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.

From the perspective of the specialists...

...our daughter is doing great! As we went from one MRI follow-up appointment to another this week, I was so thankful to hear how pleased everyone is with her progress.

On Monday we saw the neurologist. He said that the MRI showed "stable vascular anatomy without new aneurysm or other adverse change since March." He is pleased with her physical, neurological and emotional development. (She was quite a flirt with him, which allowed him to see her precious personality.) He does not have any immediate plans to rescan her and would like to see her again in 6 months.

On Tuesday we saw the dermatologist. He said that he too was pleased with the MRI results, but felt that the hemangiomas on her cheek, neck and eye looked a little enlarged. He has put her on a two-week regiment of oral steroids with the hope this will give involution a boost! I will talk to him over the phone in two weeks to tell him of the progress and then he will see her again in 6 weeks.

On Wednesday we saw the ophthalmologist. She said that she was also pleased with the MRI results, but agreed that the hemangioma on her eye looked a little larger than it did a month ago (she actually got out the Christmas picture I sent her to compare...smart lady!). I also talked with her about our daughter's constant teariness, so she prescribed an additional topical steroid that we will drop in our daughter's nose in hopes that it will shrink down any swelling around her tear ducts. We will see her again in two months.

After finishing with all of these appointments, I called and talked with our pediatrician to update her on the new medications. She is so fantastic to talk with me and answer all of my questions. I am once again reminded of how blessed we are to have a medical team giving us a consistent message. Thank you God for doctors!

Now, for the best news of all...our daughter started saying "ma-ma-ma-ma" today! Hooray! This is probably the best Christmas gift she could give her mom!

Finally!

We've known since this summer that our daughter would have another scan in December to evaluate her hemangiomas, carotid artery and aortic arch. She was originally scheduled for a CT Angiogram for 12/6, and then scheduled to see her dermatologist, neurologist and ophthalmologist all on 12/9. We were so excited to get all of these appointments in before January 1st! What a great plan!

Then, after attending the PHACE Family Conference in Milwaukee this fall, Jason and I wondered about the possibility of changing the order for the CT Angiogram to an MRI/MRA. From what we learned, we thought an MRI/MRA would likely be able to see all the necessary images, but with MUCH less radiation. So, we asked our specialists, and we were told that we could easily change the orders without a problem. Woohoo!

Unfortunately , the orders for the new scan did not come through until 12/2, which meant we had to choose a new day for the scan. After some rescheduling and flexibility on the part of many specialists, we were able to get every appointment rescheduled for this week, but we would have to drive to San Marcos first thing Monday morning to make this happen. When I took our daughter on Monday morning for her MRI/MRA in San Marcos, she had quite a bit of congestion and a low grade fever, so the paramedic opted to delay the scan due to fears with the anesthesia. (I am thankful that they are cautious!)

So, once again, we relied on the flexibility of others, we moved the scans and all of the specialists appointments for the 3rd time and tried again.

Today we were successful. Our daughter was able to have her scans. The radiologist was able to get all of the pictures requested by the specialists. The paramedics that helped us were super kind and we were even able to do a blood draw for a PHACE Syndrome genetics study.

This 3rd round of rescheduling appointments with our specialists means that I will have to stay home with our daughter next week while Jason travels with the boys to Missouri to see family for the holidays. I hate that we're going to be apart for a few days during my holiday break, but I am thankful that all our our specialists are so accommodating and are "fitting us in" during this busy time of the year!

We received a call tonight from our daughter's pediatrician that the MRI/MRA report has already been received and that everything looks stable. Good news! We will see our specialists next week and will learn more details about the test results in the week to come. Stay tuned!

Who Knew?

So, I had the boys at the dentist over the Thanksgiving break for their regular check-ups and cleaning. While we were there I mentioned that they had a little sister at home. I said something like, "she is only ten months old, but she DOES have eight teeth". They practically insisted that I bring her in immediately. They informed me that they begin seeing children as young as six months.

So, yesterday our daughter had her first dentist appointment. It was almost comical. Though we do see a pediatric dentist, I'm not sure the dental hygienist has had previous opportunities to work with many babies. She asked me questions like, "Does your daughter currently take a pacifier, still drink from a bottle, suck her thumb or drink from a sippy cup?" REALLY? She's 10 months old...she does ALL of those things! The sarcastic side of me wanted to proclaim that our daughter is proudly drinking from our crystal stemware, but I withstood the temptation and politely replied that in fact our daughter does currently do all of those things, but that she's already learning to use a straw.

Then, when the dentist came in, I sat our daughter in my lap facing me. I then laid her down in the dentist's lap for him to do a quick exam. He was pleased with her teeth so far and we'll be back in 6 months. Who knew that babies so young were supposed to see the dentist?!?

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!