Today was a wonderful day as far as feeling accomplished. We have been longing for a parents support group locally to have someone to talk to or even just understand where we are in our lives with all of Emily's Kidney disease and the life that it brings with it. I have been talking with our social worker in the Nephrology Clinic about it and today I met with the National Kidney Foundation for the first time to talk about the need for this group.
The meeting went great. They were very much on board, and are willing to help us set up a parents support group all the way down to helping to create a blog AND back it up with finances. Since March is National Kidney Disease awareness month we are going to have our first meeting here in Rochester on March 18!
It is still so unbelieveable that we are finally going to be able to connect with other Kidney parents who know what it is like. We will have someone to relate to and connect with. It is so wonderful that it almost brings tears of relief.
The best part of the whole thing is that they have asked us to help run it! They even offered Patch Adams to come as a speaker for a summer picnic. The ideas are endless, now it is just time to put it into effect.
On our home note...Emmy seems to be holding her own. She is still very "puffy", and has been up at night quite a bit. We are just watching her and holding our own to hopefully get to Boston next week.
Last night Emmy and Mommy made Valentines Day cookies, and tonight we Frosted them. Emily had a blast. I think that she ate more frosting then she put on the cookies. We have pictures...as soon as I figure out how to post them I will put them up.
Hoping everyone is having a wonderful evening.
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