Arielle

Arielle is not content to play with her toys in the pre-determined fashion.  She's doing a great job of exploration and experimentation.

Many thanks to the Merlicks for the long term loan!

Arielle has a new web site: www.angelphace.com. We appreciate how many people have wanted to experience this journey with us, and hope this will be an easier way to communicate from this point on. For some of you, our updates are probably too much information. For others, not nearly enough. To receive any future updates, you will need to either 1) reply to this email and tell us to subscribe you, or 2) sign-up yourself at the web site. Our blog will turn into more of the day-to-day cutesy baby stuff grandparents and the like can’t get enough of.

You’ll find the latest update in greater detail on the site, and much more. Short version: we’ve had lots more tests since our last update. Once again, far more encouraging news than the “tough stuff,” but we’re still struggling to get the hemangioma to stop growing. It has the ability to destroy anything in its path, so that is the number one thing on our minds, hearts and prayers at this time.

And for you photo lovers, this one captures just how much Arielle has grown – including her precious gummy grin.

Lastly, a quick plug for the “Mighty Quinn,” a little boy that has had a much rougher time with PHACE than Arielle. His parents are desperate to fund a trip to New York for him to receive an important operation. Details can be found here: http://www.helpquinn.com/. If you’re looking to gain good karma, transfer a day or two of your Starbucks fund to his airfare and the universe will thank you.

Thanks,
Mary Alice, Travis and Baby Arielle

Hello family. I turned 19 weeks on Friday. Mommy and Daddy are being nice to me, and play with me all the time. I'm starting to like these people even when they're not feeding me - which is still on quite a regular basis. They think I'm about 15 pounds, well more than twice my birth weight. Hope you enjoy the photo show below. Hugs and kisses to all! Love, Arielle

Aww, what a cute pair!

This is me standing. I love standing (with a little assistance from Mommy still).

I also love my 360 activity center, and making the lion "ROAR." If you look closely at my feet, you'll notice I'm not quite tall enough to be in this without a little assistance from a baking pan. :)

Finally, here's me learning how to crawl. Sometimes I like this, while other times I find it frustrating. But I always love hitting the toys dangling above my head.

This was the third session. We found that laughing helped encourage Arielle to do the same.

Ok, so they're more like the Price is Right, but Pat Sajak never punched anyone out on the golf course.  I feel safer infringing on his copyright.

This song and dance is a post-feeding routine.

Source Video (7.8 mb)


Install DivX if you have any problems watching the original source video.

Hello. Hard to believe it's been about two months since our last update, and that Arielle is three months now. Since most people want photos, here's one of the first capturing her smile (hello adorable!!!):

We've received mixed results since our last update, but good definitely outweighs bad. We'll start with the tough stuff. The most recent MRI revealed another portion of Arielle's brain didn't form properly: the right cerebellum, which is responsible for things like controlling movement and processing language. This now means two different parts of her brain didn't form properly because of PHACE Syndrome, the rare disorder linking a large, infantile hemangioma (abnormal mass of capillaries - usually of the face), and birth defects of the brain, heart, arteries, eyes and/or skin.

As was the case with the other brain defect (complete agenesis of the corpus callosum), it will likely be quite some time before we understand what this means for Arielle, her growth, development and future. Translation: please continue to keep her in your thoughts and prayers!

In the short-term, we've been attempting to stop the growth of the hemangioma on her face. The picture above does the best job of explaining what a hemangioma looks like. When Arielle was born, there were only faint pink marks in areas that quickly exploded into the large, red masses that have now taken over the better part of a quadrant of her sweet little face. In an attempt to prevent any long-lasting facial deformities and worsening impact on her right eye, Arielle went on steroids about two months ago. Thus far, the medicine seems to have helped slow the progress, but has yet to fully put the brakes on it.

One of the best pieces of news is that the echocardiogram determined Arielle's heart is structurally and functionally normal. Yippeee! And, another test revealed the bulk of her right optic nerve formed, meaning there may be hope for some sight in the eye that was previously diagnosed with permanent blindness.

As many tests as she has endured, many more are in store for her future, and we're beginning to understand regular tests and monitoring are going to be a part of our family's life. Arielle still needs an MRA (magnetic resonance angiography), a special type of MRI test designed to evaluate arteries, veins, and the flowing blood within them. Another MRI focusing on the eye area should tell us more about what's possible in terms of restoring any vision to her right eye. Soon, we travel back to Texas Children's Medical Center in Houston to visit one of the leading doctors specializing in PHACE Syndrome, and are eager to receive any new insight. We also plan on attending the inaugural PHACE conference for the condition in November.

We're extremely pleased to report that thus far, Arielle has met all of the developmental milestones on time, and even early in some cases. She regularly coos and smiles, and has taken a particular liking to: FOOD, music, FOOD, being outside, FOOD, bright colored toys, FOOD, and Big Bird. Did we mention the girl likes to eat?

Thank you for caring about our family!
- Mary Alice, Travis and Baby Arielle

Here's a couple of videos from this morning.  Sorry for the squeaky dog in the background (and sometimes the foreground).

I'm obviously going to have to post here more regularly than just on the major holidays.

This will be kind of short as I don't have Mary Alice's wordsmithing skills.  Hopefully I can free time for her to write a more detailed update.

At the moment, Arielle is receiving prednisolone (an oral steroid) to arrest the growth of her hemangioma.  It does appear to be helping, although we did back off the dosage a little too quickly two weeks ago.  We've since increased it to the maintenance level.  We go to Houston later this month to visit with Dr. Denise Metry, who specializes in PHACE syndrome.  We're looking forward to what she can tell us about Arielle's case.

Thanks for checking in on us - it's hard to believe tomorrow is Arielle's three month birthday!