ole kids. They work hard on kindness. Acceptance, empathy, and compassion are words used and practiced every day on the campus. Zoe has needed a tremendous amount of compassion over the last couple of years...and she wasn't getting it where we were before. Now, I'm happy to send her to school everyday. I know she WANTS to be there. She comes home skipping and laughing...not sour and angry.

But I think what has amazed me the most with Zoe...she has started singing aloud and dancing around the house!

My heart has been overflowing with joy for my precious girls!

Saturday, April 30, 2011

Ava's new diet...

I decided to go ahead and put Ava back on her blenderized diet after to many reflux-y events. The doctor has been out of town and I just didn't want to make Ava suffer through any more formula. She has also been dealing with an ear infection, so we've had a bit more crying...which means a lot more vomiting...which means a VERY unhappy mommy!

I saw a nutritionist within the last month to help guide me with Ava's diet. OK, actually, I walked into the office in tears and begged her to "Just tell me what to feed my child!!!" My last formulation was too high in fiber and caused things to move through her digestive tract too fast thereby causing her to mal-absorb nutrients. I just wanted a few recipes...I was sick of thinking and analyzing and worrying and second-guessing...SOMEBODY TELL ME WHAT TO DO FOR A CHANGE!!!!!! Somebody who has some common sense and knows what the H*LL they're talking about.

After two and a half years, I finally got what I've been begging for. Within a week, I had 2 recipes created by a therapeutic is fruit and yogurt based and the second is veggie and broth based. Both recipes give me the ability to easily substitute ingredients to give Ava a variety of foods within a weeks time. It's the actual measurements that were so important to me. 1 cup of fruit...simple and easy...any fruit...just use 1 cup of it. 2 TBSP tahini...can be almond butter or peanut butter...just use 2 TBSP. So many combinations and variations!  

After making the recipes and calculating out the calories, I realized Ava was going to be a bit short each day. So...I called the nutritionist and within a few hours, I had the additions and quantities needed to boost the calories in each recipe.

It's amazing to have some REAL help with all of this. I feel a weight being lifted from my shoulders. It's wonderful! I'm sure we will have to continue to tweak the recipes, but I finally have some help ...some support. 

Ava's body is LOVING being back on real food! She's not reflux-y at all and her stools were back to normal the first day. She fell and bumped her cheek today. Even with some pretty good crying, she didn't so much as gag once. On formula...every drop would have come spewing out of her. I'm so glad to have her back on real nutrition. It makes her feel good...and that makes me feel good.

Ava sings the ABCs...SO CUTE!!!!