I have no idea where to start. I have so many wonderful things I want to share with you all about Sophia. It has been a few months since I have been able to update my blog and longer since I have been able to do photo updates. So, with saying that, be prepared to be overwhelmed with all things Sophia haha!
I cannot believe it has been two years since we started on this new journey with Sophia. Year two has been very good to us. The first year, like many first years with a new born, were the most challenging and most changing times ever. The first years with a CHARGE baby are always most critical. It is within that first year that many CHARGE babies are fighting to LIVE. We have been blessed in the second year with being able to really starting LIVING. We started the beginning of the year with a surgery, an illness that hospitalized Sophia for another week, a weekend stay in the heart center, a 24 heart monitor recording at home, a sedated MRI, a failed attempt to take her trach out, and several routine check ups. We ended 2013 with one recorded attempt to talk, LEARNING TO WALK, mastering over 100 signing words, signing and recognizing our alphabet, numbers 1-7, colors by sign and occasionally on recognition, developing a fiery personality and learning the concept of time-out (lol) and the love to sign and sing songs. Our year started a little rocky much like year one, but I can honestly say we ended on such a high note. As I reflect back on the year, first I am floored that another year as truly passed but more importantly as I look back onto 2013, I SMILE. Despite having CHARGE syndrome, despite every delay, every hospital stay, medicine, therapy session, insurance phone call and all; my child, my beautiful Sophia, who shines through it all is the reason why I can look back onto 2013 and smile such a wide, tears in my eyes, and warmth in my heart kind of smile. She is the best thing that John and I have created together. She brings us so much love and in her growing and changing and perseverance she brings us closer. I am simply just so PROUD of her and all she is doing in her life.
As a family, in 2013, we were able to experience many firsts together. It is wonderful the things having a child does to your life. It makes every average thing special. It makes every experiences, even old ones, new again. Having a "Special Needs" child amplifies these experiences!!!!! This year we got to spend a lot more time outside. We made several trips to the park. We also had our first trip to the zoo. This was huge because it was our first real adventure together with Sophia. The first trip was a test to see how well and her equipment would do without an outlet and how well we could navigate and suction her through crowds. When we visited the dolphin show, they had to get us special seats so we could bring the stroll in so we could keep sophia's stuff handy. It was great, not only did we get front row seat in front of the bleachers but Sophia LOVED the dolphins and was dancing and clapping the whole time. We made a few trips back to the zoo after that. We also had our first over night stay in a hotel with Sophia this year. We could only stay one night because of her oxygen supply but it was a success. We are weening Sophia off of oxygen as we speak so this will lessen the over night load. We will still have her big machine and monitors to attend to though. Having oxygen and knowing it runs out so quickly limits our travel:( Oh and the fact I have still not been able to drive alone with Sophia really buts a damper on some outings when we are the only two home. Maybe in 2014 that will change...maybe. We got brave this year and took Sophia out to dinner with us at a few different restaurants. We still get very nervous one about germs but two we try to be respectful and take her to places where he machine will not be a distraction. So far we have had very good experiences out in about. People of course look when he machine turns on. I expect them too that machine is as loud as hell. Generally, people look away and are very respectful after making their first curious observations. We get a lot of polite smiles and some children pointing and asking their parents what in her neck. I am grateful for polite people and parents. It makes me feel more at ease in public places with Sophia. We have had a few outings in which we needed to leave quickly because her machine started to run out of battery or she started having a coughing fit from something in the environment. Being quick and ready to move at any time comes with the territory. Speaking of move, we sold our first house this past fall. We had an offer we couldn't refuse. We are still currently searching very diligently for our new "home". We are hoping very much that the perfect house for our family and most importantly for Sophia pops up on the market soon. Fingers Crossed. As a family we were all able to celebrate being another year older together because we are all December babies. Birthdays are great but celebrating your child's birthday and throwing them special party is even better. All in all 2013 was good to the Rhodes' I hope to update more blogs with photos and videos soon.
So far the new year as been wonderful to us as well. We started 2014 getting to celebrate the union of another family by all of us being apart of their wedding ceremony. Very close friends of ours asked Sophia to be a flower girl in their wedding. I was so nervous all year thinking about her big walk down the aisle and if she would be able to walk it independently. And sure enough Sophia started walking all on her own this fall and starting walking really well a month before the wedding day. I walked hand in hand with Sophia down the aisle and then set her "free" to walk alone. It was beautiful. Sophia also got a potty chair for her birthday and so far this week she has went potty 5 times. It took a while before she actually went and I wasn't really trying to train her. I would just sit her on the potty her and there and one night she went and surprise the well ironically you know what out of me lol. AND the BONUS I accidentally got it all on video. I will cherish that one always. So far this week, she has went potty every night before getting her jammies on for bed. So far so good. Yesterday, I came home from work and the nurse showed me the new words Sophia knows. Not by sign BUT she can recognize what the word is by spelling. Sophia can recognize CAT, DOG, MOM, DAD, DOLL, BALL, AUNT and BOY by its spelling. WHAT!!! She just turned TWO. This girl has a rock star memory and an appetite to learn like no other. Today, I got a text that Sophia found the two M's and put them an inch apart on her board and then went to the bin and started searching. She then pulled out the O and placed it right in the middle of the two M's. She spelled MOM!!! I am floored!! This girl rocks my world.
