It’s been a while since I shared a progress note about Sophie with you so this is my first 2013 update. I wanted to share all the new and wonderful things she has learned to do, I’ve included a few videos where I was able to capture her in action. I wish I could take videos of her all day everyday because she does something new almost everyday but as most parents know you can’t grab the camera fast enough to get it all on video.
Sophie has blossomed developmentally since we moved to North Carolina. Maybe it was the tense atmosphere she was sensing before our move here, the previous chapter of our lives in Florida was a difficult one and brought with it alot of stress. Maybe it’s just her natural progression or maybe it has something to do with her being stronger, whatever it may be I am grateful for the progress. Although she is still always sick it’s not nearly as bad as it was while we lived in Florida. She has gained weight and most importantly kept it on, she is now weighing over 28 lbs, that is HUGE for us!
Sophie has begun to spread her fingers apart, pick up small objects like refrigerator magnets and reattached them to the refrigerator. She has been isolating her index finger to use her IPAD when I hold her wrist to help guid her. She is now moving from raking with her hands to actually using her fingers functionally. She is so determined she amazes me everyday! I can’t believe I ever doubted her, shame on me.
Cri du Chat Syndrome has a huge effect with the ability to develop speech combine this with moderate/severe sensorineural bilateral hearing loss and you expect to have a nonverbal child. I never thought I would hear Sophie put sounds together….Are you READY? Sophie has begun to say momma!!!!! I thought I was going to die the first time I heard her, it was the most amazing moment! Hearing her was more precious than I could have ever imagined. She is trying really hard on other sounds but it’s very difficult for her, we are also using speech cues to help her differentiate the M, B & P sounds. She has begun to babble in what seems like gibberish. The ST told me this is next step in speech development (there are so many) I am excited knowing she is slowly but surely progressing in the right direction.
Sophie has passed 36 inches in height, she is very long and slender her arms are super long so there is no escaping her path. She has now mastered the art of terrorizing me in the kitchen, reaching for the stove when I’m cooking, taking dishes out of the sink and flinging them across the room and she can now get into the drawers. Child locks can only do so much as I have learned and there is not much that is “Sophie Proof”. Sophie has also learned to open and close doors, yep, I’m in trouble now!! This video was taken the first week she began to open doors, she has now mastered it and her little copy cat brother just followed her lead. Double trouble!!
Sophie can now sign eat, more, out and all done but her comprehension is amazing. She understands pretty much everything I tell her and also understands over twenty to thirty signs. Sign language has been such a blessing for us! While she still needs her strings to calm her it’s not needed as much anymore, I have also started working on are working on using vocalizing to redirect behaviours and to help self calm. She is participating in so much of our everyday life including appropriate play. She is determined and never stops trying, I am so grateful!
Sophie now tries to participate in daily functions like dressing herself; she lifts her legs and arms to help dress herself. She will try to help me brush her teeth although I have to sing through the whole thing otherwise she will fight me, on bad days and nothing works and I have to hold her down. It’s easier just to make up my silly songs, we are alone after all it’s not like I’m embarrassing myself. She also tries to brush her hair and sometimes allows me to style her hair without a deathly battle. She is a tough cookie! While she still has a very long road ahead of her before as she learns to eat she is progressing. For her safety she is primarily on puree and Pediasure, she does love rice and ramen noodles but her ST really does not want her eating it for fear of aspirating.
There really is so much she is learning on a daily basis. She is definitely not a baby anymore. And while she needs assistance for daily functions as a baby would, she is definitely a toddler. My goal is to help her learn and be as independent as possible. Her happiness is really whats most important to me! To my amazing little girl…Mommy loves you, never give up you are truly my inspiration!