Water- You are no longer our Kryptonite

Thursday, amist the craziness going on in our world right now, Sophia went back to the OR for her follow up regarding her second sugery to repair the open stoma in her neck.With much hesitation and precaution, we proceeded with the surgery because man its been a long year. Since, I last posted about when Sophia got her trach out in Sept. She has had two additional surgeries one in November to try and repair the open stoma. We gave it a few months heal and then due to pneumonia another 8 week set back. It did not close but it did get smaller. In Jan. she had surgery two to repair the stoma opening this time with a few stitches. In a matter of days, I could tell a HUGE difference. While holding my breath, I whispered to myself I think this is working. It made such a huge change in a mater of days that 2 weeks post surgery, she was finally able to rock a naked neck to school. I asked her how she felt about it. She put it simply "no bandaids, no ouchies. This is great". When she returned to school with new nakey neck she was actually late to class because all the teachers that stopped her in the hallway on the way to class with congratulations! Even with the visible change on the outside, we had to wait until March 12 for her scope in the OR to get the final approval from her doctor that it was truly closed or not. With my breath held and tears already in my eyes, I waited what seemed like the shorted OR waiting time ever. Like I sat down and made one phone call to my husband and my name was being called over the intercom to meet with the doctors. She walked in with a smile on her face and bursted out without hesitation that her neck was closed! Instance applause and tears. Even from the doctor herself. Our doctor said "honestly, I did not think it would close on its own. It even looks better on the inside of her neck that expected too". More proof that Sophia is truly a rockstar. Always doing things in her own time and always full of surprises. The doctor tested her airway with air and water to make sure the opening was leak proof. She passed all the tests. She said send me the swimming videos and my hearts jumped into my throat. 8 years. It took 8 years to hear these words. When Sophia originally got her trach at 7 weeks old, we hope it would be temporary. We soon realized it could be years for her to not need it. Then we started thinking she may always have to have her trach and we adjusted our thought process yet again. Then Jan of 2019, we started on a journey to decannulation. Now Jan of 2020 we finally realizing that our daughter was moving into a new normal yet again of a life without a trach. Our lives are changing. Things and routines and practices we have done for 8 years now were changing and stopping. I haven't had to carry a suction machine around since september. I haven't had to wipe my daughters neck or change guaze since Jan. Each year things slowly changed and our routines changed. Things we literally did every single day have now stopped. Life is ever changing. Now again, there will be new normal routines and changes.

Most people do not remember their first shower or even the first time water ran down their face. Think about that for a  minute. Do you remember that feeling? 

Saturday, my daughter got to feel water run over her whole body and face for the very first time. She is now 8 years old and just got to experience a shower for the very first time. Water- you are no longer our Kryptonite. Water- somethings so vital to life, filled this momma with great anxiety. It was a fine balance between how much we needed water and how protective we had to be over it. Imagine that for a second. For years, we had to adjust how we interacted with water amongst over things like sand, smoke, smells, pets, etc. Now water you are no longer a foe but a chance to belong blend into a new world of things. When Sophia had a trach she had an open hole straight to her lungs. That is now closed. Some previous restrictions are now being lifted. Some will alwasys stay. It like a new found type of freedom in some things. A new way to experience things. Sophia told me she was a little nervous to try it (the shower) at first. Afterwards, she said I was nervous but that was fun and relaxing. Perspective. Take that in! The things people take for granted daily are the things some people experience with rejoicing hearts and triumph. We look forward to this year and all of the other little things we get to experience for the first time with her. Things she will remember for her whole life. 

Right now, the world is in full spiral. It is surreal what we are actually living through right now. A global pandemic. Did I just type those words? I am not sure how to feel about all of this. What I do know is that protecting my daughter and my little guys are essential.  I CANNOT even put into words out of fear is what would happen to our lives if we are affected by this virus. I think the reality is that many of us will get it in time. TIME though is the key word. We need more time between the amount of people getting it and getting better. We need time to figure it out. We need to use this time to regain perspective on our values and families. We all have to do our part for the few that need protected more. I mean to put it blantly- My daughter just got her trach out and we are in protect at all costs mode around here. I am so grateful to be able to be home with them in this time. Loving them, playing with them and keeping them safe and healthy. Pray for my husband and all the husbands and spouses that still have to work daily out there in the unknown right now. 

I invisioned much celebrating over our spring break this year. With all the changes, we have adjusted to the new normal. Not the first time Team Rhodes has been faced with a new normal. We have been practicing extra germ patrol and precautions for years. Welcome to the life of a immune-compromised kiddo. Seriously though, we will find small ways to celebrate here at home because face it, it is the simple things that matter most in this life. She showered in WATER and that is a huge simple celebration. We will continue to find the small ways to rejoice her victory and when the time is appropriate we will make a big splash in our celebrations.

I hope this post finds you all well. I hope it can bring some joy and perspective to you all in this time of confusion and vulnerabilty to us all. We will all come through this time stronger, more focused and humbled. If you need perspective, ask a immune-compromised momma, and if you need motivation look at their child.

Decan a thon

7 weeks old to 7 years old, our Sophia has been on a marathon to where we are today. A decan a thon to be more specific. On February 9, 2012, we started on a journey we had never planned and on September 25, 2019, we have now set out on a whole new adventure. Our sweet super Sophia, now has a naked neck.

We have been status quo for the past few years with Sophia. No changes but things were going well. Plus, I have been pregnant twice in the past two years so yeah we've been a little busy on this Rhodes Family Adventure.  Last October, we went in for our routine scope and the doctors said Sophia's airway looked the best it ever has in years. They scheduled a sleep study for January. Long story short, it was the worst experience I had ever had with a sleep study. I knew it in my gut that it was not a true and accurate representation of what Sophia could do. So I spoke up and reached out to her doctors. They listened to me. They agreed with me and said lets do it again. This June, I was FINALLY able to get her back in for a sleep study redo. What a difference. We walked out of there and I said to my husband that whatever the results say this time I know we gave it our best and I was pleased with how things went with the sleep study people. It took several weeks for the results to come back and our doctors said they were so pleased with the results they wanted to skip ahead to a decannulation trial!!!  I couldn't believe it. Wow. This is a step we have not even considered trying since she was a baby. For the next few months, it stayed in the back of my mind and on my heart. See in the mix of all of this, I was pregnant with our third baby. On a whole different side of things, I was worrying about my pregnancy and new baby on the way. With this pregnancy, I faced a vanishing twin and endured many tests to assure our baby was healthy. I knew I needed to schedule it out after my csection. SO I literally schedule her trial at my 8 weeks clearance from my surgery. As the day approached closure, I started thinking more and more about it but never let myself get too excited or dwell on the what if too long. We were cautious. We packed up and heading off not knowing exactly what was going to happen next. You know when you have wanted something so long and you daydream about that day on long drives alone in the car or in the shower and you picture it in your mind and your eyes fill with tears just thinking about that thing... When it happens its like a daydream. Sophia went into surgery on Weds. Sept 25 for a scope before the decan trial. One doctor literally walked into the pre-op room dancing over her sleep study results. Joking about how they approach decanulation like porcupines make love....very very carefully lol. When they called us back while she was in recovery to discuss what they saw in the OR their tones had changed. Her airway was still complex with some crowding, but they were still confident and cautiously optimistic she was ready for a try. They admitted us to the hospital and gave Sophia some time to recover from the anesthesia. That evening I had the pleasure of pulling out her trach for what I didn't know then would be the last time. With her trach out and a bandage over the stoma we settled in for the evening. She very much disliked being connected to all the monitors and the IV in her hand. She said she felt trapped like the genie in the lamp. Once tucked in for the night, I left to go put the boys to bed for the evening. The next morning as I pulled into the parking garage back at the hospital, my husband called and asked if I had any questions for the doctor. I just said yeah how did the first night go? She (the doctor) starts explaining things to me like water restrictions still apply but you do not have to carry the suction machine etc.... I stopped her. "Wait, what are you telling me right now"? IS Sophia going home like she is right now...untrached? She said YES. I froze. Hung up the phone and raced upstairs to her hospital room tears rolling down my face the entire way. I met Sophia and John in the hallway outside her room and we embraced and just cried. I hugged that girl of mine with every ounce of love I had to give. See for John and I, this was a moment that seemed just out of grasp for so so long and to our Sophia it was....it was just a thing that happened. For years, I dreamt of throwing her this huge celebration IF and WHEN this day arrived. I dreamt of all the bounce houses and balloons and party hats and magical floating confetti. I would shout it from the mountains tops if I could. However, it didn't take John and I long to see that this HUGE celebratory event to us was a little scary and confusing to our girl. Actually, I must admitted John was the one that grounded me first and said I think we need to take it more subtly for her. See, having a trach was all she has ever known. It was literally apart of her. Her normal. Ours too, but it was something we BECAME accustom too. There was no transition time for Sophia it was what it was....her way of life. Having a trach is the only thing she has ever known. She said to us, I don't understand why people are so proud of me and why people are crying. REALITY. Halt the confetti. This girl had never known she was "different" because John and I never treated her as such. We did our jobs. She wasn't naive to her limitations, we embraced and empowered her to own them. It was our way of life. THEN all of sudden, something went missing. A part of her no longer needed. So we calmed down, explained to her that she may see people with happy tears and hear congratulations. Scrambling I told her it was kind of like when a person looses a tooth and they are so excited to show it off, And there's a change because a new one will take its place. I told her this was a change like that. That it wasn't a bad thing that it was there or now that it was gone. People were proud and excited for her for that new change. Before we left the hospital, the nursing staff threw her a little celebration with funny hats and sang a song about "if your trach is out and her neck will surely show it clap your hands lol and she got to change the sign to 48. When we left the hospital she was the 48th person to get their trach out this year. During the party she smiled half smiles and after wards said it was nice. Before we went home, one of the NP that I often emailed about Sophia came in to meet me in person and to express to me that it was my concern and follow through that got us her today. She said she knew when I first emailed that I was a parent that knew what she was talking about and they were so happy I spoke up about the sleep study to get us where we were at today. That was a proud mom moment too. Moms know best. It was then John turned to me and said the real congratulations goes to you Amanda. Not so much Sophia because she was just living life but you. You and us-- you got her here. Talk about tears. All the love in the world to him and his support and love for his family. So not only are things changing for Sophia but things are going to change for us too. So much for us too.

Its only been a few days now that she's been trach free and embracing her new naked neck but things are going great. We are again all navigating our new normal. She keeps asking questions as they come up. Yesterday, I walked her into school along with her nurse for the first time ever and LEFT THE SUCTION MACHINE AT HOME!! Talk about a weight literally off your shoulders, LITERALLY lol. It kinda felt like I left the house without pants or something. She was nervous going into school. Asking if she would be able to talk to her friends the same and do this the same. Its crazy to slow down and see this change from her perspective. After a few fist bumps and hugs from her classmates and some welcome backs, she was good to go. She has the sweet classmates and teacher. They all hand wrote and made her cards and sent her balloons to the hospital. Melt my heart. We probably enjoyed reading their 2 grade thoughtful probably more than she did. I know they all played an important role into Sophia feeling herself back to school.

Now, I am sure there are people that will instantly think it is out and everything is said and done but that is not really the case. We still have quite that journey and healing a head of us. With the trach out, Sophia continues to have an open hole in her airway (neck). It is being covered with a bandage for now. She is gradually learning to breathe fully from her nose and mouth as the Stoma (hole) closes. During the next 6-8 weeks, we have to watch her closely for signs of breathing issues or distress. We have to care for and dress the opening in her neck multiple times a day. We have to check her O2 levels and watch her respiratory rate. In 6-8 weeks, we will go back to the OR for a follow up scope and they will assess then how well she is doing. If her stoma hasn't closed on its own then they will surgically close it for her. There is a good chance she will need the stoma surgery because she has formed new healthy skin at the trachea opening. I am proud to say that many a doctors have complimented me for excellent trach care...clap clap. Then she will have another hospital stay and some recovery time for that as well. Once that hole is completely closed and she is ready we are going to do all the things!  ALL. THE. THINGS. You see over the years there has been adjustments to how we do certain things and some things we could not do. There will still always be certain differences and that's ok too. I imagine over the next several months, we will slowly start adding some of those things and simple joys into our and her life. I can't wait to see her face turn towards the shower, opening play in the sand or at the beach and splash in the pool. Having kids and getting to watch them enjoy things for the first time is one of the most rewarding things about parenthood. Never take those things for granted. A few weeks ago we got the joy of watching our son swim for the first time. So much fun. It fills you with such joy to watch them explore and see them happy. Being able to see Sophia enjoy these new moments in life won't only fill us with joy but exhilaration and liberation. I just can't even express how excited I am for her (and US) and all these new little things she will get to experience over time. Her bothers may never remember their sister with a trach but I know their lives will forever be touched by this experience too. I have been given the best family. This family was meant to be mine and I am so grateful for all these experiences we have had and will continue to have. NOW....BRING ON THE VACATIONS!!!! lol

Where We Are

Its almost been a year to the date that I last posted a blog. That is far too long. Writing here about this whole life experience has always been cathartic for me. At first, it was intended to help keep everyone updated on Sophia's medical journey, easily. Now, its for me. I way to really just get the clutter out. And after a year, man is there some clutter to air out.

Lets recap...

After Sophia's surgery this time last year, we MADE the most amazing improvements. She found her sweet sweet voice. Its still to this day the best thing ever. When you go 4 years wishing to her someone to call you mommy and for that day to just magically appear. Words cannot describe its sweetness. Today, we have quite the jabber jaws on our hands. I could listen to her talk all day. Some days, that just what I do. I love asking her to tell me a story. She makes up stories and she just gets to talking away as I get swept up in the miracle that blesses me daily. Granted, her speech still needs help and we have therapy weekly. She still has a trach and lets face it. Her talking at all and talking so clearly (at times) around a plastic straw in your throat still wows the keenest of doctors. The following May, we had another trip to the hospital to see if she was ready to cap at night in order to get her trach out completely. Here we hit a little wall. She is not ready. We are still capping but we are at a fine line in her care where we are tip toeing between taking the trach out because she is breathing so well and keeping it in because she cannot swallow. Safety first. We are keeping the trach in until she becomes more stable and in control of her swallow and secretions. She is still fed all through the gtube. We will get there. She has shown us that.

 In the mix of all of this, John and I decided we were ready to expand our family of three. We actually we decided this years ago and after a year and a half of trying we conceived in Feb 2016. It was the best thing in the world to tell Sophia she was going to be a big sister. Immediately, she got it. She was super excited. Then as life has its own plan. We started to loose the baby. IT was without a doubt one of the saddest experiences in life. We just didn't one day loose the baby. We had to watch has the baby became no more. I had lost all of my amniotic fluids. See babies our essentially fish, they need this water to grow and develop vital organs. At first, the couldn't explain the loss of fluid. They initially suspected the baby had no kidneys or non-functioning kidneys. It was a two week whirl wind. I was swept to various doctors and specialists for more ultrasounds and tests, each with the same response. The baby would not survive or develop any further without fluid. I was 15 weeks. Critical time for lungs to develop. The next phone call I received was to set up surgery. He was a specialist with a heart of gold. He took his job with the upmost seriousness with just the right about of compassion and tenderness. He was so good. He called me several times on his person cell to assure me and check on me through the process. They knew time was sensitive and the most sensitve timing was to keep a mother from carry heartache longer than she already will. They set up surgery for me on a Sunday evening. I had to be squeezed into the rotation so my actual procedure didn't start until 11pm. The physical pain I was feeling that day kept the emotional pain at bay until I went into the OR alone and was strapped to the table. It was here in that moment, I cried so hard for the baby that would be no more and the baby I will always think about. In those few minutes, there were nurses on each side of me that grabbed my hands and squeezed tight. One, lean down and whispered in my ear, "we care about your baby, too". After that, I was out. I heard them say give her a little more (sedation). Thank you for that. I will never forget that experience. It was again one of the most difficult times in my life emotionally. Children have a way of working so deep in your heart.

Now, I am a few days short of a year since we lost our second child and a few weeks away from giving birth to our third. Life has a funny, warm way of working through the toughest of times. When you expect it least and if you look and appreciate it just right...life is right here.

So here we are... Sophia is continuing to do AWESOME. Talking, growing, starting kindergarten in the fall. As a family, we are settling into our new home and getting ready to welcome a new baby. Sophia is without a doubt going to be the best big sister. We are so excited to find out if it will be a boy or girl. To us, healthy is all we want so we are so praying for a healthy happy surprise. Pray with us and for us. Heartache is hard. Happiness makes it all worth it.                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                            

This year...

I have literally written thousands of words about Sophia! I could and will write thousands more. What surprises me still are the times she leaves me speechless. Sophia has just turned 4 and this past August blessed us with her beautiful voice! It continues to grow and develop. Her words take the breath from mine. This week, we traveled back to Cincinnati Childrens for another around in the OR and for a capping trial of the trach. Sophia went in to the OR with a team of 5 plus doctors who all took turns with various scopes and swabs and biopsies of her airways, lungs, GI systems etc. they placed a video probe up her nose and down into her stomach for 24hrs with a recorder. They gave her 4 injections of Botox into her salivatory glands, and downsized her trach. She came out of the OR very tired and a little grouchy! We managed to cap her trach for 1 hour and 25 minutes before her stats dropped during her sleep. She slept from 530p until 1am straight. The next morning she was able to have the probe removed from her nose. Much relief was felt having that extra baggage removed! After breakfast and a brief walk, we tried the cap again around 10am. Now over 30 hours later we remain capped! Sophia slept through the night capped and stating 98%. Speechless...


This year, this year may be our year. I've grown weary and yet hopeful for THE YEAR. The year her trach comes out. I have never felt so close to a goal as we have now. We were dismissed from the hospital with the cap. We have doctors orders to cap all day and uncap at night while sleeping. She will remained capped for a few months and we will then revisit with a possible decannulation sleep study. She has a pretty significant leak around the trach site. The leak is around the trach at the actual opening in her skin. The cap goes over the trach and forced her to breathe through her nose and mouth. Basically the leak means she's cheating a little. We hope the leak closes around the smaller trach on its own so we can get a 100% accurate true understanding of her successes! My fear is she is relying on the trach leak too much or that it is interfering with her secretion control. We will just have to wait and see. I hate those kind of games. Ideally the doctors said if she can be capped during a cold we can take the trach out. Now I am certainly not inviting you germ breeders into my home but we will let nature take its course. Sophia is becoming a nose-breather! What a treasure most people take for granted- breathing. I am so very proud of Sophia.  She remains the most tenacious, determined  and bravest little girl I have ever had the pleasure to know! Lucky for me- I get to keep her! Here is to this year!! This year! Pray for this year! For growth, strength, health, luck, wisdom. Pray for a girl, this year!! Sophia has always breathed life into others maybe it's her turn to breathe life as it was intended- simply and beautifully!

Go Sophia Go!!!

a few words

I must admit, life it getting in the way on my blogging. This could be a good thing. Life you know is good! I have been feeling a need to write lately. In fact, the idea has come up a time or two to start writing seriously. Become a true blogger or story writer- I find it quite therapeutic to write. Its something I have been slacking on lately and I feel obligated to some degree to share our adventures. Mostly our adventures with Sophia. She, in fact, is our whole life.

Where to start... Well last I updated we had just transitioned over to Cincinnati Children's to start a new medical journey with Sophia. I am happy to report, we in fact made the right decision to switch hospitals for Sophia. The aero team and CHARGE clinic are without better words to say it- AMAZING. These doctors truly know their stuff. Its rewarding to walk into a place and know they have experience and to know they really have Sophia's best interests at heart. The most amazing thing to me about this group of doctors is that they are a true team. They communicate and share updates and ideas with each other weekly. They do not make any decisions or moves without consulting the TEAM first. It truly makes a significant different when everyone is on the same page; especially when dealing with such medically complex children.

This summer we spent a good month in Cincinnati. Sophia had two major surgeries. One to remove her tonsils and check her airway. We had to stay put for 10 days. We were so so nervous about bleeding and aspiration risks from the tonsil removal. My devote husband didn't close his eyes the night before her surgery. The man loves that little girl. We spent one and half days in the hospital and then the rest of the 10 days at a family friends house recovering. We were told she would be just miserable for about a week. Day two/three of recovery and I am fighting to keep the kid on the couch. Sophia is without a doubt the most resilient child I have ever come across. So for the next 8 or so days, we stayed put and really enjoyed some nice and quiet family time together. Its ironically heartwarming how a major surgery can cause the world to slow down and for ones focus to shift.

We had a 6 week turn around before Sophia's next surgery in July. This is the surgery I was threading the most. My husband and I are perfect opposites. Where he freaks, I am strong. Where I worry, he never wavers. We balance greatly between sanity and loosing our $%*T on most days. We pick each other up and that is what matters most. July's surgery is were Sophia had stents placed in her nose for 6 additional weeks. The ENT team went in and basically gave her a nose job. They removed tissues, chiseled away bone and placed plastic tubes to give Sophia an open nasal passageway. For the first few weeks, her nose was a bloody mess and Tylenol stayed on rotation. We even got some pretty gnarly nose booges out of her nose. I mean I am talking gooey, spaghetti noodle long wads of just plan goodness. I was quite satisfied when I was able to really grab a good one! Though in all seriousness the stents did added a little extra worry. Our biggest concerns were her falling or bumping them. I knew it would be painful for her and I was so afraid it would cause more damage. Luckily my fear of them going into her brain were put to bed by the fact they were looped in and out of the same holes. Plus constant suction through the stents increased the work load. It was work. But like anything, time healed. Her nose didn't look so bloody, suctioning became habit and she never fell on them. Relief. Though when that 6 week deadline arrived, I could not have been more thrilled to have them taken out. Bonus- her cute little nose stayed cute!

However, what transpired from these surgeries this summer, I would have never predicted. The goal was to open Sophia's airways. To give her the best open upper airway we could to maybe give her a fighting chance to get the trach out. One week post-op from her stent surgery and I could already start to notice air sounds coming up and out her mouth and nose. It was quite interesting to hear. I kept my cool. It was a few days before the return of the school year when we got our big surprise....actual VOCAL SOUNDS!! You heard me folks! Sophia is NOW making vocal sounds. She has never made true vocal sounds!! Ever! For 4 years, we have asked ourselves if we will ever hear her speak or say our names. And in good Sophia fashion- she blew us away. She just did it! She started making true vocal noise and surprised us all. Including herself! She was so proud. Now, Sophia has always had a great vocabulary. She can sign hundreds of words and learned them so quickly. She has also mouthed words for a very long time. She even invented this clicking sound she does to make sound for syllables.  But for her to just naturally start to try to say actual words---FLOORED. Literally, it went from a few noise sounds to one day we walked in and she was trying to say "I LOVE YOU" to me. Instant sobs. I couldn't believe my ears! It was the most beautiful sounds in the world. Now to clarify, she is not speaking audible as you and I speak and she is still primarily a signer. But to me and her daddy and her nurse and family- its plain as day what she is trying to verbally say to us. It gets clearer daily. She works so hard. Now granted, she is still speaking through a trach so it sounds muffled. Like shes talking underwater BUT folks she is learning to TALK!! A worry, a want, a fear and a pray all rolled into one came true-- The sound of a sweet sweet girl saying mommy for the first time! Now I am the one without words.

Sophia has been trying to make vocal sounds for a few weeks now. I instantly wanted to share with the world, but we decided to sit on this little secret for a while. We wanted to keep it to ourselves. We wanted to rejoice in this beautiful noise. We wanted to make sure it was going to stick around. We our cautious these days. We now oh to often how things can change. We also wanted to steer clear of questions and feedback for a while. We did not want anything or anyone to lessen our experiences with this wonderful news. We also wanted to be sensitive to Sophia. We did not want to get to excited and at all make Sophia feel pressured to do something more than she was ready to do or to make her feel like we were missing something from her before. We still encourage Sophia to sign and learn new signs. Sign language will also be Sophia's first and maybe her strongest language and for this we will always be proud. Now that we have truly processed our feelings and allowed ourselves times to celebrate these new steps forward. We couldn't resist sharing her wonderful news with you any longer.

I guess it really is just something you have to hear for yourselves...

One year ago... "Hi Mommy video 1" https://youtu.be/DINA5tYYiuo

One week ago... "Hi Mommy"https://youtu.be/fUAGfHufEs

I hope you get goosebumps, I hope you understand the significance, I hope you celebrate with us. I just have so much hope and pride for this little girl.  My little girl.

So even though we struggled and had reservations about Sophia's surgeries this summer, we now know the doctors are truly on the right track. We have been going back every 2 weeks for the last month to keep checking her airway. So far we have had great results. Next steps to be determined soon....

What a week

What a week we had in Cincinnati. So much so that I need a week to recoup. Well as I had mentioned, Sophia was going to Cincinnati to have some diagnostic testing done for the A-team. We started the week with a trip to the OR. She was being put to sleep to have all three doctors evaluate her airway. In their words, they've learned that each doctor sees differently and each knows their field particularly. Also, while under they were going to possibly dilate her nasal passage and put a camera up through her nose and into the stomach. This was to be left for 24hrs under hosptial observation. Well, once in the OR and the doctors started to look around they realized that one, the dialation would not be beneficial for Sophia because her airway in her nose had reduced so much they couldn't pass anything of the left side and the right side was tight. Big problem. Dilating simply wouldn't do. Secondly, They also deduced her tonsils and adnoid tissue was so large that on a scale of 1-4, they rated it a 5! This extra tissue as well as the nasal passage prevented the doctors from being able to pass the camera for observation. The only perk meant we didn't need to stay over night in the hospital. The down fall.. Two more surgeries. Can we ever catch a break? On the whole, the doctors felt that from trachea down her airway looked good and promising. The problem is all upper airway. The next morning we were back at it at 7am for another round of evaluations and test. This time it was a video study in which they put a small camera up Sophia's nose and down into the back of her throat. Not pleasant for most people as I'm  sure you can imagine. Sophia was a trooper to say the least. However, again this procedure was cut short due to a copious amount of secretions blocking visibility as well as the tightness of her airway made  camera angels difficult. The doctors were beyond impressed with Sophia's patience and tenacity. The only perk of these appointments being cut short was we were able to take Sophia to the aquarium. She totally deserved it. The best part was Sophia was selected to be the penguin grand Marshall! She led the penguin parade and got to go with daddy to met the penguins on her own. Totally precious! I will adore that memory forever! The next day we were back again for a couple of swallow study appts. These appts went as predicted. Still aspiration. Still no food by mouth. The next day we had the afternoon before Sophia's overnight sleep study, so treat number two- the zoo! It's sad when a week at the hospital is kinda like vacation. A little hospital, a little fun. It's needed. One would be bitter without a little laughter and fun mixed into all the medical jargon and procedures. Overall, I am still pleasantly pleased and hopeful with cinci. I think we've made the right decision in switching our care to a hospital that has a focus and speciality in Sophia's needs. We just now have to put our faith in their knowledge and decisions to help Sophia continue to grow and strive. As on now, we are in the waiting process before we schedule the next surgery. Until then, my big girl is starting preschool. I know it seems like an off time to start, but we and Sophia live by our own agenda :)

a new journey

I can't believe I haven't written in soooo long. I guess in a way that is a good thing because that means I do not have anything to report. For the past several months, we have been in a holding pattern. I talked last about Sophia possibly needing tonsil surgery and we had received mixed consults from various doctors. This left us confused and unsure as to what  next steps should be taken. With one doctor telling us no and another telling us yes and another doctor we weren't comfortable left, it left us twisted. My husband is huge on research. So he did his. He discovered that Cincinnati Children's Hospital was possibly starting a CHARGE syndrome clinic amongst also reading studies from some prestigious doctors from cincy. So we consulted one more time with our pulmonary doctor at Riley (back in October) and she confirmed that Cincinnati Children's would be a smart move for Sophia. She spoke highly about a program called the Aerodigestive team. The A-team we are calling it. Believe it or not, but it consists of a team of doctors working TOGETHER. Communicating together. What the What? The team is made up of ENT, pulmonary, and GI doctors that specialize in their areas. That in itself had us convinced to make the switch. I have spent months with insurance, communicating with doctors, filling out paperwork, and so many phone calls to try and get us our initial appointments with the A-team. Finally, in January I received a call the insurance was pending. A few more weeks later-approved. Finally, last month (after several more phone calls)- a schedule. I owe a huge thank you to my husband for encouraging us to pursue the switch!

Last week, we made our first trip to Cincinnati Children's Hospital. The first day was a formality really. Sophia met with anethesia first to go over her history before taking her into any ORs. Then the girl had an ECHO and EKG. Poor thing wasn't allowed to eat all day because normally they put small children to sleep during these procedures because they can't sit still. Not Sophia. She's a pro and didn't require it. Lastly. we met with the cardiology doctor to confirm she in fact has a bicuspid aortic valve (we already knew this) that was mild and she was clear for the OR. Day 1 of 7 complete. The next morning we were back again at 8 am for a sedated chest CT scan. This went well. A little upset with some cold /procedure-oriented bedside manner but nothing to get excited about. Sophia went right to sleep with a giggle and giving mommy a tickle:) She came out grumpy. We fed her and then walking down the hallway she lost her fed..ick. I have never been anywhere were people are so eager and willing to help you clean up vomit. I literally had two hands over my shoulders handing me napkins instantly and people throwing down puke pads. Poor girl. But do not fear because Miss Sophia was monkeying around a mere thirty minutes later. After some time to kill, we went to meet our first A-team team-member, ENT. Dr. Choo had me at hello so to say. He walked in an shook John's hand, my hand, and without a beat Sophia reached out and shook his hand. He was impressed. In fact on more than one occasion, he repeated how great she looked and how smart she seemed. What got me, literally crying was when he mentioned is end goal is communication and how he loves when his patients come back years later and say "Hi, Dr. Choo". Oh, how we long for that day. Its emotional. Sophia communicated fantastically with sign but to hear her will make me speechless.
What sealed the deal for my husband was the fact that even though clinically her tonsils looks like they need to be removed. He is a totally picture guy. He wants to know how everything is functioning before he makes any decisions to remove her tonsils and is aware it is in fact a major surgery.  Especially with complicated children like Sophia. The best part though is that Dr. Choo asked us to be apart of the CHARGE syndrome clinic. This means we will have a person contact us regularly to set up all of Sophia's appointments and we will meet them all on the same day. More over- THEY ALL SPECIALIZE IN CHARGE syndrome and research. Worth its weight in gold. Victory.

After the meet and greet with Dr. Choo we went on to meet the pulmonary partner in our A-team. Dr. Wood. He is a seasoned doctor who believes his patients are guilty until proven innocent. He end game is to make his patients tax payers. Dr. Wood went over the chest CT with us. He was pleasantly pleased with the anatomy of her lungs. Nothing alarming or concerning popped up considering her history. He used the world optimistic. Next we looked over Sophia. I didn't realize right away but he covered her trach with his gloved hand for a few minutes. While doing so, he looked over at me and mouthed, ''Oh my, this might be a quicker process than we think". WOOT WOOT! He said again that was very reassuring but everyone's guilty until proven innocent. End of day two.

Next week, we are back to Cincy for 6 more days of investigative procedures. First, they are going to put little miss asleep for the 12 time for a flex bronch. All three doctors from the team will each take their turn looking into Sophia's airway. The admitted their previous faults and realized that each doctor see things differently and more eyes are in fact better than one. After each looks around, they will put a camera up through Sophia's nose and down into her airway. They will leave that over night in the hospital to observe her breathing and reflux and gather more information. The next day we will have two types of swallow studies. We will meet with the A-team the following day and lastly we will have a sleep study. This will be an exhausting week. The doctors are doing all of these diagnostic procedures just to get to know Sophia before they make their game plan. You know what I really like, they have already had two conferences discussing Sophia before anyone laid eyes on her. Amazing. The ultimate goal (like is has always been) is to get the trach removed, her eating, and speaking. I am so far pleasantly pleased and very hopeful for what these new doctors have in store for Sophia. Its the total package really. And no one deserve a better package than Sophia. That kid has a heart of gold and willpower to envy. I mother and see her daily and yet I find myself looking to her in awe. The girl even signed to me the next day after the appointments that she had fun with mommy and daddy at the doctor. smh. what kid. Mine of course. She is one of a kind.

Please pray and send good vibes as we continue to embark on the next leg of our tremendous journey with Sophia Kay.