Signing Time with Sophia

Rainbows and Cupcakes

It is not always rainbows and cupcakes, some days are blessings in disguise. I swear suction is going to be the death of me somedays. It's nonstop. Now add a sickly baby into the mix. I can only imagine that seeing/ hearing any baby with a cough is horrible, now add a trach into the mix. Sophia's coughing can be so hard that it causes her trach to bleed. That is a scary sight. This coughing only increases the ever constant suctioning. Do you know how awful it is to hear that cough- a coarse, strained cough being pushed through a straw in her airway, it's heartbreaking. Can you imagine seeing your baby cry, tears coming from their eyes, streaming down her red/purplish face from straining so hard, but never hearing a sound. It is the most deafening silence I have ever experienced. To watch her cry and hear no sound. I have tried to stay upbeat in my blogs because in most days I really do see the goodness in my life; however, there are days when you think hard enough and it becomes too much, too serious. I guess for those whom read this blog, the reality is that some days are exhausting and stressful. It is reality. It is okay. I do not need pity. I am just sharing the good bad and the wonderfully ugly. I have yet to have a sound nights sleep. I am up and down several times a night. Answering alarms, adjusting and reconnecting wires and tubes, waking out of sheer worry when things are too quite for too long. It's my life. Welcome to parenthood, yes welcome to parenthood where your child is trached and on oxygen and needs almost 24 hour a day suctioning. Yes, welcome to parenthood.


Tomorrow there will be rainbows. Tomorrow will someone bring me a cupcake. A chocolate cupcake!

VS.

C: Colobomas- black spots on the eyes or clefts, vision issues and loss

H: Heart Defeat- Can be any type (Sophia has a bicuspid aortic valve), but many are complex, such as tetralogy of Fallot.

A: Atersia- The choanae are the passages that go from the back of the nose to the throat. They can be narrow (stenosis) or blocked (atresia).

R: Retardation of Growth- Growth hormone deficiency, short stature

G: Genital- kidney and urinary abnormalities, hydronophrosis and kidney reflux

E- Ears- Malformed cochlea defect; small or absent semicircular canals: CAUSE HEARING LOSS AND BALANCE PROBLEMS

vs.

S: Special- unique onto the world, a gift
O: Optimism- the courage to see the good and strive for more

P: Perfectly Proud- a shield of honor and pride, Proud to be ME 

H: Healing Hearts and Hope- A Heart that gives and grows; Healing the mind, body and soul. Giver of Hope

I: Innocently Incredible- Words cannot describe the humble beauty that is YOU
A: Amazing- simply amazing

I often do not mentally associate Sophia with having CHARGE Syndrome. I am consciously aware that she has CHARGE and that CHARGE is the root cause of all of her health issues and growth delays. However, when I look at that baby girl, I simply see Sophia. A beautiful, one year old girl that possess the capability to change the world, defy the odds.  A girl to love and grow and to grow in love. I hope the world will not look at her as a label but as the amazing girl she is today and will continue to become. I think the best thing I can do for her as her mother is to look beyond the label. To treat her like a "normal" child, not looking at CHARGE as a problem but as a part of her.

Special Moms

The Difference a Year Makes

I had started this blog several days ago but thanks to a glitch in my computer, I lost my words...and it took me a while to find them again. It is difficult reflecting back on that day. On Feb 9, marked the one year anniversary of when Sophia's was trached. It was on that day we had to make the difficult decision to have our 7 week old baby girl trached. Actually, there was no decision at all. Sophia had to be trached to save her life and in that the choice was clear. After the shock wore off of that first emotional week in Riley, I was somehow able to start pulling myself together. I was strong. Only sneaking away in private to cry or in the comfort of my husbands arms. I even managed to hold it together while waiting and comforting Sophia before the took her back to surgery. Together my husband and I had an emotional moment as they wheeled her back into the OR. Then in the waiting room, I felt a sense of calm because I knew in my heart the decision we made is saving our daughters life. It wasn't until I was finally able to see her almost 5 hours later that I... LOST IT. It was almost too much to bare to see my baby girl in that condition. I felt helpless. My beautiful baby girl who from the outside you would have never known she was sick now had these foreign objects invading her beauty. Sophia had her gtube placed at the same time as the trach. I went to the waiting room and sobbed. Then pulled it together and sat by her side day in and out as she recovered. After a long couple of weeks, Sophia slowly but surely started to "come alive". Her color, her spirit, her smile, she was back and really better than ever. It was amazing to see how fast she started to heal and improve once she no longer needed to fight to breathe. In light, one year later and I am still simply wowed by this girl. She has moved mountains and defied all odds against her. Though I would never want to relive that day again, I am thankful that that day led us to TODAY. Today, I have a happy healthy (considering) crawling moving and a shaking almost 14 month old baby girl. She in just that past few weeks has learned to sign. She is up to almost ten signs. She is sprint crawling lol. Pulling to stand and even walking when we hold her hands. We still are not walking and standing independently but I feel we are not too far from reaching those goals either. In a few weeks, we even go back to the doctor to start the process of getting the trach out. I hope and pray that this happens. IF she was able to do some much with her trach imagine the possibilities without IT.

Brag Time

I just have to do it... BRAGGING:) Sophia is so impressive, always. Every little thing is so important and so monumental to us and her progress. We celebrate everything big time. No wonder Sophia loves to clap and raises her hands above her head in excitement all the time. Because all the time, we are clapping and praising her. She gets so proud of herself, too. Sophia makes strides daily. Last year (werid to say) we focused mostly on her health. The goal was getting her healthy and stable. These last few months we are working more with her development. Mind you we still have health issues to overcome like getting the trach out and getting strong enough to eat by mouth; however for now, we are working on her growth and motor skills. After getting her hearing aids we have really been focusing on signing and listening skills. We added two more therapies to the mix and we practice daily with mommy, daddy and nurse. As of today, Sophia can now sign milk, more and baby on command and we are working are on mommy and daddy. Since she is nonverbal, for the present time, Sophia communicates a lot by hand movement and facial expressions. She is a character let me tell you. Without saying anything, she says a lot. She likes to play pattycake, peekaboo, loves clapping and waving hi and bye bye. She is getting very good at copy-cating things we show her like popping her mouth or sticking out her tongue. Imitation is very key to learning to communicate and to communicate through sign. We still have hopes that once the trach comes out Sophia has to capability to learn spoke language but for now this is very important to us. By Sophia showing us she is capable and willing to learn and retain these signs and play skills she is showing us so much about her future. I remember in a very chilling and heartbreaking sit down with a doctor at the being of Sophia's life and them telling us an MRI showed white matter lose and what that might mean for Sophia's future. I just want to say now and loud and proud, you (in modern medicine) can only tell me know so much and you can never tell me what kind of person my baby (any baby) will become in her life. Only Sophia can show us what is can do! She is doing exactly that, showing the world daily just how wonderful she is and I couldn't be more proud!

A New Year

Wow, its hard to believe that it is already 2013. It is amazing the things that can happen in one short year. In one year, our worlds have been rocked, shaken, lifted, but never torn. We were given a daughter to rival most daughters last year. She is a gift beyond gifts and for that our world is new. It was around this time last year that we rang in the new year at Riley. I remember thinking then that it would only be three weeks and then we would be home and in the clear. Little did I know what it would turn into 7 surgeries and countless days and nights of worry and wonder. With all the trials and heartache this year brought us, it all such a minor niche in our worlds compared to all the love and support we have come to know this year. This year we grew in love, strength, courage and comradery. Our goals and our perspectives are new, awoken. In one short year, our daughter has soar beyond expectations. She was went from ffighting to breathe and on life support to crawling everywhere, cruising the couch and to turning big girl ONE. She is our rock star, our strength and our will. She is our faith and our encouragement. She is ours. Because of Sophia so many things in our world have changed in a short year. I had to walk away from a teaching career to be home to care for Sophia. My husband had to put his career move on hold as well to provide us with a stable living and INSURANCE. We have learned that no matter what its family first. Our little family of three. We are as strong as can be. In a years, time I have probably haven't slept an entire 8 hours straight, well the entire year and counting. In a years, time my husband has busted his butt so that we could adjust to a life of one salary. In a years time, I have learned more about insurance, medical jargon, ordering medical supplies, types of therapies and as of a recent I am learning about the world of having a deaf child. To Sophia I am just mommy, but to the world around her I am mommy, friend, therapist, nurse, educator, travel coordinator, and secretary. I wonder if the outside world will accept these qualities on my new resume. Really, it is so hard to reflect back on this year and realize that that much time as already passed. Literally, half of our year was spent in Riley and the other half was spent at home adjusting to our new normal and learning to be parents. In all aspects of our year and in all happenings that occurred during our year, I can firmly state- I WOULDN'T HAVE CHANGED A THING. The lowest lows and the highest highs have made this year one of the most meaningful years of my life. Our lives. We are looking forward to what this upcoming year has to offer for our family. We already know that so many things can happen in just a year so I am not even going to begin predicting what is next. In 2012, we did not wallow in our sorrows but took pride in what was ours and what we could do with that in our lives. We were given an amazing little girl. One that changed our lives forever, gave us love everlasting and the bond of forever family. She gave us the courage and will of lions. She taught us to move mountains by watching her move her own. For she possess these traits and much much more. She united families and communities alike. She taught us values and gave us heart. She taught the world around her to love and have hope again. 2012 taught us about the fragility and miracles of life. So now we blessed to have what is ours, a daughter, a family, a life worth cherishing. This year I will kiss my husband and my baby girl with adoration as I look back onto 2012 with a smile and look onto 2013 with renewed hope, unshaken strength, and rejoice in what beauty lies ahead of us this year.