Expectations...

We all have our expectations. We expected going into the sleep study that Sophia probably would not pass the decannulation. However, what kind of mother would I be if I didn't hold onto HOPE for her. We got into the appointment, paper work, talk of game plan, hooked her to wires, pause for breathing treatment... then GO TIME. The doctors had me pull Sophia's trach out because they felt she would be more comfortable having me do it since I am the one who changes her trach most often. I pulled it out and she was fine. That was until they covered her trach stoma with a bandage. Instant terror swept over her little face. She was reaching for me to save her. It wasn't long, mere seconds, that Sophia continued to struggle to breath. She was completely purple, eyes rolling back into her head and the doctor finally said she can't breathe (UH DUH). The doctor reached to pull the adhesive bandage off Sophia's neck and struggled. I reached down and started to pull it off as fast as I could. The instant it was off Sophia drew a deep breath and fell into my arms. I leaned down over the bed and she wrapped her little arm around my arm and fell into my neck. She was squeezing my arm so tight. We both cried. I held her in that awkward embrace for longer than the bandage was on her neck. I tried to readjust once and she grabbed me tighter. I held her until she fell asleep from sheer exhaustion in my arms. It was awful to watch her panic like that. I felt helpless knowing she was fighting to breathe. It was much worse this time than seeing her dip in and out of a blueish state when she was 7 weeks old. Now she was showing pure emotion and fear with the color change. It may have only been seconds but those seconds are engraved in my memory. It may sound strange but seeing her in distress broke my heart, but feeling her need and love for me when she wrapped her arms around me made me feel a feeling that's hard to describe. Selfishly, I was finding just as much comfort in her embrace as I was suppose to be comforting her. The best thing of all is she won't remember a thing about that day. I will carry the mix of those extreme feelings from that day with me always. You break down and get built up all the same. 

So now, we wait..again. The scope has shown no physical blockages in Soph's airway and it remained open during the procedures. However, the doctor said the collapse must still be present and closes when shes panics especially. The only thing we can do is wait for her to grow. The more she grows the larger and stronger the airway will become. They didn't give an estimate as to when they would try again. I am really in no hurry this time around. We go back to the doctor to see pulmonary in July. 

As far as everything else, her eye sight is great, she hears well enough to sign correctly what I ask her to sign, she knows more signs than I can keep count of now, she is recognizing things and people, she is cruising well, and we got fitted for ankle supports. We will pick up the supports next week. Hopefully they will give her the stability to walk by herself. We also see the kidney doctor this month to check on her reflux. All her therapies are going well. She is starting to climb on things now. She gives the best kisses and hugs and she is so loving. She has more personality every day. She is a character. She signs mommy and daddy when she sees us. She points to everything and I have to tell her what it is. Thank goodness for Iphone signing apps. We were at the zoo watching the dolphin show. She was having a blast. We showed her the sign for dolphin and she caught on instantly. This past weekend we were walking around the shopping center outside. She started signing dolphin over and over. I was like yeah dolphin. Then daddy said I wonder why she is signing dolphin. We look around and sure enough, a little girl that walked passed us was holding a stuffed dolphin. It is amazing what she is learning and remembering. She put together from a real dolphin and toy dolphin and signed it correctly from memory. She is my baby genius. So Proud. Being a parent of a child with special needs (I say this loosely) is more rewarding than anything in this world. We struggle more with how people, even people closes to us, handle our situation more than we do. I will save that for another blog. Sophia is our life and no matter the hard times we go through with her at the end of the day, we get the best gift and that is her love.