Hello,
Just thought I would give a quick update.  It has been awhile which is good! 

Belle had her flexion/extention spinal xrays at CNMC last week and it appears that she has healed beautifully following the spinal decompression and fusion. Great news!  We are still on schedule to see Dr. Mackenzie and Dr. Bober at Dupont Hospital in DE on Sept 3 for her orthopedic exam and genetics visit.   

As for other issues, Belle has begun to complain a bit more about pain her legs and knees.  I also notice that after a long day she just seems to waddle about more.  However, not so much that she can't still have fun.  I imagine that her knees will continue to become a problem and we will just have to deal with that as it happens.

According to her pediatrician, her growth has slowed over the past year.  She did grow one inch from 2-3 years old which is slightly below the average 2-3 inches.  This is to be expected with Morquio.  I know I should not be phased by this but it still breaks my heart.  I can't help myself from hoping that maybe it won't be as bad as we have been told.

On a much happier note...Belle is the BEST big sister ever!  She is precious with her little sister Madeline.  Yesterday, I was totally crunched with time and Madeline was screaming in her swing.  I just couldn't get to Madeline to calm her immediately.  Then I notice that Madeline has suddenly stopped screaming.  I rush into the room to check and there is Annabelle sitting next to her, singing to her "twinkle, twinkle little star" and she has piled up about 5-6 toys on Madelines lap in the swing.  Madeline had a HUGE happy grin on her face.  ohhhh...those sweet moments I get to witness being a mom.  I wouldn't give it up for the world!

I would also like to send a little prayer request out to all our friends and family.  We have a dear friend with a baby in the NICU.  Please share a prayer of hope and love for Heather and her family through this very difficult time.

Thanks! 
Stephanie