Today our daughter had another round of appointments with her specialists, and it was a day full of great news!

We began the day with her ophthalmologist, Dr. Onan.  I was very nervous about this appointment because it had been a year since we'd been with this specialist and we knew her goal was to try to do some exams that our daughter had not had since she was just a few weeks old.  Our daughter is "very two" right now, so I wasn't sure how she'd comply...but she was GREAT!  The doctors started out by checking the pressure in her eyes, putting drops in her eyes to dilate them, and then they had her identify pictures of different sizes.  Then, after playing in the lobby for about 15 minutes, they gave her a very thorough exam using multiple flashlights and lenses.  In the end, we found out that our daughter is depending on both of her eyes equally.  She is not dominant with either eye which is a real praise.  With the number of days her left eye was swollen closed as an infant, the doctors were afraid her left eye might not be developed properly.  For her age, her vision is good.  She may need glasses one day, but it won't be due to PHACE Syndrome!  We will visit Dr. Onan again in one year.

Then this afternoon, our daughter had an appointment with her dermatologist, Dr. Levy.  He is an amazing support and I always look forward to opportunities to hear from him about our daughter's progress.  I was anxious to ask him about the possibilities of laser treatments and begin to make a plan regarding some of her blood vessels and remaining hemangioma.  He is very pleased with her progress and thinks she looks beautiful.  He described her most recent MRI as "unremarkable".  We discussed our options regarding laser treatment and will talk about them again when the hemangioma is no longer growing.

We did have a strange "first" today when one of our daughter's hemangioma bled considerably while she was sucking her thumb during a nap.  Luckily, we were in the car on our way to see Dr. Levy when this happened, so I was able to ask him about this.  We found a couple of places in/on her mouth that could have been the culprit, but Dr. Levy said that he would not define this as "ulceration" since it was the first time we've seen something like this.  We will watch for re-occurrences.  We will try to wean her off of the Propranolol over the next months and plan to see him again towards the end of the year.

Once again I am convinced that it is the specific prayers of our friends over Ella's eye that have contributed to her positive appointments today.  We know that God hears the prayers of His people and our daughter is just one example of this!

Great Appointment

Today our daughter had an appointment with her dermatologist. He is VERY pleased with her external birthmarks, MRI results, and development. Though she is the second oldest patient he's ever had on such a large dosage of Propranolol (3 per kilo), he is not concerned. The medication is working and we are thankful.

Looking in the Mirror

Tonight I had a memory flood my mind. I remembered back to when our daughter was just a few weeks old. She weighed less than 10 pounds. Her birthmark was very large and dark red/purple. Her cheek looked like she had a golf ball in her mouth and her eye was swollen closed. I began adding "bella" to the end of her name as a reminder that she is beautiful.

I distinctly remember a morning when I had given our daughter her normal dose of medications and took her with me into the bathroom to wash out her medicine dropper. Her reflection in the mirror caught me off guard. I'm not sure why, but looking at our daughter in the mirror was shocking to me. I cried because I was sad for her future. I wondered how this baby girl would ever be able to look at herself in the mirror as she got ready for school. I feared the ridicule of peers who wouldn't understand why she looked different. I thought about her teenage years and how hard these years are for all girls, much less a girl who looks different from others. I was so sad!

Flash forward two years...

Our daughter just had her second birthday. She is a girlie girl and I was excited to get her some dress-up clothes, hair bows and jewelry to add to her collection. Jason found a full length mirror on sale which thrilled me because I thought it would complete the "dress-up" theme. She could primp and look at herself all day long!

Tonight our little girl got down from the dinner table with a little food (ok, a lot of food) still on her face. She walked up to her new mirror (which still happens to be in the living room) and touched the dirty places on her face. She noticed that her face looked different. All of a sudden I was reminded of my fears from her first few weeks in our lives. I am thankful that her beautiful face is not disfigured. I am thankful for the doctors who knew about the impact a blood pressure medication would have on her birthmarks. I am thankful for her smile and the joy she brings to my life. I am thankful for this experience tonight where I was reminded that our daughter is a miracle!

Thank you for the specific prayers you've prayed for our daughter!

Wanna hear some good news?!?

That's how my conversation started with the neurologist tonight, "Wanna hear some good news?" He was calling in response to our daughter's MRI/MRA scans that were performed last week.

Let me back up to the beginning of this chapter of our lives...

In early November, our daughter completed her routine round of doctor's visits with her specialists (Neurologist, Dermatologist, and Ophthalmologist). They all agreed that because it had been about a year since her last MRI/MRA, it would be a good idea to scan her again to see what is happening inside her body.

When it came time to schedule these tests, Austin Radiological was very nervous about fitting her in before the end of the year. She was scheduled for 6 separate exams both with and without contrast (orbits, brain, head, face, neck, and chest) that would take up to 3 hours on the table. Finding that type of time in the ARA schedule was tricky, but we were lucky to talk with a very helpful lady to was able to fit us in in only a couple of weeks...then our daughter was diagnosed with bronchitis, so we had to postpone...then ARA scheduled her for a mobile table (which can't be used when a child is being sedated), so we had to postpone...then her lungs weren't clear, so we had to postpone...then ARA requested we move from a PM time to an AM time, so we had to postpone...then our daughter was sick again, and we had to postpone...six times! Her pediatrician eventually chose to put her on a steroid to strengthen her lungs so we could have the test, and voila...she had her tests on Friday, 1/13!

The tests went well. Our daughter did great and slept through all of the scans (the paramedics were a little concerned that they wouldn't be able to keep her asleep the whole time). The medications rocked her world, but by the next day, she was able to walk and talk normally. She came down with croup that evening, but everyone assures us it was unrelated.

So, to our results...

- The hemangioma around her eye is GONE! This is the area that received the most prayer due to her eye being swollen closed and vision concerns from the time she was just a few weeks old.

- The hemangiomas on the back of her neck and in her chest are stable.

- Her carotid artery is stable.

- Her brain looks great.

- Her heart looks great.

Celebrate with us as we celebrate our daughters health! We are thankful!!!

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!