Our big girl

From the time she was diagnosed with PHACE Syndrome, we've been fighting a weight battle...we couldn't get our daughter to gain. For a time she was dangerously under the growth curve, and we've worked hard to keep her at the 3rd percentile. Most recently, her pediatrician has had her on two doses of Pediasure a day to get her to gain weight! I just packed up her 6-9 month clothes last month...when she was 20 months old!!! We all figured we had a pretty petite girl on our hands!

But a few months ago, when our daughter was weened from her steroid, her appetite appeared! She is now a much bigger eater. Her favorites include rice and beans at any mexican food restaurant, mac-n-cheese in her lunch each day, and cupcakes with icing! It is with great joy that I announce that she has now crossed into the 10th percentile for weight. She weighed 22.07 pounds at her weight check appointment on Friday. The pediatrician even commented how she's filling out and looking more and more like her brothers.

I thought I'd never be able to call our daughter "big". Hooray...may the growing continue!

Bye, Bye Steroids!

Our daughter is now 20 months old and I am happy to announce that she has officially been off steroids now for more than three weeks. This has been a goal of ours ever since she took her first dose (February 2010), and now, it is our reality. Steroids are an incredible drug that impacted her life in many positive ways, but they also have many ugly side effects. The most serious for most is that when someone takes steroids for an extended amount of time, he/she typically has a compromised immune system. This is something we've had to be very careful about over the last 18 months. We are so thankful that she is now able to be off of this very powerful drug!

Our daughter started back to school this month and is doing well. This picture is from her first day. Some of her favorites include ice cream, shoes, jewelry, baseball games and playing cars. She is a well rounded little girl who loves her brothers very much!

It's been a while...

So, I was enjoying myself at home tonight, catching up on the lives of my friends through reading their blogs. Then, I did the unthinkable...I clicked on my own blog and realized it's been almost 5 months since I've updated the progress of our precious little girl. That's a good sign..it means not a lot of drama!

Ok, a little drama. We got a note home from our daughter's mother's day out class in May that Hand-Foot-Mouth and Chicken Pox were both diagnosed in her class. Then a few days later, a bump, then another bump. Because it was a Friday night, I called the pediatrician just to make sure we didn't need to adjust any of her medications in case we had a flare-up over the weekend...and who knew...the Chicken Pox virus is VERY dangerous to kids on steroids. Even though our daughter is on a low-dose of steroids, we were required to spend 48 hours in a special isolation room at Dell hooked up to an anti-virual IV. Not a lot of fun, but she did great, and the meds must have really worked. She only ended up with 15-20 bumps total! And, by the way, the doctors at Dell are fantastic!!!

Our daughter learned to walk on her own timeline. She was 16 months old when she took her first steps...but the first time I saw her walk she took 8 steps in a row. She was officially a walker in just a week. She was READY!!! She is now chasing her brothers all over the house!

Our daughter is still tiny for her age and teeters around the 3rd percentile (she's still wearing 6-12 month clothes). She began drinking Pediasure once a day for an extra dose of calories. Fortunately, she likes the taste! I believe this supplement has really made a difference. She has an appointment with her pediatrician in a couple of weeks and I'm anxious to see how much she weighs!

Our daughter does have her first addiction...shoes! It was one of her first words, "sheeeez"! She notices shoes, tries on any pair laying around the house and will even take them off of your feet if you'll let her. Last week she was clip-clopping up and down the hall with my heels (one shoe on and one shoe off). It's pretty precious!

Thank you for the continued prayers for our daughter. Another round of doctor's appointments are right around the corner and I will update her medical condition soon!

Big Girl!

I am constantly amazed by the joy our daughter brings to us each day! Her smile is contagious and she can wrinkle her nose to make us all laugh!

We had an appointment with her pediatrician last week and had more good news. She now weighs 17 lbs, 7 oz, and is in the 5th percentile for her weight. Because she had been off of her steroid for several weeks, she was able to get all three inoculations...yippee!

Our daughter continues to develop as expected. She is consistently crawling on her knees, pulling up on objects (including her dad's legs), screaming to get her brothers to look at her, eating food off of our plates, and saying her name over and over.

She's a true joy, and I am thankful for her!

Birthday Girl

I can't believe this day is here, our daughter is one today! In some ways as I look back over the last 365 days I wonder how someone could possibly have that many doctor's appointments over the course of a year, but in other ways, I look back and can't believe how time has flown. Overall, our daughter's health is good and we are thankful that today is a true day of celebration for our family.

As I ponder the many things about my daughter that make me smile, these are the top five that come to my mind:

5. Her tiny stature makes her very snuggleable, and her smile can brighten your day!

4. Her brothers show her love in more ways that I ever imagined they would (singing songs to her, making her paper dolls for her wall, letting her play with their cars and baseballs, sharing their ice cream, reading her books, etc).

3. Open mouth kisses right on the cheek bone...slobbery, but sweet!

2. "Mmmmm"--her signal to us that she would like her bottle or something to eat.

1. Pink, ruffles, flowers, bows and bling...I love having a girl!

It's incredible to me that God chose us to be her parents! She is an amazing girl with an intriguing story. I am looking forward to the many ways He will use her story to bless other people over the next year! I pray that my eyes are opened to see these opportunities.