Wednesday, April 30, 2014

As we head up the hill

Life with Rhombencephalosynapsis is a lot like riding a roller coaster. You have your ups and your downs but you also have a of those moments where you are neither up or down... just coasting. For the past few months we have been coasting. We had the chiari / pappilodema scare earlier this year. When that passed we had a nice quiet lull.

There was some bloodwork and tests mixed in, but nothing major.

Now it seems we are climbing the hill. A recent dental visit showed that Abby Girl has an abscess above a dead tooth. Years ago Abs fell off of our wooden kitchen bench and landed on her tooth. That killed the nerve in the tooth. Since then the tooth has been black but otherwise fine. Now it seems she has developed an abcess above that tooth. She also has developed several large cavities due to her lack of enamel (she has weak enamel, thin hair and thin nails). They need to pull the tooth, drain the abscess and put pediatric crowns on the three teeth. With that much work she needs to be anesthetized. So on to surgery.

PLUS, her allergist wants to do food challenges for a couple of her allergies. Each one must be tested independently so that means two separate trips to the day medical center at CHOP for a full day of testing.

Thankfully she is the worlds toughest kid. She hears surgery and days at the hospital and she responds with "I can handle it" or "Mom, we can spend the day together." Part of me loves that attitude and part of me hates that her life has involved so much "doctoring" that these things are normal to her.

I guess we have not choice but to take the good with the bad.

FYI - Surgery is June 26th, First food challenge is May 14th and Second food challenge is waiting to be scheduled. Hopefully we can put off until July.

Posted by Kristen Fescoe


  1. Thanks for the date. They're in my calendar. :)

    She's one tough cookie. I wish she didn't have to be for the reasons she is, but it makes Abby, Abby.

    Love to you both.