2 Days And Counting

I cannot believe that Christmas is only 2 days away.  I think that I have finally completed all of our shopping and I just need to wrap a few last minute gifts.  We are staying in VA for Christmas and then heading up to PA to be with my family.  I hope the preparations for dinners, guests, presents, and travels are all going well.

I received a really neat gift from the MPS Society today.  It is a binder they created to inform families all about Sanfilippo.  It is incredibly informative.  It also has organizational areas to keep track of doctor visits, procedures, meds, etc.  I am so thankful that this organization exists.  And I am grateful to those of you who have made donations in Waverly & Oliver's honor.  Matt and I hope to have a life long relationship with the MPS Society, working to raise money and to be a resource for other families effected by MPS.

I also just received a call that we are moving onto the next step in receiving our EDCD waiver.  This will assist us with respite care and secondary insurance.  I am so happy to live in a state with this program.  Hopefully we will be granted the waiver for both kids within the next few months.


Anonymous said…
Merry Christmas to you all. And thank you, Shannon, for being a positive influence in my life this year.
erin heiser said…
All good news! Safe travels and happy holidays. love you!
Jan said…
What a help that will be for you all. I have a child with Down syndrome and numerous medical needs and a notebook like that is invaluable.

Merry Christmas!

(p.s. I am a friend of your sister)

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