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.

I Don't Say It Enough!

I really don't say it enough but I am so so lucky to have Sophia as my daughter. I am so lucky to be her mother. I grow each day as she does. I learn to see the world with my generous and wondering eyes. Simply watching her play, gives me great joy. She is learning so much daily. She is so smart. She knows more signs than I can count, learned to ride her car, and just yesterday she learned A B C in sign letters. Sophia is more than just smart. She is so sweet. She shows love so purely. I was getting frustrated last night because it was well past bedtime and she was refusing to sleep. She would fall asleep and as soon as I laid her in her bed she would be awake. I picked her up for the 4 or 5th time after having her asleep and said now Soph this needs to stop and then she just wrapped both of her arms right around my neck and hung there tightly. Melted my heart. I quickly realized that it is in those late nights, I can be overwhelmed with true love.....


I have so much love for Sophia. I have so much love for my husband. Watching her love Sophia so much as made me love him even that much more. So if I haven't said it enough, I am so blessed beyond belief to have them both. I draw strength from them daily. We may have hard days and nights, but they are getting easier. Rough days make the good ones even more sweet. This weekend we went on our first family venture to the zoo. It was a success. We went into the dolphin show. They don't allow strollers but because we have it packed full of her gear we asked if we could bring it with us. They put out chairs for us in the front of the bleachers. Sophia was a hoot. She was smiling and waving at the crowd. When the music started for the show, she began clapping and watching. It literally brought tears to my eyes knowing the pure joy she was having. I can not wait to create more of those memories with her and the hubs. We are better people because of Sophia. She lights our world.

Inquiring Minds

We, as a family, are always growing and always learning something new. Yesterday, I learned the sign for weather and about ankle braces. Things I never thought I would have to learn are now things I am most curious to find out. Everyday for our whole lives, we will be learning and adapting to the new normal of what is our lives. I've learned so much medical stuff that I easily have my lpn or cna. Too bad my credentials won't land me a job. There are so many things I am starting to think ahead about. I was talking with our PA and she was mentioning things about how deaf or hard of hearing people can not or have a difficult time when calling into 911 because they can't hear to talk on the phones. How there are relay systems deaf and hard of hearing people have to use when making phone calls. That technology is going to be our best friend when it comes to adapting to Sophia's hearing loss. Who would have thought?! I need to look into things like flashing smoke alarms, light up alarms clocks, flashing doorbells, call systems, etc. Wow, where do I start? Does insurance cover these things? It may be a little down the road but they are in sight. We were even talking about school programs for hard of hearing kids. Are there preschool programs and/or daycare programs for deaf and hard of hearing kids. What types of school will I send her too? So many questions... Right now, we are discussing putting Sophia in an ankle support brace to kick start her walking. She has very low muscle tone and her balance is wobbly. Our PT and doctors believe this will be the ticket to getting to walk quickly. She is cruising all around the furniture but is still too unstable to stand. The doctor said she often puts kids in these types of supports when they are at Sophia's stage and they take off walking in just a few weeks! Ill take that. Sophia will be so fun as a walker:) Currently, I am awaiting the results from the cardiology study. I am assuming at this point no news is good news. Also, we are still in the waits of this sleep study. Things keep pushing us back. I am eager to get on with it but at the same time I know the more time we wait the better chance Sophia may have to succeed. This post is a little rambley but that is often how my mind works these days. One minute I am thinking about what medical supplies we need to order, how does Sophia secretion seem today, what should I make for dinner, I wonder if we can go to the park today, why haven't they called me for the interview yet, I wonder how you say giraffe in sign language, I just wish I could make cookies for Sophia to eat, I wonder when her trach come out, daydream about taking our baby to the beach, remember sand and trachs don't mix or water for that matter, I need a better solution for the bath tub, I wonder if my husband and I can go on a date this month, I should go for a run, run I mean walk, I wonder if Ellen has read my blog, I need to learn to sew and the next minute I am thinking of a new game or activity to do with Sophia. Then I start thinking if I am doing enough for her, what can I be doing better at, are there different exercises to do or toys that will help her learn this or that. It's really a vicious cycle of thoughts in my mind.

Home again...Again.

What an incredibly long week this has been. I am utterly exhausted and currently running on very few hours of sleep in days. Sleep is hard to come by when you have a sick child and even harder to come by when in and out of the hospital and answering constant monitor alarms. We are finally back home, again. We are hoping to stay here longer than a day this time. Last Sunday, Sophia came down with an awful awful virus. She was sick. Very very sick. For three days all she did was sleep and diarrhea. When she did wake she barely had the energy to open her eyes. She would look around the room for a few minutes then fall right back to sleep. It was awful seeing her soo weak and soo sick. Wednesday came around and she was perking up. Not significantly but more alert and able to stay awake for hours at a time. They took her iv off and wanted to see if she could maintain her levels without help. She was able to do so and by Thursday morning the diarrhea had finally stopped. However, Tuesday night her heart rate kept dropping very low. Around  60s and 50s. I brought it to there attention that this was not normal and they said they would watch her close. Wednesday around bedtime, Sophia dropped her heart rate even lower 50s and 40s while asleep. They ordered and EKG immediately. She had three done from 10pm til 9 am Thursday. The referred us to cardiology. Cardiology came around and said something's about sinus bradycardia. Asked about history of heart disease and pace makers?! They reviewed the EKG and concluded that they weren't seeing anything too alarming but insisted Sophia wear a heart harness for the next 24 hrs. They said due to her improved health from the virus and because insurance wouldn't cover wearing the heart harness as an impatient they felt comfortable discharging us Thursday evening around 4pm. We went down to cardiology and they connected sophia to the monitor. So around 5 we finally had the green light. Though Sophia was in better spirits she was still not very playful but we were heading home. As soon as we got home, John and I started to feel horrible. John was dazed and aching all over. I had the chills and was burning up. I got a low grade fever. I put Sophia to sleep and sent John to bed. I tried breaking my fever all while getting up and down every 10 mins all night to silence Sophia's alarms and make sure she was ok because her heart rate was dropping too low again. It was by far the worst night of this whole week. I called the doctor in the morning and she said to watch her closely and since she wasn't symptomatic then I could bring her into clinic first thing Monday but if her heart rate dropped again throughout the night to bring her back to Riley. So around 2 am we packed her up and headed back to Riley with no sleep for us. They admitted us to the heart center and connected Sophia to telemetry. Telemetry is where someone is continually watching her heart rhythm through a monitor. They kept us over night to get a "good" reading. This morning they came in and said it didn't record anything too significant. Lowest averaged in the 60s which they were okay with and oxygen levels were between 94-100. This is all great. They will want us to follow up as outpatient by the end of the week when the results from the heart harness are back. I truly hope this is all stemming from Sophia being completely worn out from the virus and nothing more. I really really hope that she sleeps ok through the night tonight at home and no more low alarms. I truly do not want to be back at Riley anytime soon. Prayers to continue.... I am going to nap. Wait, moms don't get to nap. Do they?

The Hospital Life

Here we are again, admitted back into Riley hospital. We are getting far to comfortable with hospital life. Sophia is in very lousy shape right now. I have never seen her this weak since the first couple weeks of her life in the nicu. She's very weak, sleeping all day and night. No energy for anything. Thursday morning, I was subbing and got a call from our nurse that Sophia was throwing up nonstop, which is not usual for soph. I called her pediatrician right away and made her an appointment. She ended up getting a slight fever that broke with Tylenol and by the time the appointment was she was in better spirits, of course. As soon as we got home from the doctor she had another fever and more throwing up. We got both under control and she went to bed sound. Friday she seemed a little better until the afternoon. Then the fever returned, we called the doctor for the third time and he said it was normal when fighting a "bug" to have low grade fevers. Saturday, Sophia slept away the afternoon and then had constant diarrhea all evening. She tolerated her feeds and pedialyte but just seemed miserable. She slept the night and woke up in the morning and looked completely different. Sunken eyes, dry mouth, blue hands. It scared me. She looked like a different baby. We then got in the car and headed straight to the Riley ER. I felt horrible seeing Sophia in that condition. I felt like I had failed her. She was admitted with severe dehydration and then later we found out she is working through a nasty virus called rotavirus. They said I brought her in right on time because it could have gotten much worse. She lost 2 pounds so quickly. I thought I was doing everything right at home; keeping her fever down, giving her fluids and her pedisure but it wasn't enough. We are looking to be at Riley for probably a week or until Sophia can get all her levels back to normal and come off the IVs. She has been sleeping for two days straight. When she wakes, she is very "out of it". Weak and not her happy little self. It breaks my heart to see her like this. We hibernated all winter to avoid getting the flu or any kind of bug because we feared this the most and look here we are. We have no idea how she contracted the virus but it reinforces the need for everyone to always wash their hands and to be aware if you've been around anyone sick. Heck we could have picked it up visiting the doctors office for our checkups or at the park or who knows. It's pointless to find the source. What is important is trying to get Sophia healthy and home again. In addition to Sophia being so ill with this yucky virus, we are also at risk of getting it too. I really pray our immune systems are strong enough to fight it than Sophia's. the last thing she needs is a sick mommy and daddy too. Please say a little pray for Sophia to fight this virus quickly and for her to get back to her healthy happy playful self and that her parents stay healthy. It is so sad seeing her so uncomfortable. I feel helpless knowing I can't do anything to make her better and even worse that I couldn't prevent her from getting it in the first place even with all the precautions we take daily. Right now, Sophia is asleep. Her levels are getting back to normal however she is still having diarrhea and some vomiting. We will be at Riley until everything is back to normal. Prays for a speedy recovery and a soon homecoming.  Speaking of homecoming, today is the one year anniversary of the day we finally got to bring Sophia home from Riley. It was such a joyous long anticipated day. We were thrilled and anxious for getting her home. It has been a wonderful year of growing and change and love. It is amazing what time does. However, it is quite ironic humor to be celebrating our one year homecoming back in Riley. I guess Sophia wanted to celebrate with her peeps. I will say staying in the new side of Riley is a luxury compared to where we lived for 5 months. I have a cot and a couch and a chair and a TV and a fridge and its just like a hotel hahaha. As I said, we are getting far to use to hospital life.

Side note update: Sophia did have her 8th surgery and procedure on her nose. Her airway looked great during the scope. The doctor wants to wait a few weeks before we schedule the sleep study. This virus is setting us back a bit. However we are still on the right track for trying to get the trach out. I am still not hopeful she will pass the first time around but we are a family the believes in trying our best.

Please say a pray that Sophia pulls through this fast. And say a pray for the hearts of this world. This is the second time in a few short months that my heart is broken for people of this world suffering losses for senseless acts of hatred.

A Glimpse into our Day

I thought I would share with you all a glimpse into our daily routine with Sophia. Normally our day starts pretty early, as does most days when you have young children. In the morning, before I get Sophia out of her crib, I have to disconnect her from the trach collar and unwrap the oximeter probe from her foot. I then turn off the humidity, the oxygen, and the monitors. Then we are free. I usually spend a good few minutes of the morning suctioning Sophia's airway clear. She tends to have a lot of secretions in the morning. After that, I get her a new HME to protect her trach and give her some humidity throughout the day and then put in her hearing aids. The suctioning continues throughout the entire day. I suction Sophia every 5-10 minutes a day. The suction machine goes where ever Sophia goes. It is usually always within mere feet from here and it always requires an outlet to be plugged into. The internal battery on the suction machine (if it is working properly) can last anywhere between 2-4 hours unplugged. I have gone through 4 suction machines already because they just tend to stop working, which is a big problem for us. At 7:30 am, Sophia gets her first feed of the day via her gtube. Sophia only eats Pedisure by gtube 5 times a day. She eats every 3 and half hours. We have another swallow study this month and we hope to be able to introduce foods by mouth. With her morning feed, Sophia also gets her morning medicine. She takes an antibiotic daily for her kidneys, a vitamin daily, and a medicine to help with her secretions. We have already eliminated two prior medicines from the list. It usually takes between an hour and 40 minutes to feed Sophia, each feed. We feed her slowly to help avoid aspiration. We also follow her Pedisure with 2 ounces of water daily to ensure Sophia does not become dehydrated during the day. After her morning feed, I then get Sophia ready for the day. This consists of cleaning her trach site and gtube site, removing and placing new gauze, changing her trach ties, and then getting her dressed. Then depending on the day and time, Sophia normally has therapy with First Steps for the next hour. Sophia see 5 therapists a week for an hour each session. The therapists include: PT, OT, Speech, Developmental therapy, and a parent advisor to work on sign language. In addition to her therapies, the nurses and I work with Sophia daily on her exercises and therapy activities. These include, neck stretches, balance exercises, learning games etc. I truly love having First Steps involved with Sophia. It is like having early preschool and they give us so many ideas we wouldn't have thought of alone. Sophia also really enjoys each of her therapists. By the time therapy is over, it is nap time. Followed by her next feeding and medicine. We also squeeze in lots of play and loving time.  Play, Eat, Play Eat. In the evening, I give Sophia her bath. She loves bath time. Which is great, except it makes mommy nervous because she likes to splash which is unsafe because it could get into her airway. We are very careful. I still use a baby bath with very little water. I am like super hero speed in the water and out. After we get all squeaky clean. I normally change her entire trach depending on the day or otherwise I change her trach ties, place new gauze (Her gauze if changed as needed throughout the day as well), then the usual lotion, pjs, brush hair routine starts. We then start our bedtime routine. Last feed, read, cuddle with lovey bear, and rock to sleep. After Sophia is good and asleep, I take her to her crib and then very carefully connect the probe around her foot, place the trach collar around her neck, turn on the oxygen, monitor and humidity and then turn on baby monitor. Sophia usually sleeps throughout the night. However, I am still up two-three times a night answering false alarms, reconnecting the trach collar hose or generally just checking on her. Then REPEAT. Many times Sophia has at least 2-3 doctors appointments a month. I normally receive at least 1-3 calls a day regarding Sophia for either her medicine, doctors, supply orders, nursing agency etc. I do get nursing help during the work week so that I may work and do our daily tasks to keep the house afloat. The busiest part of our day is suctioning Sophia. It is a 24/7 job. A very important job. I am very grateful to have nursing assistance. I also have to continue to have someone in the car when I do travel with Sophia. Someone has to sit in the back seat with her to suction and watch her in case of an emergency with the trach should occur. Below I am going to post a few pictures of what our day looks like....

 Our second oxygen tank. It stands about 4 feet tall. 

 Gtube and syringe

 Vent stand, humidity, trach collar set up, and other oxygen tank by crib side

 Monitors

 Sophia's room with all her medical stuff

 Sophia's Trach

 The emergency bag and oxygen tank that go with us everywhere

This Could be the Start of Something Good

Well, this could be the start of something good, wouldn't you agree... Tomorrow Sophia makes her 8th trip to the Operating Room. She will be put to sleep yet again to have her airway checked and her nose dilated again. This means she will have an instrument go up her nose and stretch and widen her nasal passage and she will have a bronch scope go down her throat to check to see if her airway is open and no longer collapsing. The past scope showed that her airway remained open when they performed the scope so we are optimistic that it will look good again. After her last trip to the OR, we were able to bring Sophia home that night. We hope that to be the case again for this trip. She will be very sore and tired afterwards but we can manage that at home granted everything else is good too. She normally has bleeding afterwards from her nose and trach, it looks scary but it doesn't last long. I am sure it doesn't feel good either. Prayers are appreciated for a smooth 8th trip to the OR and great outcomes. After the results from scope in the OR tomorrow, doctors will then be scheduling that long awaited sleep study in which they will pull Sophia's trach and see if she can breath without it. Scary thought. Therefore, hidden in tomorrow, could be the start of something wonderful. The official start to working towards getting Sophia's trach out. During our last appointment to pulmonary, the doctor informed me of something I had never been told before. Something that somewhat, floored me. She came in stating, "I must tell you forehand, that many children with CHARGE do not ever decannulate (get their trachs out)." What?!?!? I never have been told this. She then went on to tell me, "However, with that said, developmentally and physically Sophia looks great. Many children with CHARGE syndrome that do not decannulate have very serious heart conditions and do not come off the vent as quickly as Sophia has. With that I am optimistic for Sophia, and it is worth a try now." She then went on to say, that "I needed to tell you that upfront so that you are not devastated if this does not work, and I honestly do not think it will work on this first try but like I said I am optimistic about Sophia. If she fails, we will try it again 6 months later." I then asked her why she thought she was going to fail this time around and she explained to me that it could simply be that her airway still isn't strong enough and by age 2 the airway grows wider on its own despite the floppiness that it will most likely be wide even to stay open. Very worse case scenario is that it is a cranial nerve issue attributing to her breathing issues, in that case, well in that case I will just cross that bridge if we come to that. I cannot let my mind wonder down that path right now. So basically, with that said, the doctors our very optimistic that it is time to start this process with Sophia given her continuing improvements, but the reality is that she simply may not be ready at this time, but it is worth a TRY. I certainly believe you will never know how something turns out unless you try, so try we will. I honestly think it would take a miracle and many prayers for Sophia to pass the sleep study the first time around. We could use them. I cannot imagine our lives with Sophia without a trach. Actually, I can. I daydream about it all the time. Being able to drive around with Sophia on my own, the freedoms it will bring, the less worry and sleeplessness for all of us. It would be a beautiful change in our lives. We could go where ever we want and need, we wouldn't have to worry about having an outlet near by or the battery life of our suction machine. We wouldn't have to haul around an emergency bag and oxygen. We wouldn't have to worry about oxygen running out or ordering more medical supplies. We would be able to freely stay over night places. We wouldn't have to have a nurse with Sophia all the time (granted I love having my nurse support) but what people don't get it is that I would love to be able to have Sophia with me without a need for a nurse. A nurse isn't a free babysitter. She is present because at any moment an emergency could occur with Sophia and it would be neglectful on our behalf not to have a nurse with Sophia, especially when I cannot be there. I do need to work and sleep some times lol. Having the trach out would mean Freedom, on soo many levels. Thinking about those days ahead of us brings tears of joy to my eyes. So I ask for many prayers, that this truly is the start of something good, that perhaps she could pass the first sleep study, that she continues to grow stronger and stronger, that her airway heals, that she can decannulate in the near future, I pray for freedom. I pray for good changes. I pray for the wonderful healing days ahead. I pray for miracles. I thank you all for doing the same.

On a side note, I would also like to ask for prays for myself and my career. I had an initial interview for an art teaching position starting in August. I was told I could expect a second interview and my resume was at the top of the stack, however the second interview wouldn't be until May. I really need this job, so prayers are welcome.

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.