A Two Year Journey

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.

I. Am. Just. Proud.

I am having one of those weeks were I just have to stop and say, "Wow, God has given me an amazing daughter!" She is special beyond measure and without hesitation. Without trying she makes you realize the important things in life and what not to take for granted. There are those days when I let the chatter in my head become louder than the wisdom in my heart. Those days I just put hand to heart and smile knowing this is my life and this is the only life we get! I am blessed to have Sophia be my life. To be my life changing forever changing part of my life. This week I just am in awe of her. She is showing us new tricks everyday this week. She can sign and point out almost every animal in her animal book. She practically knows her whole alphabet, recognizing and signing. She Knows 17 of the 26 letter by name, sign, and picture. Yesterday, I tried tricking her and asked her where "W' was and sure enough she pointed it out and signed it first try. Then Monday, she impressed us all with walking from her bedroom to the living room without any help. BUT she didn't stop there.. yesterday at trunk or treat she insisted she wanted to walk around. She started walking holding our hand and then she pulled herself free and literally took off. WALKING all around the gym BY HERSELF! WHHHAAAAATT! I couldn't believe it. Normally, she had just been walking as long as she had a destination or something to stop her. Last night she just went for it. It was so awesome. I think it safe to say we officially have a walker!!! She still has balance issues and finds it hard to stand still and stop in place. She still stumbles a lot . The important thing is she's UP and going. My goal was for her to walk by her second birthday. I think we are well in range for that to happen. It is happening. The more she becomes comfortable on her own to feet the better. We have balance issues because of her CHARGE syndrome and that is keeping her from standing still. Its fun to watch her learn to walk. I still get nervous and fall close behind because more than likely the only way she stops is to fall or walk into something to catch her. Hopefully the standing and stillness will come soon. She needs that for protection when she walks. I am just so amazed with her. The average age for a child with CHARGE to walk is between 3-5 years of age.  So, she really is ahead of the bell curve compared to her peers and not her "peers". (did you get it). It really is the little things. Sophia is still not eating by mouth (that is our next dream-GOAL). However, Sophia has such a hunger for life she is now pretending to eat when we eat in front of her. Its kinda cute (kinda sad because I know she really wants too). I let her hold food and she puts it to her mouth and pretends to chew. Its adorable. Really its good practice too. Its also a great sign that she does not have any aversions to it. We have a swallow study mid-month. It would be amazing to hear different outcomes and have the green light to practice feeding her again. Another little thing Sophia has started doing lately is something many of you may have never thought about but is so exciting for me. Sophia will now hold her head back for me in the bathtub when I rinse her hair. This is HUGE for me because it caused so much stress when giving her a bath because of her trach. Sophia couldn't for the longest time hold her head back and this would cause drips to run into her trach which caused coughing fits which caused mommy to stress about aspiration which caused for quick bath times. Now, She leans her head all the way back for me and I can rinse her with a little more ease. I still need to find another nonslip seat of some kind for her because she is growing out of her baby bath with the raised seat thingy. Also, thank you to helpful donations we are going to be able to get Sophia her Ipad and start practicing her with the communication apps. Its going to be exciting. Sophia truly makes great strides everyday. It is wonderful watching her grow. As far as all other doctors and appointments we are just into routine check ups for now. She is still followed very closely. In face Sophia, is so use to nurses and doctors she now knows how all the medical instruments are used and practices them on us lol. She is just a great little girl!

(video to follow)

FIST BUMP

I want to give a HUGH FIST BUMP to all my working moms!! Working and caring for a young child at home has to be the most tiring, mentally exhausting, guilt-consuming, time escaping without warning venture of my life. For any working-mom, it has to be hard to juggle work priorities and providing for your family with spending quality (energized) time with your loved ones. Now add in having a daughter that requires extra 'special' attention to the mix. Most days, I just feel so down right guilty for being at work and missing her growing and therapies and now even some doctor appointments. It just doesn't feel right. I am mom and I need to be there for those times, EVERY TIME. I have an awesome husband and an awesome nurse that are helping me through it all, but that guilty feeling. Its hard to swallow. I teach so I work with kids all day long. I work with needy, rude, loud, soul-sucking middle-schoolers (with the occasional sweetheart thrown in the mix) all day long. It is more draining than running a marathon with preschoolers at recess right after an art activity. Sophia deserves all of my attention and energy. Though, I will say no matter how hard of a day I have had at work when I come home to Sophia signing she missed me and giving me the sweetest slobbery kiss ever, I can feel the life creep back into my soul. How do you working moms do it? I guess I am doing it...With little sleep and dirty laundry. The mess can wait but memory making happens now. Someone tell me I am doing the right thing and everything will be OK. Someone please tell me that Sophia will always love me and think of me as her number one most important person in her life. I will just be crushed if she resents that I work. I can definitely tell she was kind of mad at me at the beginning because she would ignore me a little when I got home. How do you working moms not get jealous of your childcare providers? I guess it is a benefit that Sophia loves hers so much because I would feel awfully bad if she was crying when I left her or when she saw her nurse. Either way, I guess I just want to give you all a huge WAY TO GO! You rock super moms kinda fist bump to the world!

Currently...

Currently... the times seems to be flying by. It seems like days turn to weeks and weeks to years. It has been a while since I last posted. Really a lot and nothing at all as occurred since then. Sometimes the nothing at all is just what we need. Sophia is currently still using the walker (occasionally) to walk about. She actually prefers to walk holding on to someone's hand or by reaching out to the next thing near her for support. She has taken up to 12 steps independently. I will post a video of that soon. She is up to 10 seconds with standing all by herself too. She tends to do better with standing when she is practicing with her nurse. Her little feet get so busy she just wants to move and move. I really wish she was walking independently now. Sophia so desperately wants to go where she wants, when she wants. I am trying to teach her that using her walker will help her go on her own but she would rather take my hand and lead me around. I guess for now I will treasure the fact she wants to hold my hand and lead me through her world. She is so spirited. Her personality is spit-fire. She makes everyone she knows smile. That in turn makes my heart smile. She knows very many signing words now. We are working on combining words together and using sign to tell us what she wants. She really likes to tell me MORE PLEASE HELP and THANK YOU. My baby is the most polite 20 month old on the block. She also lets me know when she wants to watch Signing Times and if I don't move fast enough she starts blowing high speed raspberries at me. I believe that is Sophia's way on yell at me haha. A few weeks back Sophia vocalized real sound. It was so breath-taking. She has the sweetest voice in the world. It was a thrill to see (on video). Yes, she made sound with therapy on my first day back to work. Therapy told me that the session with Sophia making sound was the highlight of her career. She is infact the highlight of my life. Of course, I was crying like a baby at my desk. She has yet to do it for her daddy and I. We are still patiently waiting for her to share her sweet sounds with us. I have never wanted someone to walk, talk, or eat more than my own child. It is eye-opening when some of the most mundane tasks in life become the things we long for most. I will never take for granted one's ability to speak, eat, or walk. For these are the things I pray for my daughter every day. I know she will get there in her own time. I just can't help but to hurt in the time being. I still get a sting of resentment when I see her peers surpassing her abilities. How do you not let that hurt your heart? I put on a brave smile for her and never ever share my own insecurities with her. She makes me more courage and hope than anything I can imagine. Medically, Sophia has been very stable. No illnesses. No changes. We will not try for decannulation until next spring. In the time being we are practicing with the paci muir valve. We will hopefully have another swallow study in the next few months. I can not help but to get so frustrated that they will not let her practice eating due to risks of aspiration but I am very aware of the reasons why. So currently, we are progressively stable in terms of Sophia's medical status.

We are currently looking for a ways and grants to get more services for Sophia is terms of things to benefit deaf and hard-hearing children. We are starting the hunt for IPAD grants because augmentative devices are even more costly. I found an APP for the IPAD that is called, Speak for Yourself. Basically, it allows Sophia to arrange pictures and phrases into sentences to allow her to communicate with the speaking world. That APP is 300.00 dollars. Ugh. They also have several over learning apps and tools I am researching in order to help Sophia grow in communication. I think instead of birthday cards this year, I will be asking people to send iTunes gift cards lol. She loves her Signing Times DVD. She learns so many signs from watching them. I am working on getting more DVDs. She has practically memorized the few we have now. She is also able to point to pictures and sign correctly what she is looking at. We are currently working on colors, animals and daily around the house stuff.

I mentioned early about work. I am currently teaching art again. It was a tough decision but I feel that Sophia is medically stable enough for me to go back to work. I am very fortunate to have a terrific home nurse that goes way beyond the call of duty when it comes to caring for Sophia. I can literally go to work worry free and that in itself is a blessing. I am also very lucky to have found such a great school to go back to work too. However, being a working-mom is the most difficult job of my life. I will save the details for another blog.

We are currently selling our home. We are in the search of something better for Sophia. We currently have a two-story and it would make a wonderful home to someone starting out. We just need an open-concept single story for Sophia. We can't move a lot of her equipment up and down the stairs and we want to be on the same floor as her. We also need an open concept so that it will be easier for her to move about. We thought we had it sold on the first showings but long story short it fell through. We hope it sells quickly and that we are able to find the perfect home for our family.

When she wants to walk, she WaLKS and when she wants to roll, She Rolls!

Our daughter has a walker. Our little old lady baby is cruising around the house with a walker. It's really kind of cute. Now, she has ankle braces and a walker all in hopes of getting this baby big girl walking on her own. Sophia turned 18 months yesterday and she is now officially a delayed walker. The therapist was impressed with how quickly Sophia took to using the walker. Her hopes are for Sophia to no longer need the walker after a few weeks of use. It is a tool to use to get her more mobile and to give her confidence in her cruising. To us, it'd just another thing. We are always adding one more thing to our "normal" little world. I am always for adding the new things if it is going to help Sophia in anyway possible. Only thing now, is we definitely need a bigger, a more open concept home for her. We have been saying this since we first brought all of her stuff into our home. Now with her on the walker, I see the need growing. She walks so far then runs into something and then I have to come adjust her because she hasn't figured out steering and really lacks some upper arm strength to turn the walker on her own. Is it a need or a want? I don't know but I want to need it. I really hope the walker helps. I hate that she put a "time frame" on it because if that time comes and she misses it I do not want to feel disappointed. A lot of Sophia's walking delays are due to the inner ear being under-developed and affecting her balance. Its a "CHARGE" thing. For now, we can take the walker with us to the park and out and about and have her use that to walk around. Of course she will get tired from time to time so it will be at her pace as in all things Sophia. So for now we are WALKING and ROLLING around our house.

Expectations...

We all have our expectations. We expected going into the sleep study that Sophia probably would not pass the decannulation. However, what kind of mother would I be if I didn't hold onto HOPE for her. We got into the appointment, paper work, talk of game plan, hooked her to wires, pause for breathing treatment... then GO TIME. The doctors had me pull Sophia's trach out because they felt she would be more comfortable having me do it since I am the one who changes her trach most often. I pulled it out and she was fine. That was until they covered her trach stoma with a bandage. Instant terror swept over her little face. She was reaching for me to save her. It wasn't long, mere seconds, that Sophia continued to struggle to breath. She was completely purple, eyes rolling back into her head and the doctor finally said she can't breathe (UH DUH). The doctor reached to pull the adhesive bandage off Sophia's neck and struggled. I reached down and started to pull it off as fast as I could. The instant it was off Sophia drew a deep breath and fell into my arms. I leaned down over the bed and she wrapped her little arm around my arm and fell into my neck. She was squeezing my arm so tight. We both cried. I held her in that awkward embrace for longer than the bandage was on her neck. I tried to readjust once and she grabbed me tighter. I held her until she fell asleep from sheer exhaustion in my arms. It was awful to watch her panic like that. I felt helpless knowing she was fighting to breathe. It was much worse this time than seeing her dip in and out of a blueish state when she was 7 weeks old. Now she was showing pure emotion and fear with the color change. It may have only been seconds but those seconds are engraved in my memory. It may sound strange but seeing her in distress broke my heart, but feeling her need and love for me when she wrapped her arms around me made me feel a feeling that's hard to describe. Selfishly, I was finding just as much comfort in her embrace as I was suppose to be comforting her. The best thing of all is she won't remember a thing about that day. I will carry the mix of those extreme feelings from that day with me always. You break down and get built up all the same. 

So now, we wait..again. The scope has shown no physical blockages in Soph's airway and it remained open during the procedures. However, the doctor said the collapse must still be present and closes when shes panics especially. The only thing we can do is wait for her to grow. The more she grows the larger and stronger the airway will become. They didn't give an estimate as to when they would try again. I am really in no hurry this time around. We go back to the doctor to see pulmonary in July. 

As far as everything else, her eye sight is great, she hears well enough to sign correctly what I ask her to sign, she knows more signs than I can keep count of now, she is recognizing things and people, she is cruising well, and we got fitted for ankle supports. We will pick up the supports next week. Hopefully they will give her the stability to walk by herself. We also see the kidney doctor this month to check on her reflux. All her therapies are going well. She is starting to climb on things now. She gives the best kisses and hugs and she is so loving. She has more personality every day. She is a character. She signs mommy and daddy when she sees us. She points to everything and I have to tell her what it is. Thank goodness for Iphone signing apps. We were at the zoo watching the dolphin show. She was having a blast. We showed her the sign for dolphin and she caught on instantly. This past weekend we were walking around the shopping center outside. She started signing dolphin over and over. I was like yeah dolphin. Then daddy said I wonder why she is signing dolphin. We look around and sure enough, a little girl that walked passed us was holding a stuffed dolphin. It is amazing what she is learning and remembering. She put together from a real dolphin and toy dolphin and signed it correctly from memory. She is my baby genius. So Proud. Being a parent of a child with special needs (I say this loosely) is more rewarding than anything in this world. We struggle more with how people, even people closes to us, handle our situation more than we do. I will save that for another blog. Sophia is our life and no matter the hard times we go through with her at the end of the day, we get the best gift and that is her love. 

Pray for Sophia Day

On Wednesday, May 29 Sophia will be admitted to the hospital around 9 am for her first attempt in pulling her trach for permanent removal. Sophia has reached the point in which doctors feel comfortable in starting the decanulation process. We have a 50/50 percent chance of succeeding or failing. The process will consist of a sleep study with her trach out in which they will pull her trach, cover her stoma, and connect her to many monitors. She could and most likely will not pass on her first attempt at decannulating. The doctors are optimistic that she is ready to TRY. This is either going to be a quick day or a long anxious day. This could be a ugh there is always next time kinda day or this could be a take your breath away kinda miracle day. All we can do is pray. Believe in miracles. And allow our hearts to fill with hope. I am going to try and mask my self in courage and a shield of self awareness so not to be overwhelm with despair or heartache if she does not pass this time. I will keep my heart open for possibilities. So I am asking, that on May 29th for you all to keep Sophia in your prayers throughout the entire day. She is a little girl who deserves big amazing things.