We are trying to get our bodies back on the Eastern time zone! It is 8:30 tonight, Ali is already in bed, and Kelly and I would be happy to go up ourselves at any moment! The problem with that is that you end up waking up at 4:30 in the morning with eyes wide open! Plus it lets the older boys ravage the kitchen if we go to bed too early. The grocery budget can not afford that to happen too many evenings in a row!!
Today Ali went to Cincinnati Children’s for a marathon of doctors appointments. Because the port wine stain on her face is sometimes associated with an increased risk of glaucoma, her first appointment was an in-depth ophthalmology visit including vision screening, eye dilation, pressure testing, and pictures of her retina with Dr. Yang. The results were somewhat mixed, although not discouraging. Ali’s right eye pressure is greater than her left. And, the diameter of her optic nerve is slightly greater on her right than her left. Does this mean that she has glaucoma? No. While both measurements were higher on the right than the left, the same side as the port wine stain, they were only moderately different and were still within “normal” range. They want to do some peripheral vision testing in a couple of weeks just to make sure there are no deficits there. Then, I think they just want to periodically check her eye pressure, evaluating it at different times of the day, to determine if it is something that needs to be treated or not. Treatment would be in the form of daily drops that helps limit the eye’s production of fluid and/or help increase the fluids passage.
After that we went to the Cincinnati Children’s Hemangioma and Vascular Malformation Clinic. This is a multi-disciplinary clinic that pulls together all the different specialists that are needed to treat Ali’s condition. This is one of only a few clinics of its kind in the U.S. It was something that I had never experienced before in all my years in health care. Once we got checked in, a Hemangioma Fellow came in to evaluate Ali from a surgical perspective and get a history and physical. While she was there, the medical director, Dr. Adams, joined us and we had a long conversation about Ali and what her options were. Dr. Adams was wonderful. She was very laid back and personable and encouraged us greatly. Then, while the fellow and Dr. Adams were still in the room, Dr. Elluru joined us. He is the ENT that handles all of the laser surgery that is done. I sat there amazed as these three doctors stood around in our room as if they had no where else in the world to be and examined Ali, answered our questions, and discussed the plans for the future. It was a very collaborative experience and it was extremely satisfying.
Our decision at this point is to try and get to know Ali a little bit better before we do much more. One of the things that we talked about was Ali’s “clumsiness”. It is hard to know, with the short amount of time that we have known her, if that is just Ali going through a growth phase or if there is something more that needs to be evaluated. She does have one leg that is just slightly longer than the other, but not beyond what any other person might have and definitely not enough to affect her gait or balance. Also, her one hip is a little more stiff than the other. But, still, not enough that it should have a great affect on her. We had originally planned on having a neurology appointment next week, but we are going to put that off until after the first of the year so that we can watch Ali over the next month or so and see what we observe on a daily basis. Plus, we have thrown a lot at the girl in a very short period of time. Everyone agreed that it was a good idea to allow Ali to adjust to her new life before we try and throw too many things at her!
In all, I think we were very happy with the experience today. There is no question that without this clinic so close to home, we would be making the trip out to NYC to follow up with Dr. Levitin, the surgeon who performed the procedure on Friday. His knowledge and commitment to this medical condition is unquestionable and we liked him instantly. His willingness to see Ali on such short notice and make special adjustments to his schedule was so very appreciated by Kelly and I. But, it is hard to argue with the approach taken by the clinic at Cincinnati Children’s, especially when you factor in that the Cincinnati clinic is about 20 miles from our house!
Overall, although a long day for Ali, it was a good day. Cincinnati Children’s provided us with a Mandarin interpreter for the entire afternoon. It was nice to ask various questions of Ali and get the answers without resorting to hand gestures or pulling out our translator apps! It took Ali awhile to warm up to her interpreter, but her presence today was invaluable.
The one challenge we are having is finding food that Ali likes and will eat. She eats a lot of fruit and likes boiled eggs, but that will certainly get old quickly. The interpreter told us about a Chinese grocery store in Cincinnati. I may try and get by there sometime this week and see if there is anything that can be of benefit to us.
All is good…
Cameron