Friday, November 5, 2010

A Little Late....

Wow! So much has been going on. I guess I have been a little neglectful to this blog. We have sailed right through summer and now I am hearing Christmas songs in stores. I will try to catch everyone up but I am sure I will leave some things out. We had a great summer. I enjoyed every minute I got to spend with our little girl. We had a couple of great beach trips thrown in. We got so many great pictures of Emma enjoying her wagon on the beach. I hope that next year we have pictures of her running on the beach. We shall see! The Anat Baniel Therapy has been going great. I have noticed so many differences. Emma was never really transitioning into and out of sitting until we started this therapy. Now I am happy to announce that the baby proofing has begun! Emma is pulling up, cruising furniture, and can beat me in an army crawl across the room. Still not putting her hands down to crawl but she gets where she needs to go. She also is doing well pushing her walker around the house.

We have continued to work on the Alphabet Therapy with Emma. She really has done well with that. I think I mentioned in an earlier post that she has learned to identify her colors. We are working on shapes now. I am in awe at our sweet girl. She knows so much! She is showing me everyday how much she really does understand. How incredibly frustrating it must be to understand what people are saying, to have your own thoughts and feelings, but have a body that does not cooperate in sharing them. We will go in January to see a specialist who will advise us into which augmentative communication device will be best for Emma. Until then, we continue to work on using picture cards for communication.

Well our first Fall Fundraiser to benefit Angelman Syndrome, was held last weekend. It was so much fun and I am extremely happy that we things went so smoothly. We raised almost 3,000 dollars for research. A huge thank you to our wonderful friends and family that worked so hard to help the day become a success and to everyone that joined us for our first festival. We would never have been able to do it without you! We love you all very much!
We are going to take a little fundraising break before we start planning for our golf tournament in the spring.

Brian, Emma, and I are headed to Nashville this week. We have enrolled Emma in the Natural History Project at Vanderbilt University. She will see some of the top neurologists and geneticists associated with Angelman Syndrome. I am looking forward to spending some much needed time with my family. I hope that one day we will make this trip to start Emma in some sort of clinical trial for a treatment for AS. I think about this every day and will never give up hope that the day will come. One of our many dreams for Emma is that she will one day be able to say the many things on her mind including a thank you to all that have supported her.


  1. Great job Sweet Jessie! I am even more behind in posting than you! How I wish I could join you guys next week in Nashville! You will LOVE the experience (minus this icky EEG). Soooo proud to have you as a friend! Congrats on the fall festival! It is sure to grow each year! Hopefully we can attend it as well in the future! Miss you guys!

  2. It is a noble journey you travel. Nicolas, Lise, and my three sons wish you all the best, and yes keep the hope for although our Angel is in his thirties, he has touched many people with his smile. The road has been bumpy but we always had friends along the way. Bless your family and hope to hear from you again.