Sunday, April 21, 2013

Another Trip to Pittsburgh to visit Dr. E

We just returned home from our third trip to visit Reesa's Krabbe specialist, Dr. Maria Escolar at the NDRD at Children's Hospital of Pittsburgh.  Reesa is part of Dr. Escolar's study to track the progression of Krabbe disease in order to help future children affected with the disease.  Dr. Escolar and her team were generally pleased with Reesa's health considering her age and length of time since she was diagnosed.  Although Reesa vision has greatly diminished she is still able to detect bright, abstract colors.  Reesa's hearing is very good.  She also had a bone density test and will be put on special supplements to help prevent future fractures.  They also preformed an MRI to track the demyelination process in her brain.  We won't know the results for a couple weeks but Dr. Escolar was optimistic that things weren't progressing as rapid as some affected children her age.  The most important thing is to avoid respiratory issues and to keep Reesa's lungs healthy.  So far so good!

Reesa was a perfect little girl the whole trip.  She did great on both plane flights and during all of examinations.  They were having issues with the MRI machine so Reesa had to sit still in the machine for almost 2 hours with no anesthesia.  She was perfect girl and didn’t mind sitting around at all!

As usual Dr. Escolar and her team were very knowledgeable and helpful in answering all of our questions.  We finally met one of Dr. E's nurses Tara West (in-person) which we were really looking forward to.  Tara has been an invaluable resource to our family over the last year.  She is available day or night and has helped us during many urgent situations.  We are unbelievably lucky and grateful to have her as part of Reesa's medical team.

Some other good news; Reesa's leg is healing nicely and she will have her cast removed this week!

Here are some pictures from our trip to Pittsburgh:


  1. Hi Jamie, Sean and Reesa.
    So glad to hear that the Dr. visits went well and that Reesa's cast will be removed. I think about you always.
    By the way, I love her toenail polish

    Phyllis Kownacki
    Lawrenceville, NJ

  2. Jamie and Sean
    I havent sent a comment in a while but I just wanted you to know i am thinking about you and that i always look on your website for any updates about Reesa and you guys.
    Please give her a BIG hug and kiss for me.

    Phyllis Kownacki
    Lawrenceville, NJ

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