Meeting with the National Kidney Foundation

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.

A weekend at home

Well it took more then a few days to get things up and going. But hey that is how things go here. What is up and new here?... Not much we are holding steady. Emily is some what the same. She has her good days and her bad, but we are making it through.

Ryan and I are working on cleaning out the house this winter. And yup it is massive cleaning. We are settling to one room a week to clean from top to bottom. It feels great when it is done, but it does make the other rooms we have not touched yet a complete mess! I am sure that we will have an entire truck load for Good will. How much junk can you accumulate in just 6 years!

This weekend has been good we had a family outing on Saturday to the YMCA. We took Emily swimming. She loves it, but we are limited on the times we can go when her mediport is accessed. It was so much fun. We have forgotten what it is like to just hang out and be a family. We are hoping to take her out sledding in the backyard this week if it gets to be a bit warmer for her to actually enjoy it. So keep your eyes out for Emmy's first snow man in the front yard!

Hope that everyone is having a great weekend. Mommy is off to make Muffins again with Emily.