One year ago, I was getting checked into the hospital for what would end up being the longest, most terrifying 12 hours of my life.
Tomorrow we will celebrate you. All that you have done. All that you have learned. All that you have overcome.
One year ago, we did not know if this moment would come. But it has. And as many times I try to say it's not happening, as much denial as I might be in (and continue to keep myself in) you really are turning ONE YEAR OLD!
You have proven, time and again, that science doesn't know everything. You have proven, time and again, the power of prayer. You have shown everyone that "supposed to" and "not supposed to" are just sayings. You have shown us that chances and odds have two sides - and you have been on the top side every time.
I am SO very proud of you and how hard you have worked over the last year. You have learned so much and continue to surprise us every day with the things that you are still learning and working toward.
Medically speaking, you are leaps and bounds ahead of where all of the specialists expect you to be. Your weight gain has been right on track for non-medical babies - which continues to surprise the dietician at every appointment. (You're "supposed to" be below the curve and not gain as fast because g0tube babies have a hard time keeping up). They adjusted your feeds last week so that you are getting a larger amount during the day and less at night so you can start to adjust to waking up hungry. The speech therapist is happy about that because your swallow strength has stalled - mostly because you wake up full and have no interest in eating. We go again for a swallow study in February and will hopefully get clearance to start you on soft solids. Your EIGHT teeth show that you're ready for chewing on things.
Your lungs are doing so well and you are now spending all of your awake time with absolutely NO ventilator. Even during naps, the nurses have let me know that your breathing is staying steady and strong. (Babies with apnea issues aren't "supposed to" be able to breathe on the own while they're asleep). The pulminologist didn't want to change anything at the last appointment as we head into winter months and just said we need to stay focused on keeping you healthy over the winter. The ENT was pleasantly surprised to hear that you have only had two ear infections so far. Apparently, that's unheard of trach/vent babies! (You're "supposed" to have them fairly often because the fluid doesn't drain off of your ears the same way).
You PT and OT continue to be overly impressed with how quickly you learn new things and understand what they want you to do. Although you have learned that pitching a fit will get you out of (or at least shortened time) with some things... You LOVE to practice standing up and playing in your jumper. You can push yourself across the floor with your legs, but still don't like putting a lot of pressure on your arms or elbows so aren't really crawling. But you can move. Your hands and fingers have gotten so much more flexible and the range of motion you have in your legs is amazing.
You still haven't found anything you don't like to eat but sweet potatoes and butternut squash are still your favorite. You really like for us to mix carrots and apple sauce together and now won't either of them on their own. You've starting munching on teething cookies in the last couple of weeks. It took you a few days to get used to the texture and having a chunk of something in your mouth (the first time you took a bite and it came off in your mouth you had a mild panic attack trying to get it out!) but now you love feeding them to yourself.
You now sign "more" and "finished" all the time - and about 95% of the time appropriately. You also sign "up". You kind of dropped off on signing "eat", but will now click your jaws together when we say eat. We're working on learning to sign "Mom" and waving hello and goodbye.
You are still one of the most good natured babies and love getting peoples' attention so that you can smile at them or play shy. People with glasses are your favorite, especially if they are close enough for you to grab their glasses. Peek-a-boo is your favorite game still but lately you've gotten really good at rolling balls. You love music and will often times start dancing, even when there is no music playing.
You click your tongue, blow raspberries, and give kisses. You blink your eyes whenever we ask where your eyes are and sometimes will scrunch your nose when we say "nose".
You are loved and you love others.
I am so, so proud of you Baby Girl. I can't believe it's already been one year, and at the same time it seems like you've overcome a lifetime of struggle in that one year. Keep going.
