Saturday, December 7, 2013


Yesterday was a long day of various tests for Gianna at the Massachutes Eye and Ear Infirmary. The most important test was also the trickiest; the electroretinography requires this crazy-looking contact be inserted in the eye. Some places sedate children in order to do it but our G was a sport and we got it done with no anesthesia.

The tests took most of the morning and after a short lunch break we went back for test results and consultation with Dr. Berson, the big-name guy we'd traveled up here to see. It was worth the 18ish hours of driving with 3 little kids losing their minds at various points. He said that although Gianna's test results indicate a retinal problem consistent with Usher Type 1b, the eye disease is very mild at this point and he expects her to have a lot of useable vision for a long time.

He said, and I quote, "when I go home tonight and think of Gianna, and I will, I'll think positively because she has strong waves (on the ERG.)"

He was the kind of older gentleman who wouldn't have sugar-coated anything and that made his positivity that much more valuable. Even though it is the opinion of one doctor about a disease that lends itself to a certain degree of unpredictability, I felt like a new person when we left his office. He was adamant that Gianna's education was unlikely to be negatively affected and suggested we begin Vitamin A palmitate supplements (after a liver scan) as well as being sure Gianna is eating oily fish at least twice a week (he has been running clinical trials on the effects of Vit A and DHA on retinitis pigmentosa.)

Our hotel is within walking distance of the Massachutes Eye and Ear Infirmary (such a solid, patrician sounding name) which is connected to Mass. General Hospital. It's very bustle-y and pretty close to lots of universities and colleges (sooo many smart-looking people striding about purposefully.)

This was our first time in Boston and what we've seen is so cool. We walked to the New England Aquarium which is right on the wharf. I like old stuff and I've always been sort of fascinated by this part of the country and it's proximity to the sea and all of the history behind it. The kids enjoyed the aquarium despite the fact that all of the big sharks have been moved to an aquarium in Quincy while the tank they are normally in is treated for a parasite. The aquarium offers free admission to people with visual impairments and I'm just so thankful we had to pay the full price of admission for everyone.

Thank you all for the prayers and offering of sufferings, small and large. They have been fruitful not just in terms of the good news we received on this trip but in the peace and hope that I was beginning experience again prior to this doctor visit. I am so humbled by how generously everyone has prayed for us. Thank you.


  1. Praise God, what an encouraging day for you guys!! We won't stop praying.

  2. What wonderful news! I'm so glad to hear it! You'll still be in our family's prayers!

  3. I love Boston! I'm sure you've seen this article, but I saw this today and thought I'd post the link. This writer also has Usher syndrome and talks about her experience.

  4. Happy to hear the good news & I will keep your family in my prayers. :)

  5. I'm assuming you mean Cincinnati? live in the "Nati" too. Well in Fairfield,,just north of Winton Woods.What parish do you belong to?

  6. That's good news! It shows that with the right test results coupled with a competent doctor, we can have a peace of mind after we leave the hospital. A visit to any other diagnostic center or doctor would probably have left more questions than answers. I hope Gianna overcomes her condition just as what the test and doctor told you!
    Meghan Garner @