I am having one of those weeks were I just have to stop and say, "Wow, God has given me an amazing daughter!" She is special beyond measure and without hesitation. Without trying she makes you realize the important things in life and what not to take for granted. There are those days when I let the chatter in my head become louder than the wisdom in my heart. Those days I just put hand to heart and smile knowing this is my life and this is the only life we get! I am blessed to have Sophia be my life. To be my life changing forever changing part of my life. This week I just am in awe of her. She is showing us new tricks everyday this week. She can sign and point out almost every animal in her animal book. She practically knows her whole alphabet, recognizing and signing. She Knows 17 of the 26 letter by name, sign, and picture. Yesterday, I tried tricking her and asked her where "W' was and sure enough she pointed it out and signed it first try. Then Monday, she impressed us all with walking from her bedroom to the living room without any help. BUT she didn't stop there.. yesterday at trunk or treat she insisted she wanted to walk around. She started walking holding our hand and then she pulled herself free and literally took off. WALKING all around the gym BY HERSELF! WHHHAAAAATT! I couldn't believe it. Normally, she had just been walking as long as she had a destination or something to stop her. Last night she just went for it. It was so awesome. I think it safe to say we officially have a walker!!! She still has balance issues and finds it hard to stand still and stop in place. She still stumbles a lot . The important thing is she's UP and going. My goal was for her to walk by her second birthday. I think we are well in range for that to happen. It is happening. The more she becomes comfortable on her own to feet the better. We have balance issues because of her CHARGE syndrome and that is keeping her from standing still. Its fun to watch her learn to walk. I still get nervous and fall close behind because more than likely the only way she stops is to fall or walk into something to catch her. Hopefully the standing and stillness will come soon. She needs that for protection when she walks. I am just so amazed with her. The average age for a child with CHARGE to walk is between 3-5 years of age. So, she really is ahead of the bell curve compared to her peers and not her "peers". (did you get it). It really is the little things. Sophia is still not eating by mouth (that is our next dream-GOAL). However, Sophia has such a hunger for life she is now pretending to eat when we eat in front of her. Its kinda cute (kinda sad because I know she really wants too). I let her hold food and she puts it to her mouth and pretends to chew. Its adorable. Really its good practice too. Its also a great sign that she does not have any aversions to it. We have a swallow study mid-month. It would be amazing to hear different outcomes and have the green light to practice feeding her again. Another little thing Sophia has started doing lately is something many of you may have never thought about but is so exciting for me. Sophia will now hold her head back for me in the bathtub when I rinse her hair. This is HUGE for me because it caused so much stress when giving her a bath because of her trach. Sophia couldn't for the longest time hold her head back and this would cause drips to run into her trach which caused coughing fits which caused mommy to stress about aspiration which caused for quick bath times. Now, She leans her head all the way back for me and I can rinse her with a little more ease. I still need to find another nonslip seat of some kind for her because she is growing out of her baby bath with the raised seat thingy. Also, thank you to helpful donations we are going to be able to get Sophia her Ipad and start practicing her with the communication apps. Its going to be exciting. Sophia truly makes great strides everyday. It is wonderful watching her grow. As far as all other doctors and appointments we are just into routine check ups for now. She is still followed very closely. In face Sophia, is so use to nurses and doctors she now knows how all the medical instruments are used and practices them on us lol. She is just a great little girl!
(video to follow)
