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.

Happy First Birthday

At 8:54 am on this day last year, our sweet baby girl bore her way into this world. 6 pounds 12 1/2 ounces, head full of dark hair, beautiful lashes, perfect. In an instant, you changed the world as we knew it. In an instant, you gave love to our lives we've never knew before. In an instant, you gave us strength we could only imagine to possess. In the instant you were born, our hearts grew with pride, excitement and curiosity to meet you. Within moments, that excitement grew into a weary smile as they whirled you way and within the hour you were on an ambulance heading to Riley. Anxious, Joy, Confused, Fear, Need, Empty. Finally, at 9:30pm, I was wheeled into a crowded NICU to see my baby girl for the first time. I remember saying, "I am not close enough, I can't get closer". Then a calming nurse laid her hand on my shoulder and said, "Would you like to old her".  An exasperated YES fell from my lips. MELT. My heart instantly melted for you. I was finally able to look into your sweet face and feel your warmth in my arms. Changed. In that instant, I was forever changed. I was a mother. You were perfect for us. Joy, Pride, Beauty, Hope, Strength. They say, all at once the world can overwhelm you and in an instant you are changed forever. No words were more ever truly spoken. Words alone cannot describe the emotions we have felt this year. Above all else, I feel overwhelming joy and pride in being your mommy. Sophia Kay Rhodes you are our light, love, hope, and strength. I would have never imagined what this year was going to bring us walking into the OR that morning. Our family has made it through the highest of highs and the lowest of lows. Sophia you have given strength we never knew we had and a greater love than we knew was possible. I couldn't be more proud or love you more. Happy First Birthday Sweet Girl! I cannot wait to see what lies ahead of us next year.

12-27-11

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12 months

Nom Nom

Well, many of you may have been long awaiting the results of our swallow study (much as we were). Instead of telling you the results......

                                   

During the swallow study, I have never been able to feed Sophia more than a few drops of food before they have asked me to stop. This time, they had me feed her with the dropper then with a baby spoon and finally they said "Let's try some yogurt, too". After a few bits of the yogurt, which Sophia made a sour face towards, they walked over with the best news ever. They told me, I think Sophia is ready to start eating by mouth!!! I cried happy tears instantly. What a thrill. They went on to tell me that Sophia could eat one tablespoon, three times a day. They want her to eat baby food purees, yogurt, pudding, mash potatoes, and even ICING for her birthday was OKAYED!! Well a few hours passed, we were upstairs at our pulmonary visit and the nurse came around and said "I don't want to do this, but I have bad news. The speech therapist called and said to put the feedings on hold until the doctor reviews the video again." Talk about the worst "take-back" EVER. I was on cloud 50 million about our previous news and now I felt like someone hit in right in the gut. UGH. So now we wait, we ended up waiting until today to find out the news, mind you our appointment was last Thursday before the holiday weekend. However, today, I finally received word, that Sophia in fact HAS THE GREEN LIGHT to eat by mouth. This time, it is only two tablespoon per day. One in the morning and one in the afternoon. If there is any signs of aspiration we are to stop and call the doctor. Today, Sophia's Daddy and I fed her her first couple bites of baby food. It really is an undescribeable feeling. To be able to parttake in what many would think was a mondane activity with your baby, to us is a miracle. A true treasure. Eating is so social. So normal. It is amazing to be able to introduce Sophia into this new world of foods with TASTE. However, small a victory this may seem, too us this is HUGE and we couldn't be more happy. It came right at the perfect time too, Sophia turns ONE YEAR OLD tomorrow and now she may enjoy in smashing her cake and eating the icing. That in itself is gift enough, especially to this mommy. 

Sophia's pulmonary visit also went very well. For now everything remains the same, in two months if everything is still good they are going to order another bronch to check her airway for collaspe. If her airway still looks clear, they will order a full day sleep study at Riley. We will check-in during the morning and once Sophia goes down for a nap, they will take her trach out and see how she sleeps. If she does well during her nap they will take it out and watch her sleep all night without it. If she passes that, we will go home that next morning without her trach. If she fails, the nap we start over a few months later. This is amazingly surprising news. If everything goes as planned, Sophia could have her trach out within 3 months. Wow! What a whole new world that will bring. Keep the prayers coming, you know I had a revealation as well, if you don't believe in the power of prayer, I hope just knowing Sophia's story can change her hearts and minds. 

Merry Christmas

From our family to yours, We wish you a very special and very Merry Christmas and a Happy New Year!!!

Can you HEAR that?

December 10, was a very anxious and exciting day for us, Sophia got her first pair of hearing aids. Purple hearing aids of course. If you got to have them might as well be styling, am I right? She did wonderful. The left aid fits perfectly and she goes on about her day of play as if its not even there. That is huge for a baby! The right aid is longer because she needs extra power in that ear and it doesn't fit well and needs to fall out or have extra feed back. They can't adjust the aid because it fits the inside of her ear just doesn't stay behind her lil floppy ear lol. I am sure we will figure something out but in the mean time the left one is working great and that is the most important thing. As far as telling a difference in her hearing it is difficult to tell right away, however, I am noticing her reacting to more sounds and quicker response to others. Time, like always, will tell. I was so afraid they would just look awful on her but quite honestly, they are so cute. From the front view, they are barely noticeable and from the side you just see this tiny purple "blue-tooth" (as daddy calls her new gear). She is precious. We have two new therapists coming to work with her weekly now for auditory and listening development and possible signs. Our hope is that her left ear provides her with enough sound that she can distinguish speech sounds and learn spoken English. If not, we are more than willing to learn a new language as well. It a possibly she will just do both. One of our therapists is deaf herself, since age 4, she speaks great and as of three years ago finally opted for the cochlear implants. I think she is going to be a great fit and be able to provide us with lots of personal assistance. As far as the implants go, we may decide to let Soph make that decision as she gets older and we see what her hearing needs are. As of now, we are watching her and learning a new world right along side of her with her hearing aids.