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.