This morning we were all out the door early for an 8:00 am meeting with Waverly's school.  We are having her reevaluated by the school.  Currently, she is only classified as "hearing impaired".  That SO does not adequately explain our little girl.  This will help us get her in the best kindergarten placement.  The meeting went really well and I finally feel like Wavey's teacher gets it.  It is so nice.

Then we were all off to Children's Hospital for an appointment with our geneticist/metabolism doctor.  She is amazing!  I love having appointments with her, because she has actually seen another kid with Sanfilippo.  She was able to answer our questions (she really takes time with her patients) and she is going to try to get us in with the physical medicine doctor sooner.  The wait time is currently 4 months.  We also found out that Oliver has an ear infection.  Ugh!  In 2 weeks he is getting tubes...hopefully that will eliminate these.

After dropping Matt off at work and battling the national tree lighting traffic, I got Wavey to school.  Oli and I ran to Target.  We needed to get his prescription filled.  And we needed to get supplies for our trip to Disney World!!!

We are heading to Florida in just a few days and I can't wait!!  Right after we opted not to do the stem cell transplant for Oliver, we decided we needed to take a family vacation.  With the move back to the US and the loss of all of the European travel we were hoping to do, we thought the family deserved a trip.  We have been counting down since July!!  The kids are going to have a ball and we can't wait to watch their little faces light up.  It is going to be a wonderful memory maker.


dawn said…
I don't know you, but I've been reading your blog consistently for quite a while now. I'm also in the DC area, and I think we may even overlap in Disney (I'm going next week). I hope y'all have a fabulous time and create wonderful memories.
Christy said…
Oh I hope you have a really really wonderful trip.
Kregel Family said…
Shannon~ In PA we would probably go with "Other Health Impaired" as a classification... opens the IEP to the services she needs and is much broader in scope. At least that has been my experience at the elementary level with other children who have had rare syndromes that didn't "fit" into the other categories. You are very smart to be this prepared headed into kindergarten. I love Waverly's hair cut short btw:) Glad you got to see D&S over Tgiving!
Anonymous said…
Shannon, I am a longtime childhood friend of Michele's from Valparaiso. She and Mia had shared your story with me. I am also a Pediatirician. My husband, (who is also a Pediatrician), and I read your entire blog the other night all the way through. It took us almost 2 and 1/2 hours. We cried together and laughed together. Thank you so much for sharing your story. You are an amazing advocate and mother for your children. You are in our thoughts and prayers. It sounds like you are surrounded by many wonderful doctors. If you ever need ANYTHING, no matter how small please feel free to email me.
Laura Hollenbeck and Keith Chitty

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