Pray for Sophia Day

On Wednesday, May 29 Sophia will be admitted to the hospital around 9 am for her first attempt in pulling her trach for permanent removal. Sophia has reached the point in which doctors feel comfortable in starting the decanulation process. We have a 50/50 percent chance of succeeding or failing. The process will consist of a sleep study with her trach out in which they will pull her trach, cover her stoma, and connect her to many monitors. She could and most likely will not pass on her first attempt at decannulating. The doctors are optimistic that she is ready to TRY. This is either going to be a quick day or a long anxious day. This could be a ugh there is always next time kinda day or this could be a take your breath away kinda miracle day. All we can do is pray. Believe in miracles. And allow our hearts to fill with hope. I am going to try and mask my self in courage and a shield of self awareness so not to be overwhelm with despair or heartache if she does not pass this time. I will keep my heart open for possibilities. So I am asking, that on May 29th for you all to keep Sophia in your prayers throughout the entire day. She is a little girl who deserves big amazing things.

I Don't Say It Enough!

I really don't say it enough but I am so so lucky to have Sophia as my daughter. I am so lucky to be her mother. I grow each day as she does. I learn to see the world with my generous and wondering eyes. Simply watching her play, gives me great joy. She is learning so much daily. She is so smart. She knows more signs than I can count, learned to ride her car, and just yesterday she learned A B C in sign letters. Sophia is more than just smart. She is so sweet. She shows love so purely. I was getting frustrated last night because it was well past bedtime and she was refusing to sleep. She would fall asleep and as soon as I laid her in her bed she would be awake. I picked her up for the 4 or 5th time after having her asleep and said now Soph this needs to stop and then she just wrapped both of her arms right around my neck and hung there tightly. Melted my heart. I quickly realized that it is in those late nights, I can be overwhelmed with true love.....


I have so much love for Sophia. I have so much love for my husband. Watching her love Sophia so much as made me love him even that much more. So if I haven't said it enough, I am so blessed beyond belief to have them both. I draw strength from them daily. We may have hard days and nights, but they are getting easier. Rough days make the good ones even more sweet. This weekend we went on our first family venture to the zoo. It was a success. We went into the dolphin show. They don't allow strollers but because we have it packed full of her gear we asked if we could bring it with us. They put out chairs for us in the front of the bleachers. Sophia was a hoot. She was smiling and waving at the crowd. When the music started for the show, she began clapping and watching. It literally brought tears to my eyes knowing the pure joy she was having. I can not wait to create more of those memories with her and the hubs. We are better people because of Sophia. She lights our world.

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.