A week later...

I wrote this over a week ago and thought I posted. I was a little down when I wrote it, and now I'm in a much better place--looking at Audrey's dimply butt right now as her daddy puts her in the bath :)

Well we made it back home after an excruciatingly long day in LA. We were pretty sleep deprived from the night before so the day really dragged on for us. The night before,I had attended a talk at the Braille Institute that featured Dr. Granet, Audrey's ophthalmologist and two other doctors who talked about updates on research in childhood eye diseases while Brian watched the girs. Although the information presented was hopeful, and cited breakthroughs in gene therapy, stem cell research, and technology, and mentioned LCA research as a pioneering area in the gene therapy field, I know that success so far is only limited to the RPE 65 gene, which is the cause of only 6-16% of LCA cases, so our hope is tempered somewhat.

The night before Audrey's appointments are always difficult time for me. I'm just so worried about again being on the receiving end of shocking information. When Audrey went to the pediatrician at 2 months, I was a little concerned about her eyes, but the doctor completely caught me off guard with her alarm. When she said the word 'nystagmus,' I thought it was the worst thing in the world and drove myself crazy with research and worry. That was as you know, the tip of the iceberg, and now we wish it were only just nystagmus. Although nothing will ever change the love we have for our sweet baby girl, I'm feeling gun-shy with the doctors because I know that 66% of visually impaired children have other issues beyond blindness.

We encountered a lot of traffic on our way up even though we made our appointment at 2:00 in order to avoid it. The 101 was jammed at 11:30 am as we drove past downtown. How do people live like that? Luckily we were marginally entertained by Jim Rome's annual Smack Off on Sports Radio. We did get there in time to go to our favorite pho restaurant in my favorite LA neighborhood, Silver Lake. People there marveled at how lucky we were to have a sleeping angel at our side as we ate.

Anyway, after a quick lunch, we made the short drive to Children's Hospital LA, which was a mob scene. We waited for 3 hours to be seen for 15 minutes. We found out that it was because our doctor was going on a speaking tour the following week and had crammed his appointment book for this week.

After an hour in a waiting room that resembled a crowded chicken coop, Audrey was initially examined by a resident who I completely hit it off with, and I'm being totally sarcastic when I say that. Ever met someone who you just seem to say all of the wrong things to even though your intentions are good? That was me with this guy. Anyway, after a couple of awkward exchanges, he dialated her eyes and we waited for another two hours for Doctor Lee.

When we finally met with Dr. Lee, he told us that she has all of the classic characteristics of a baby with LCA, and recommended the ERG as a means of confirming that diagnosis. He reassured us that his team does more operations under anesthesia than any other in California, and that they are very comfortable with such procedures. This greatly set our minds at ease. We have an appointment for the ERG scheduled on May 25 and were told that by the time she is that age, the ERG will read very accurately.


Last summer, I was reading Eckhart Tolle's The Power Now, and I really enjoyed it. The main premise of the book is that you have to focus on the present moment because when you worry about the past or the future, you're just lying to yourself--the past has happened and the future is uncertain, the only thing that is real is now. Well, I'm a big worrier in general. I worry about how the umbilical cord was wrapped around her neck when she was born and the 2 car accidents I was involved in when I was pregnant with her, and I worry about what I will tell her when she is excluded from something for the first time because of her visual impairment. I know that the right thing for me to do is to just enjoy the happy baby that I have now, and I do, but it's hard to block out the worry.


For the last few months we have come to the realization that we have been especially blessed with a child who is going to have a very different kind of life, and by virtue of being her parents, so will we. Every day with every high chair mealtime disaster, laughing jag, and word (her daddy swears she says Dada with a purpose), she reminds us how lucky we are to have such an extraordinary existence as her parents. She has given us so much purpose and fulfillment that our hearts brim with joy.

In other news, I didn't mention that I found a teaching partner for next year, and so I'll be working part-time. Although I'll be leaving so many beloved colleagues and families, I'm so looking forward to the increased flexibility and wiggle room in our family schedule, as well as more energy and time to devote to my sweet little Miss.

Okay, time for bed. Thanks for reading!