Bitter Sweet

This has been a long time coming... I have been waiting, longing to hear something since long before December 27th came around last year. I remember laying on the surgery table in OR waiting in anticipation for it and listening ever so closely for it. Knowing in that moment something wasn't quite right when that sound was missing. My heart rate literally dropped. The nurse had to give me something to keep from passing out. As my husband kept giving me the thumbs up, that lingering fear grow louder as the sound of my baby cry grew silent. I have spent many nights wondering if I would ever hear Sophia cry. Her silences began to speak volumes. Her expressions and silent cry were almost deafening. Heartbreaking. I became to except there would be no sounds. I became to take joy in her many facial expressions. I began picking up on every little sound and hum and ding and beep of her alarms and vent and monitors. Those sounds became Sophia's cry. Those sounds became comforting. August, 17th 2012, almost 8 months after Sophia was born I received a bitter sweet gift. I had just left my house to head to the grocery store when I received a text from my nurse reading I have a sweet video to show you that involves precious little sounds. Instant tears streamed down my face at the grocery. A nervous excitement in my gut. A bitter sweet mix of emotions that it happened and it happened when I wasn't home. I have been longing, NEEDING to hear her cry to know that her voice was inside her. I rushed home. Thank GOD for video cameras...for it allowed me to rejoice in the splendid few seconds my daughter cried a sweet sweet cry. Tears of joy, of shock, of hope, of pride and of awe ran down my face. It seemed like a different baby. To watch on a video a baby cry that I have rocked and loved since birth in a blissful silence, CRY. Her tiny little cry could move mountains. It moved this mommy. It moved her whole family to tears. For 8 months, I dreamed of a day that my baby may speak or cry. 8 months may seem like forever, but to know now that I won't be waiting forever is a miracle. Sophia cried. Sophia found her voice. I have yet to hear her cry in person and she has yet to cry again but I know and the world knows that Sophia Kay Rhodes has a voice and she will let the world know it someday. Until the day I can hear that sweet sound again, I will cherish that 13 second video, that gift... for life.

Bragging Rights

Wow, Sophia has been on a roll this past week or so. Literally on a ROLL. She is easily and with such grace rolling herself from tummy to back and back to tummy and side to side. She is on the move. She has amazed me with how much and how fast she grows in develops in such a short time. For being bed stricken for 4 and 1/2 months, in less that that amount of time she is catching up and making progress so well. Week to week her therapist is impressed with the new things she has been learning. Soph is literally on the move. I have been just cracking up watching her go this past week. She has even learned to scoot on her bottom like a little crab. Hilarious! And it works. She scooted like that from on end of the living room to the other. She is trying with all her might to scoot on her tummy but she has some snags. I am assuming the gtube on her belly doesn't feel so well being scooted and tugged across the floor. I with no hesitation believe she will figure that out to. She is smart, I tell you what. She is also standing with assistance and she can sit by herself for short periods of time. Today, she even stood and held herself up against the couch. I put her there but she stayed there. I would just like to say, YES I am most certainly bragging about my baby girl but I would also like to say her and I both deserve these moments of triumph and ridiculous joy! She is just a rock star and I couldn't be more proud as her mommy. I just can't wait to see what the next couple of weeks bring with her development. Almost 8 months now, I'd say she isn't too far behind her age. Still working towards goals but we will get them no matter the time or distance. It is just so great to see her rolling around free of tubes and wires. I didn't think I would ever see this day any time soon. It is a proud and beautiful moment to sit and watch her play and be FREE. Awwww those little moments are so powerful and meaningful to us. More now than had we not been chosen to go down the path we are on today.

Sophia has, per usual, been busy. Busy growing and busy seeing doctors. We finally got word we will be going back into the OR on Sept 19th. She will be put under for nearly two hours to have her hearing tested as well as her airways checked. They may possibly dilate her nasal passage ways at this time. UGh.

We will get through this. Also, we had our Not-so-much-sleep-SLEEP STUDY. Sleep studies are a joke. How on God's green earth is one suppose to sleep through a sleep study with their ENTIRE head wrapped and covered in electrodes and wires and goo. She had a bajillion wires coming from her head, braces and wires around her chest and tummy and leads on her legs and arms. Needless to say, with the lights and beepings and wires, neither baby nor mommy got any sleep. At 5:45 am, the nurse returned and said do you think your child had a normal sleep. UM, NO WAY. Normal sleep to Sophia is down for bed about 8pm and awake around 730am. I have a GREAT sleeping baby. The sleep study was far from GREAT. Needless to say yet again, we have to remain on the vent settings and with oxygen for the next 3 months when we get to have a repeat of this wondrous occasion. I wonder if Daddy knows it's his turn for the sleep study next...hmm. As far as all other health concerns, we have NONE at this time. I think we have some allergies because we developed an yucky cough last weekend. Luckily we are moving past that. All else is on the up and up and UP is where we'd like to keep it, thank you. So for the month of August, we have been doing great. On the 16th of this month we will have officially been home for 4 months. So are slowly but steadily racking up more days at home than spent at Riley. We had a short lapse back in June when we stayed in the hospital for 5 days but since then we are still climbing forward. Choosing to stay home and care for Sophia has been on the most difficult and yet enriching decisions I have ever made. I am so grateful to my husband for abling me to stay home with Sophia to be able to be with her through all her doctors visits and therapies and to help her grow and develop. It is a true blessing and joy to bond with her and watch her improve daily. My heart would break to not be here with her. Though things are challenging at times the reward of seeing her grow out weighs all other odds. Go Sophia Go!

Funny Baby