Inquiring Minds

We, as a family, are always growing and always learning something new. Yesterday, I learned the sign for weather and about ankle braces. Things I never thought I would have to learn are now things I am most curious to find out. Everyday for our whole lives, we will be learning and adapting to the new normal of what is our lives. I've learned so much medical stuff that I easily have my lpn or cna. Too bad my credentials won't land me a job. There are so many things I am starting to think ahead about. I was talking with our PA and she was mentioning things about how deaf or hard of hearing people can not or have a difficult time when calling into 911 because they can't hear to talk on the phones. How there are relay systems deaf and hard of hearing people have to use when making phone calls. That technology is going to be our best friend when it comes to adapting to Sophia's hearing loss. Who would have thought?! I need to look into things like flashing smoke alarms, light up alarms clocks, flashing doorbells, call systems, etc. Wow, where do I start? Does insurance cover these things? It may be a little down the road but they are in sight. We were even talking about school programs for hard of hearing kids. Are there preschool programs and/or daycare programs for deaf and hard of hearing kids. What types of school will I send her too? So many questions... Right now, we are discussing putting Sophia in an ankle support brace to kick start her walking. She has very low muscle tone and her balance is wobbly. Our PT and doctors believe this will be the ticket to getting to walk quickly. She is cruising all around the furniture but is still too unstable to stand. The doctor said she often puts kids in these types of supports when they are at Sophia's stage and they take off walking in just a few weeks! Ill take that. Sophia will be so fun as a walker:) Currently, I am awaiting the results from the cardiology study. I am assuming at this point no news is good news. Also, we are still in the waits of this sleep study. Things keep pushing us back. I am eager to get on with it but at the same time I know the more time we wait the better chance Sophia may have to succeed. This post is a little rambley but that is often how my mind works these days. One minute I am thinking about what medical supplies we need to order, how does Sophia secretion seem today, what should I make for dinner, I wonder if we can go to the park today, why haven't they called me for the interview yet, I wonder how you say giraffe in sign language, I just wish I could make cookies for Sophia to eat, I wonder when her trach come out, daydream about taking our baby to the beach, remember sand and trachs don't mix or water for that matter, I need a better solution for the bath tub, I wonder if my husband and I can go on a date this month, I should go for a run, run I mean walk, I wonder if Ellen has read my blog, I need to learn to sew and the next minute I am thinking of a new game or activity to do with Sophia. Then I start thinking if I am doing enough for her, what can I be doing better at, are there different exercises to do or toys that will help her learn this or that. It's really a vicious cycle of thoughts in my mind.