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.