Tristan had a great checkup with Dr. Nester last week. His BP's have been perfect, labs looked great, K+ is staying normal even without kaexalayte. Protein has come down a lot in his urine too thanks to Lisinopril. He grew a little over the summer :) I was very proud of him when he sat all by himself and had his labs drawn, all I had to do was hold his hand. Then of course he covered himself in stickers to make the owee better. We call it arm pokey. He knows what to expect now and doesn't freak out so bad. He's been eating more on his own. I only have to bolus him 2 or 3 times a day. He went back to preschool and loves it. Still not potty trained all the way. It's just for me though, they don't use one pull up at school but he seems to think it's fun to pee his pants for mom. Can't wait to meet everyone at the conference in October. Safe travels to you all!
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Comment by Cheryl Biermann on September 17, 2011 at 11:45am
Comment by Dana M Simone on September 16, 2011 at 5:38pm WELCOME - Friends, Family Members, Patients, and Researchers - JOIN US!
The Foundation for Children with Atypical HUS encourages patients and investigators to share information and explore options/resources as we work together to gain insight into this rare complement disorder. By increasing contact opportunities with researchers and medical personnel interested in helping the aHUS community, our stories foster a better understanding of atypical hemolytic uremic syndrome.
Sharing information, inspiration and support for one another, we seek to gather together people and knowledge as we strive to improve the lives of patients and families dealing with a diagnosis of aHUS.
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