May, June, July Oh My

Sorry it has been so long since the last post. So much (all good!) has happened since the last post that I almost don't know where to begin. The end of April brought Katie's 8th Birthday and the end of May brought Amanda's 3rd birthday. Both girls enjoyed their birthdays and Amanda decided she really likes to eat cake. June brought horse camp for Katie, the addition of another horse to our family ( yes that makes 3), the hope of another 4 legged addition to our family (more on that in a minute), MSA Graduation (with an amazing gift), and our annual trek to California for Amanda's check-up at UCLA. July brought our return to Wilmington from California, another horse camp, some R&R, and soon another trip. So I guess we should fill in a few of the details....

Katie had her 8 year old birthday party at Hanover Stables where we are lucky enough to board our herd. She had a bunch of friends come for pony rides, horse rides, pin the tail on the donkey, pizza, and cake. It was a bunch of fun.

Amanda had a family birthday at home and enjoyed the cake and presents. She got several new toys that make sound (always a favorite) and got a real sugar high from the cake.

Katie and her best friend, Tyler, did horse camp for 3 weeks this summer and Mommy helped work at it. The girls had a fun time together riding, doing crafts, swimming, and learning all about horses. The best camp was the third camp because the barn's new trainer was there to lead the fun in horseback games and vaulting (see picture of Katie standing on a horse). Amanda loved the activities too, particularly swimming in her little pool. During the second summer camp, we took a field trip and fell in love with a miniature horse that we named Mini Cooper. He pulls a cart and his picture (as well as other pictures of Katie and Hanover Stables) can be accessed at www. hanoverstables.com. Amanda continues to enjoy her horses both through therapeutic riding and now driving with Mini Cooper. Katie & Tyler seem to enjoy that as well.

We also learned in June that Amanda had been approved to receive a service dog through a wonderful organization called Paws4People. We get to go up to West Virginia in August to meet Amanda's dog. He or she is being trained in a women's prison and will graduate and come to live with us in August of 2008 if all goes as planned. It has been such a rewarding experience to get to know the amazing people behind this organization and we look forward to the opportunities that lie ahead for Amanda. We will be posting more information about the dog and our publicity and fundraising efforts to help cover his training costs in the near future.

At the end of June, Dan stepped down from his role as MSA Director, and we got a touching gift from the MSA (Masters of Science in Accountancy) Class of 2007. As their class gift, they decided to raise money for our foundation, the Infantile Spasms Foundation, Inc., that we have established to help find a cause and cure for Infantile Spasms so that future children that get diagosed with this disease will have a better prognosis and better treatments available to them. We have a preliminary website up at http://www.infantilespasmsfoundation.org/ but we will be creating a comprehensive site during the fall with the help of UNCW students. The MSA class raised over $5,000 and also helped us to get up and running on Quickbooks, created a database for us, and purchased 60 teddy bears on our behalf bearing the foundation name. We were left speechless at the graduation ceremony where many of these gifts were presented. What more perfect evidence could you ask for that there are many great people out there in the world who care about others and want to make the world a better place. We are so blessed to have many such people in our lives adn in our MSA program at UNCW.

Our trip to California went really well. We spent the first part in Westwood so that Amanda could get checked out at UCLA. Everything went well in the appointments and we have already weaned one of Amanda's medicines down by 50% and will be off it totally in the next month. The doctors were optimistic about her potential as she is showing some good coginitive and physical gains. After Westwood (near LA), we spent a week in San Diego. What a beautiful city! We saw lots of sights (seals at the LaJolla Cove, Old Town, the Animal Park, the Zoo, Coronado, etc) and had lots of fun. Amanda just loved California with the dry weather and constant barometric pressure. She was in a great mood the whole time! In terms of her progress, she is doing quite well. She is following commands pretty well and doing lots of age appropriate things (shyness with strangers, temper tantrums to get her way etc). She is tons of of fun and we are blessed that she has a wonderful big sister who loves to play and interact with her.

Today, Amanda received her new walker and wheelchair and they were both a hit. She couldn't quit smiling. The walker gives her some pelvice support and she seems excited about walking with it. We will be headed to Florida soon and will take along these items so that she can get really good on them while we are gone and impress the therapists when we get back. Soon after we get back, all of Amanda's therapists will change as the early intervention therapists are replaced by school based therapists. It will be a big change but the new therapists seem well equipped and excited about their new charge.

So things have been crazy busy this summer and tons of fun as well. Thanks for your continued prayers and support. Amanda has been seizure free since surgery other than the one isolated episode discussed in the last posting. She is such a blessing in our lives and we are thrilled that she is doing so well. God Bless!

Susan