Ali has started a program at the special need preschool here in our small town. She is attending 4 days a week for an hour and a half and the program lasts for 6 weeks. What an incredible opportunity! Ali is nearing the end of her second week and she is loving it! She is amazing. Each day when we go in to the school to drop her off, we hang her jacket up in her locker, put on her indoor shoes and AFOs and put her in her little walker. She usually gives me a big smile and off she goes to have fun! She is so social and so happy and she loves a challenge! Today when we picked her up, we were presented with a list of words that Ali had been saying in her own Ali way! She said “mi” (milk),” kuchi” (kitchen), up, “ba” (bye),”booka” (book), “ puh” (princess) and a few others. That is amazing progress for Ali! She is so desperate to communicate! I can’t imagine having so much to say and having the people around me not understand. It must feel very isolating. She does sign but it’s hard for people that don’t know her well to understand her signs because she adapts them to suit her fine motor skills. I can carry on a really good conversation with her, I feel like I totally understand her signs and her babble but I’m sure she would like other people to understand her as well. We were also told today that her walking is coming along fabulously. Her OT hasn’t worked with her in a while and she was very encouraged by Ali’s progress since she last saw her. I’m excited to see what the next 4 weeks hold for Ali!
Recently we saw Ali’s pediatrician and he was also thrilled with her progress! He told me again that he really hadn’t thought that she’d do this well. I mentioned a few issues that we are having with her (such as Ali launching herself off the furniture, falling on her head while trying to walk and constant unsuccessful attempts to CLIMB onto the coffee tables) and he pointed out that these issues were coming up because she’s smarter than we expected. He seemed quite impressed that I would have these issues at all right now! So I guess regardless of the fact that her poor head is taking a huge beating, it’s great that she wants to try new things?????
So that it’s for my update! Ali is doing amazingly well. She is a happy, social, courageous (and stubborn) little girl and she amazes us at every turn! All her medical issues are stable at this point, tumor screening is next Monday and then we are hoping to take July and August off from medical appointments and enjoy our summer. We will happily return to our busy schedule in September!
