Monday, June 22, 2009


Sorry it has been so long since I last posted, we have been busy as usual with a few added activities. The Pampered Chef fundraiser party was last Thursday and it was a total success. Along with that and some donations from some truly kind and generous people we raised almost enough money for the conference. I never thought we would come anywhere close to actually paying for the whole trip, all I had hoped for was to maybe cover the cost to get up there and the hotel. We are extremely blessed to have such wonderful people in our lives, I can't thank you all enough!!!

Haley has rolled over a couple more times in the past week and is rolling onto her side at night and sleeping for several hours that way. She took one or two steps with a walker today in therapy. She is starting to make more sounds. Last week she started saying "mmmmmaaa". I'm not sure if she means "ma-ma" or if its just a new sound she has discovered. We are still trying to get her to learn some signs. So far the only one we have tried is "milk". We can do the sign for milk and she will grab her milk cup and drink, but she is not signing it back yet.

We go see Dr. Nelson, her neurologist, tomorrow for a follow up. I'm sure not much will happen at that visit. Hopefully he has researched a little bit more on what JS is and how to help us. I'm not faulting him for not knowing about JS, so far no one we have worked with had ever heard of it, but I would just like to be able to have a real discussion with a medical professional about JS and it not be me explaining it to them. If that makes any sense :) That is partly why I am so excited about the conference. We will be surrounded by people who will know anything and everything about JS.

Sorry, but no pictures this time. I have been really slack with pictures again. But soon, I promise!!!

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