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!



But the biggest news...SHE'S BEEN EATING FOR THE LAST FEW MONTHS!


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 chef...one 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!!!!

video









Monday, April 25, 2011

Not much new here...

There really hasn't been much new info to report. 


We're enjoying being dogless...the house feels cleaner, with less responsibility, less guilt, and a little less chaos. I miss Apollo, but his life is AMAZING now! I get lots of updates and he's doing really great. I'm sure we'll see him really soon...I can't imagine he misses us at all!


As far as Ava is concerned, she just had a blood panel last week and her iron level was just below normal. She is still on her canned formula and seems to be getting a bit "reflux-y" and "gag-y" (those are real medical terms...right?). I spent some time with a nutritionist who has designed 2 formulas for Ava which are more balanced than mine, and I have asked her doctor if I can get her back on real food. The doctor is on vacation (what a surprise) until next week, so we'll wait.


I don't normally ask permission to do things when it comes to Ava's well being, but I feel like her current doctors are truly on our side in all of this. Her GI asked to be "kept in the loop" as far as her formula goes, so I don't want to offend or alienate the first doctor that has actually taken a real interest in our case and allowed (and respected) my opinion.


So, for now, that's all I've got. Life has been pretty normal around here with school, gymnastics, and softball. Other than doing tube-feedings every 3 hours, I kinda feel like a regular family. Both girls are growing and thriving and we've been experiencing a lot more laughter and lightness. Life has felt far more "easy" over the last 6 months or so. We are eternally grateful for the reprieve, and we're trying to enjoy every minute of it! 


Hopefully I'll have more soon.


Waiting for Playhouse Disney

Happy Girl

Zoe can ride the swing by herself!!! (When she wears her tall shoes...)

Swimming at Grandma & Grandpa's

In over 300 visits to Disneyland over the last 4 years, we've NEVER seen this guy!!! Wish we'd had the girls autograph books.

Sweet girl