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.


Comments

Anonymous saidā€¦
Merry Christmas to you all. And thank you, Shannon, for being a positive influence in my life this year.
erin heiser saidā€¦
All good news! Safe travels and happy holidays. love you!
Anonymous saidā€¦
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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