Three Years Old!

Her 3rd birthday

This weekend our daughter had her third birthday.  She celebrated with a few of her friends coming over for a princess dance party.  Priceless!

Due to her birthday, we also had an opportunity to visit with our daughter's pediatrician today for her well-check appointment.  Her height and weight continue to increase beyond what any of us ever expected.  She has grown 1.5 inches since the beginning of December and is now in the 51st percentile for height.  Her weight also continues to increase and is now in the 56th percentile.  She skipped a couple of shoe sizes recently and it seems that all of her pants have suddenly become too short.  We are so thankful for these growth spurts!

Her 2nd birthday...
she's gotten so big!

Today, our pediatrician asked if a medical student could participate in our well-check.  I always agree to these scenarios because I want every possible doctor to be exposed to PHACE Syndrome and the tests/medications needed with infants as soon as the segmental hemangioma is noted.  As I listened to our pediatrician give a brief overview of our daughter's medical history, I was once again reminded of how scary our journey was, and how blessed we are to be in such a great place today!  I am thankful for opportunities to use our daughter's story to encourage and educate others!

Our daughter continues to reach the typical medical and developmental milestones.  She is still taking Propranolol twice a day to keep her hemangioma from growing, but we hope the proliferation will stop this year.  We would love to wean her off of this miracle medication before her next birthday...but are willing to continue the medication as long as it is needed.  Our daughter is a blessing to us and is a reminder of God's provision in our lives!

Thankfulness

The cutest kitty!

Yesterday, our daughter had an opportunity to visit with her pediatric dermatologist for a regularly scheduled check-up.  It was another day for thankfulness!  It had been about 4 months since our last visit with this doctor, and our daughter continues to make great progress.  He doesn't even see a need to do any scans at the end of the year.  HOORAY!  Just last month, the dermatologist considerably lowered her Propranolol dosage and was very pleased yesterday with the progress she is making.  Her most current dosage is 1 per kilo.  The pink on her face and swelling are a little increased, so we're not lowering her dosage again right now, but hopefully we'll continue to wean her off of this drug next year!

Another celebration from this appointment was her weight.  When she got on the scale yesterday she weighed 31.5 pounds.  WOW!  I was shocked.  She really has grown in the last few months.  Our little girl who was so petite (struggled to be in the 3rd percentile) for so long is now over the 50th percentile mark.  Woohoo!!!

We do have a new health issue that we shared with the dermatologist.  Our daughter has recently developed some recurring sores on her scalp.  He believes they are innocent (possibly related to taking Propranolol, which is a beta-blocker), but did some culturing just to be safe.  He is treating her with a topical (moose-like) steroid until the test results come back.  The sores don't really seem to bother her much, but we want to be extra-cautious.  We should know the results of the testing in a couple of weeks.

Fall Fun!

During this time of year when we all pause to be thankful, I am reminded of how blessed we are.  I am thankful for a medical team that has had the wisdom and compassion to support our family for almost three years.  I am thankful for a drug that has been around for a long time helping people with blood pressure problems.  I am thankful that this same drug has recently proven ultra-effective in helping children with significant hemangioma.  Without this drug, our daughter's birthmark would have continued to proliferate and our daughter would be extremely disfigured.  I am most thankful for so many who love and care for our family.  There are too many of you to count or name, but I think of people who continue to pray for our family, ask about our daughter's progress, and give of yourselves unselfishly.  You will never know how much we appreciate you!

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!

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!

A week of firsts

This week was a week of firsts for our daughter!

1. Our pediatrician was PLEASED with our daughter's weight...woohoo! She's gained enough weight and is now back on the growth curve (3rd percentile), which is a true answer to prayers.

2. Because our daughter has gained weight, she is now big enough to move to a "big girl" car seat! This caused some rearranging in the back seat of the Tahoe!

3. Because our daughter is no longer in the car carrier, she got to sit in a real high chair at a restaurant for the first time!

4. Our daughter's first Thanksgiving was spent in Houston with both of our families. She was given LOTS of attention by LOTS of people who love her! We tried giving her the turkey and rice dinner (baby food jar), but she would have NOTHING to do with it. She shuddered with her first few bites, then refused to eat any more.

5. FORWARD PROGRESS! I don't think it can officially be called "crawling", but she is making forward progress and is heading for toys. Her brothers have no idea what the next few months will bring them as she heads for THEIR toys!!!

Jason and I are thankful for our family and friends who love us and have prayed for us and supported us this year. Thanksgiving has a new meaning for our family!

Calories! Calories! Calories!

Today at our daughter's 9 month appointment (can you believe she's 9 months old?!?), we were again encouraged to pump her full of calories. She remains in the less than 3rd percentile for her weight, and even lost weight in the last four weeks. She currently weighs only 13 lbs, 13 oz.

SOOOOOO...We're adding formula to her cereal for extra calories. We're feeding her cereal with every meal for extra calories. We're even adding an extra bottle to her day for extra calories. Our pediatrician is determined that our daughter will gain some weight in the next couple of weeks. We need to do all that we can to ensure our tiny little girl is as healthy as possible!

On another note, our recent appointments with her dermatologist and ophthalmologist have been very positive. Both specialists are encouraged with our daughter's development. We will have another round of tests and visit to the specialists in December.