I have created a website for Lily because of all the interest we have had over the past month from many people we don't even know. Many people are also anxious to know what they can do to help us. At this time, small cash donations would be the best help with all of the expense of traveling and staying at the Cleveland Clinic.
Lily is doing about the same and they are still planning on her heart catheterization for Monday. Kim and I are trying to spend some quality time with Gwyneth this weekend.
1 comment:
Hello Kim and Bill, My name is Joyce and I am Sarah's mom. I have just been reading your blog from the begining and following the story of your sweet Lily.
It brings back such a rush of memories for me as our Sarah too had heart surgery at the Cleveland Clinic and like Lily had many complications. We went back and forth between PICU and Step Down for almost three months. She came home twice and within a few days had to go back for month stays each time. The staff on M-33 became our close friends and the parent lounge was like our personal living room.
Our Sarah is also the second child, her brother just eighteen months older. I remember the strain of trying to balance time with him yet not wanting to leave the hospital for fear something would change in our absence.
If you look at Sarah's blog you can see that she overcame most of her medical hurdles. The purpose of her blog is to give a glimpse to younger families of what life can be like for a teenager with Down syndrome.
We also have been linking to sites which you can see on the left hand column, of many families with young babies and toddlers who are in the same position you are. I think sometmes it helps to realize you are not in this alone and all of these families are so supportive. I wish we had this resource when Sarah was little.
We will add Lily to our special thoughts and prayers. I so hope you are able to get home by Christmas. Hugs to both of you as you continue this journey.
Post a Comment