T+1367 Graduation, Gratitude and Gaps

 An update!  Once again I'll try to get caught up before the end of the year! 

Torie had a great year at Preschool, and graduated in May.  She enjoyed making new friends and having something "Just for me to go to." 

We really appreciated the VERY small class size and all the individualized support from her teachers!

On the subject of being appreciative....as most of you know Torie and I go to the hospital once a week for her enzyme infusion or ERT (Enzyme Replacement Therapy).  We go to the Pediatric unit for it, and they access Torie's MediPort, draw labs, and infuse her enzyme.  We're there for about 5 hours every week.  I am so grateful to the Pediatric Nurses at St. Mary's Hospital.  They are so kind and caring and efficient and knowledgeable and competent. 

 Torie is always excited to go to the hospital.  Weird, right?  But the volunteers have a Popcorn machine set up and sell bags of popcorn.  And no one loves popcorn like Torie does!  So it's "Hospital Wednesday, Enzyme Wednesday, Popcorn Wednesday!"  She gets her popcorn, we go to admissions (where they put stickers on her armband and they register her as soon as they hear her voice in the lobby!) and we head up to Peds.  She loves being the Elevator Operator for everyone.  As soon as the doors to Peds open she runs in and says Hi to everyone, usually with hugs.  She has her routine down, and they have all adapted to her way of doing things.  She sits and watches TV while she's accessed, and she tells her nurse, "That didn't hurt at all!"

 I can't imagine how awful it would be to have to come once a week for 2 years if she dreaded it.  I'm not sure I could drag her in kicking and screaming once a week.  But these nurses have made it so easy for Torie and I.  I am so fortunate to call these awesome nurses my colleagues and friends!



Torie has now lost her top 2 teeth and her bottom 2 teeth leading to the "Gaps" portion of this post.  She loved her visits from the Tooth Fairy and she's always checking to see if she has any more loose ones "So I can get some more money!"