Merry Christmas, friends and family! It’s been a busy year, but definitely calmer than last year at this time. With Annie’s 6 week hospitalization and major health issues just over a year ago, we didn’t get the chance to write a Christmas letter. This Christmas season we are so grateful and feel so blessed to have our family all together and have a period of relative health.
Lexie just turned 4 and started a special preschool this year for children with speech problems. She continues to receive her private speech therapy once a week, but now she also gets to be in a preschool setting to work on group language skills. She has made tremendous progress this year and her therapists now consider Lexie to be age-appropriate in her language and speech! For several months, Lexie has shown extreme light sensitivity, to the point where even the bathroom light was too bright for her. We took her to the ophthalmologist and have learned that Lexie most likely has a degenerative corneal disease. After lengthy treatments of antibiotics and steroid ointments, she is currently only on eye drops. We’ll return to the doctor soon to learn what kind of chronic treatment will be needed to maintain her vision.
Molly is in the 1st grade and loves school. She loves reading and has recently started gaining interest in chapter books. She’s read the entire Junie B. Jones series and continues to read about 4 chapter books a week! This year was exciting for her because she lost her very first tooth! Sadly, however, the tooth fairy was so busy at that time, that she came a day late! Thankfully, Molly was very understanding. Molly has the typical “oldest child” personality, and is a great helper around the house, especially with Annie and Lexie. She’s very responsible and probably does more for herself and her sisters than a typical 6 year old should!
Annie is currently in the 4th grade and loves school. This year she has started using a Dynavox Eye Gaze communication computer that detects where she looks on the screen. This allows her to make her own choices, have a voice of her own, and participate more in her classroom with her peers. We are so grateful that she is surrounded by friends and teachers in her classroom who adore her and make sure she is included!
After Annie’s hospitalization last year with complications from a c-diff infection, she was diagnosed with ulcerative colitis. Because of that, she now requires a new special formula and medications that she’ll probably take the rest of her life. This past year Annie did have two flare-ups requiring pretty strong steroids, but she is currently in remission now. If she has another flare-up within the next 4 months, the doctor expects her to require a chemotherapy drug to maintain her colon health. This past year Annie has also had 3 surgeries on her salivary glands. The first two procedures took place in Ohio in March and June, where a doctor injected an alcohol solution to kill 4 of her 6 glands. This past November, due to complications, we were left with no choice but to have her glands removed. Annie was very blessed with a fast recovery and is now doing much better. She is an absolute joy and we love her so much! (To learn more about Annie's diagnosis and medical challenges, please visit
Annie's Story page or
FAQ page.)
Jodi continues to enjoy staying at home with the kids, but this year she also officially launched her own
photography business. She’s had a lot of fun doing sessions for clients and loves having a creative outlet. Jodi also has been busy serving a two-year term on the
Aicardi Syndrome Foundation planning committee for the next family conference in the summer of 2012. She's been helping to get professional speakers and organize agenda details for the fabulous weekend when over 100 Aicardi families will reunite. It’s been a blessing to have closer associations with her Aicardi friends while serving on this committee, and to be of service to such a wonderful organization. Jodi loves reading in her spare time and enjoys organizing and managing a monthly
book group. Jodi also continues to serve in their
church as the secretary for the children’s organization and as the church choir pianist, and has enjoyed writing some original music compositions for this year's Christmas program.
Justin has had a busy year at Creighton University. He continues to teach Pharmacokinetics where he often makes his students cry. He’s an excellent professor that the students really do love, but he does teach one of the most difficult classes in the pharmacy program. He’s had several other smaller teaching assignments throughout the year, and continues to serve on several committees, all while working on research too. His first graduate student graduated this year, and he continues to work with 3 others. We are excited for his tenure review coming up in just a couple more years. At home, Justin loves relaxing with a book or video game and has recently taken a stronger interest in woodworking. He also continues to serve as the president of the 12-17 year old boys group in our
church.
Many thanks to all our extended family, our Aicardi Syndrome family, and other friends who continue to be such a strong support to our family. We have very much appreciated all your thoughts and prayers, especially on behalf of Annie. We feel peace, comfort, and joy from our knowledge of the gospel of Jesus Christ and look forward to this season to remember Him and His birth. We love you and wish each of you a very merry Christmas!
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