Wednesday, February 11, 2009

Color Us Amazed!

After just five half-doses and a day-and-a-half, we have been amazed by the physical changes we've seen. Exhibit A is a picture from her birthday on January 18th. Her appearance in that picture is fairly consistent with how she looked normally. We'll call it "Before."





And prepare your eyes for Exhibit B. We'll call it "After." For the first time, we could see the whites of her eye to both the east and west of her retina. We're just amazed at the progress. Hopefully the doctor will be amazed tomorrow as well.

Tuesday, February 10, 2009

Medical Update

Most people with eyes who have fully exercised their Facebook curiosity muscle have noticed that my wife and I have a daughter who looks a little different from the others. Not only does this little girl have my darker complexion, narrower eyes, and keener fashion sense, but she has a little something extra going on around her eyes. It is undoubtedly because of these "masses" that she was abandoned by her birth parents and placed by the Chinese government on the special-needs list. The Chinese doctors diagnosed her as having hemangiomas, and she was given the treatment they could offer, which was minimal.

When we were presented with the opportunity to adopt her, her condition was described as one that typically goes away on its own over time. With that being said, we knew we were not dealing with something as simple as a "special-needs" label applied to someone with an unsightly birth mark. Whatever the case, it didn't really matter because we saw our daughter when we looked at the pictures. We appreciate that biological parents are never guaranteed healthy children, and we would treat her as our own. Getting her well is our priority.

It began with a pediatric visit who was quick to refer us to the FACES Clinic at Cardinal Glennon, which specializes in international adoptions. Their team of doctors expressed - without officially diagnosing - that it probably wasn't hemangioma and that her right eye probably has some degree of trauma as a result of the mass impinging on that eyeball. They referred us to an imaging doctor at a different hospital who is apparently the only doctor who could produce the images necessary to make the right diagnosis and determine the best method(s) of treatment. The consultation there resulted in an MRI with no subsequent specialized imaging. During that appointment, options of outpatient alcohol injection treatments and surgical removal were discussed with another medical consult on the horizon.

That brings us to yesterday. There we sat in a 8' X 10' room with a full-sized examination table, an extra chair, and sink area. In walked four doctors and two residents. While I had held out hope that the surgery would not be the preferred option, one of the first things out of his mouth was that they think surgery is necessary for th removal. The good news is that they think what she has is hemangioma. I had figured a surgery was going to be necessary cosmetically, so I was able to get over the surgery revelation surprisingly quickly. But to say that surgery is the solution is nothing more than the tip of this iceberg.

Before we get to the surgery stage, they have prescribed a beta blocker drug in the hopes that the masses will shrink in size. Ideally, the masses could shrink almost completely, making the surgery much more manageable. No matter how it is sliced, to see this through to completion, some degree of surgical removal will be necessary, no matter how small the masses get. In three weeks, the dermatologist will assess the progress of the prescription. In three days, another specialist will try to assess the realities we face in terms of her vision and ocular function.

You see (because I didn't), right now has nothing to do with aesthetics and cosmetics. We are not at the stage of worrying about and addressing what she looks like and how people will look at her. The doctors are single-mindedly focused on her vision and the functionality of her eye. It is a real possibility that if this condition persists as is that she could be blind in the eye. It is a real possibility that the mass has compromised the muscles in the eye lid, the muscles surrounding the eye itself, and/or the bone around the orbit. Reconstructive surgery in the future will not just be about cosmetics but potentially about reconstructing functionality to her eye. Worst-case scenarios involve resetting her eye should it shift out of position once the mass is gone and dealing with an eyelid that does not properly close or open. The prospect is multiple surgeries taking place five and 10 years down the road.

That is what we are looking at. Whether it ends up being a minor surgery to remove masses that are 99.9% gone and a relatively minor cosmetic surgery to further beautify our little cutie or ten surgeries to restore bone, muscle, vision, and cosmetics compromised by resistant masses, we are going to go the distance with it, time be damned, cost be damned.

On the one hand, we are absolutely 100% honored to do this and endure the process. On the other hand, we love our baby, and we are only doing what any other loving parent does for their own.Thanks for your prayers and well wishes.

Thursday, February 5, 2009

Canary in the Coal Mine

Cassidy provided an unexpected benefit recently. I had been feeling back a couple weeks ago, and then Shari, Zach, and Katie got sick. Their symptoms seemed pretty varied, so it was tough to diagnose anything across the board. On Monday, Shari told me she was going to take Cassidy to the doctor because she breaking out in a horrible rash. Her chest and back looked sunburnt, and it was on her face, behind her ears, and around her hair line. The second the pediatrician saw her, he diagnosed her without running a single test or taking a single sample: "Strep."

He then took a look in Zach's and Katie's mouths, and he proclaimed: "Strep."

He was then nice enough to prescribe antibiotics for all four kids.

Cassidy is still pretty snotty, but she's handling it okay. Her appetite is fine, and I don't think she's been any more persnicketty than normal. The good news is that she is now just under 22 pounds in weight, which means she has gained four pounds since we've had her. (On her tiny frame, that's a LOT...)