update

Lets see...  Since our last posting Adele has been busy!  She was sent to Cincinnati Children's Hospital for a CT scan which we were able to get on disc and look at for ourselves.  Although we can't really tell what we're looking at, it seems to be very vague.  We see Dr. Kulwin this Wednesday, the oculoplastic doctor who requested the CT, and we won't be surprised if he asks for a more detailed MRI.  We were previously warned before Adele's CT that she may have to be sedated and admitted if she couldn't be still for the short 3-5 minutes the scan would take to run, but our little trooper did great!  With a little "sweet-ease" concentrated sugar water on her passie, Adele was able to snooze for a few minutes during the scan.  Following the scan, we met with Gina Carrol from the Cincinnati Association for the Blind and Visually Impaired, and were able to discuss with her our hopes for Adele, and how their association could be of assistance.  We were happy to hear how impressed she was with Adele's attentiveness at such a young age, and were all in awe of how she was working so hard to hold her head up for such a long time during our visit.  It was great to talk to someone who understands that blindness does not mean living a complacent life.  The following day, Neal and I took a trip with Adele to Indianapolis for a visit to the ocularist by the name of Kathy Hetzler.  An ocularist is a person who makes and fits artificial eyes and scleral cover shells.  The prosthesis is made of plastic and worn inside the empty socket or over the unusable eye tissue.  The trip took three hours one way, and took all day.  Although long, the drive gave us a nice opportunity to spend some time together, and for us to get closer to our baby girl.  Upon arrival to the ocularist, Kathy measured Adele's sockets by placing a small conformer in each orbit, and determining how much bigger hers would need to be made.  We were then asked to leave for a couple of hours while her conformers were being made, and got to have a nice lunch and shopping break.  When we returned, Kathy put Adele's conformers in - her right side went in easily, and her left had to be readjusted after struggling to get it in - although Adele didn't seem to enjoy getting her conformers put in (she showed off her set of lungs!!), she doesn't mind at all that they're there.  Because of Adele's age and rapid growth, the ocularist said that she will need a new "set" every three weeks or so.  The conformers look like a tiny clear concave shell attached to a small clear "peg" that sticks out so as to be able to move them around (stretch the tissue) and to be able to easily remove them (see our pics).  Adele does look "different" with them in, but I can already tell that her orbits appear to be much fuller than before (her lids aren't sunken in anymore!).  Our family and Adele has adjusted well to her conformers (the boys ask "What are those plastic things in her eyes?") but has posed a new challenge to taking her out in public.  As a proud parent it is instinctual to want to "show off" Adele, but with her conformers I feel as if I don't want to frighten those that are unaware of her condition - and don't want to take the time, or don't have the energy to explain her condition to the waiter, the cashier, or the nice old folks walking down the street.  Kathy did tell us however, that she anticipates Adele having actual prosthetic eyes around the time when she turns six months old.  She asked us to be thinking about an eye color (never thought we'd get to choose our child's eye color!) and we can't wait to see her with them in.  I know in actuality that she won't see us, but to see what it would be like to have her "look" at us will be both wonderful and heartbreaking.  This week holds another doctors appointment, and in two weeks we'll be visiting Indianapolis again, but things are looking up!  We've started to emotionally stabilize, but still have our moments...  looking forward to what the doctor has to say and will keep you posted when we hear! 

So it begins...

This week marks the start of Adele's journey into the world of Oculoplastic surgery, ocular prosthetics, and orbital reconstruction.  Yesterday we took Adele to meet the Oculoplastic Surgeon by the name of Dr. Dwight Kulwin.  Our family is very familiar with Dr. Kulwin, as he was my oculoplastic surgeon as a child.  Before her appointment, our family was very anxious and anticipating a visit that would result in disappointment.  We were happily mistaken.  Dr. Kulwin informed us of different courses of action that could be taken in Adele's situation.  He told us that if Adele is truly anophthalmic (no eyes or remnant eye tissue) that the treatment is mostly all surgical in order for her orbits and related structures (sinus' - brow) to grow.  However, if there is any tissue at all (even microscopic) her orbital structures will "want" to grow and may only need assistance through surgery.  If she is truly anophthalmic, there is a tissue transplant procedure (tissue is transplanted from her buttocks to her ocular orbits) that can also potentially stimulate orbital growth. - - (After hearing that, I was more than happy to offer some of my butt tissue!!)  Also, if Adele has no ocular tissue, she may be a candidate for "expandable ocular implants" rather than the "conformers" that are used otherwise.   We were glad to be given so much information, and happy to discover that different treatments may be available.
Also, Adele and I see one of the Children's Hospital Human Genetics doctors tomorrow, and will take a trip to Inianapolis to see the Ocularist next week (the people that will make Adele's conformers and if needed a scleral schell).  We'll keep you posted!!   

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