My Story

Welcome to our CaringBridge site. It has been created to keep friends and family updated about our loved one Bella. Isabella has been diagnosed with MPS IV or Morquio Syndrome Please read our story and watch our video.


Be sure to read the latest in the journal, view the photo gallery, and drop us a line in the guestbook.

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Journal

Monday, June 22, 2009 12:18 PM, CDT


Sorry that I still haven't updated the pictures.  I promise I will soon.  Bella had a great weekend.  Some of our friends rented a house in NH and invited us up for the weekend with them.  The weather wasn't the greatest but we made the best of it.  The girls did some fishing and caught about 50 trout the 2 days we went fishing.  They both were able to keep 2 each time so both Friday night and Saturday night we had some yummy trout for dinner.  Gabi loved it and Bella tried it both days but wasn't to fond of it.  We also have a huge milestone.  Bella is finally free of her binky!!!  We were all quite shocked.  What happened was Molly the puppy ate what Bella thought was the last one and we didn't tell her any different so since Thursday she has had no binky. She has done so much better than I expected.  She is going to sleep on her own and didn't even ask for it yesterday.  She is truly my big girl now.  So she thinks we need to have a no more binky party.  We just may need to plan that.  She is giving her last 2 binky's that are at Nana's house to her new baby cousin who will arrive in August.  Not that baby Esther will ever use them but it is the thought that counts.  As for medical stuff she is still walking more everyday.  She has PT twice a week still but no other major appointments coming up.  Maybe just a weight check and a nutritionist visit in the next couple weeks.  Otherwise we are going to try to enjoy our summer if the rain ever stops.
Thank you everyone for thinking of us and keeping us in your thoughts and prayers.  We send our love to all!

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ergburton1@yahoo.com

HOSPITAL INFORMATION

Children's Hospital Boston
300 Longwood Avenue
Boston, MA 02115-5737
United States
(617)355-6000