Saturday, February 25, 2012

New Horizons

Our first family trip to Baltimore started at 4am last Wednesday (February, 15 2012) morning.  We woke up to get on the road very early so that we wouldn't be arriving in Baltimore too late.  It's a 10 hour drive.  Also, we wanted to stay ahead of a snow storm that would be right behind us all the way.  When you drive from Michigan to Baltimore, MD you drive through Pennsylvania.  If you haven't driven through PA before, you really must.  It is such a gorgeous drive.  I was "privileged" to drive that 5 hour portion of our trip.  It was a little unnerving at times driving down mountains next to Semi-Trucks with signs telling you to take this curve at 50mph.  However, every mountain peak gave beautiful views of new horizons.  For a couple of these hours Brandon and Kilah slept peacefully while I gripped the wheel, shoulders tense, eyes squinted, focused on the road ahead.  How telling.  This tends to be the way I take on life.  Sometimes when I get to the top of one of my life mountains I take a breath, look at the gorgeous view and I realize I have very tired shoulders. :)

We arrived at Sinai Hospital shortly after 5pm.  We spent the evening becoming familiar with our surroundings.  We used an Applebees gift card that was one of our Christmas presents and had a nice dinner.  We stayed at The Hackerman-Patz House directly across from Sinai hospital.  Hackerman-Patz (HP) is a house for patients and their friends/family of Rubin Institute.

If you're interested, here is a video about HP:

Here is a virtual tour, if you would like to see more:

Virtual Tour

Kilah seemed right at home at HP.  Her two favorite things were the chair and ottoman in our room and the shopping cart in the playroom.

Introducing Oatmeal (the monkey).  He was with us for the whole trip.  He even had X-rays done at the same time as Kilah.  He's such a brave little monkey.

Oatmeal needed pigtail bows too.

Our appointment to meet Dr. Standard was at 1pm and check out from HP was Noon so we had a little time to kill...

As you can see; Oatmeal was learning to use a camera.

Our appointment with Dr. Standard went wonderfully. As all of his patients and their parents had told us when they recommended him, we LOVED him.  He took care to spend as much time as we needed and answered all of our questions.  He had a little different plan for Kilah's leg than the previous doctor. The best part of the visit was the way that Kilah enjoyed Dr. Standard.  She was very comfortable with him and was feeding him pretend food (her favorite thing to do) throughout our appointment.  He won her heart as he chomped at her fingers and said, "nom, nom, nom!"   We have decided that we will be using Dr. Standard and Rubin Institute for Advanced Orthopedics (RIAO).

After talking with Dr. Standard we now know that Kilah's Tibia is bowed slightly.  This is common with FH kids.  He explained that his normal procedure is to do bone straightening before attempting to lengthen bones. Also, she will gain a little length by straightening the bone.  Dr. Standard also recommended the "Super Ankle" procedure for Kilah.  This is basically correcting her ankle and putting it in the best position for limb lengthening.  He advised that Kilah undergoes as many surgeries as are deemed necessary and beneficial before the age of 4 to prevent any social and psychological damage.  He said long term memory isn't really developed until after 4.  Developmentally, this is the best choice for Kilah.  Surgery has been set for the first week in October.  We will be staying at HP (we already have it booked).  Kilah will have her tibia straightened and the "Super Ankle" procedure done.   Both of these procedures require fixators, so this will be our warm-up/practice round for limb lengthening.  If everything goes as planned, Kilah will have her first limb lengthening next fall.