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....
