Today you are turning TWO. Time has flown by this year. This year has all been about recovery, acceptance and adaptability. Each day we are noticing your improvements. Minor things that normally people don’t catch. Don’t think we don’t notice Miss feisty pants. There is not enough adjectives to describe how amazing you are and how much fun it is to see you blossom. Your giggle is addictive and infectious and I try everything I can to make you laugh on purpose. You are always trying to get into the fridge and when you see an opening you RUN in your walker as fast as your feet will let you. You have learned escape tactics like opening the gate or how to get on the dogs good side by offering them your vegetables. You love to bug your sister during bath time. As soon as you hear the water running in the bath tub you have to be right there at that very second. You love to knock all of your sister’s toys off the tub ledge. I always hear “Sadie NO!” followed by giggles.
However, unfortunately you have some limitations. You are working on this of course and as you get older you will learn to control your body moments. You struggle with coordination and balance. Two things that are not easy to master. At the beginning of the year you started getting really frustrated with PT/OT. You seemed to exhaust yourself and then refuse to move. Per insistence of your OT and PT therapists they requested we do an internal scope (Upper and lower EGD) look at your belly and your throat. PT/OT didn’t want to hurt you when they pushed you further with your therapy. This required you to be under general anesthesia. Which is always scary when you are small. So April 2016 we had it scheduled. The good news is your GERD was healing nicely. You had very little damage and your belly was cleared. However, they discovered you had Laryngomalacia. Fortunately they decided to do the surgery to repair at the same time.
You recovered from surgery nicely. It has been considered that 75% of your issues are directly related to the Laryngomalacia. They think that is why you had the silent reflux and had so much trouble gaining weight. But also the reason why you had speech delays and will continue to struggle. Your once loud stridor is no more. You no longer sound like Darth Vader. (At least you were a cute Darth Vader.) Your food intake has increased and you seem to tolerate your PT/OT sessions better. Since April you have been showing so many signs of improvements.
So where are we now? They are setting you up with a fancy Gait Trainer so that you can learn to walk better. They are having use a compression vest which feels like a big hug. Also sometimes they are putting arm braces so that you won’t turn your arms. As for meds you are on a very small amount of Nexium but we are likely going to keep lowering this once we get the GI’s permission. We are slowly switching you to whole milk from your pricey organic toddler formula. After we are done with these cans no more formula! You eat EVERYTHING you can get your hands on. Some of your favorites include pancakes, Baka’s apple pita, salmon, black beans, cookies, eggs, oatmeal, and mac and cheese…etc. etc. You LOVE it all.
One of the frustrating questions, and thank god it has been much less frequently, is when people ask me what is WRONG with you? I simply say there is nothing wrong with Sadie. She is healthy, happy, learning at her own pace. She has the most amazing support team. 2 PT therapists, 1 OT therapists, and 1 Speech therapists. She has the most amazing loving caretaker her Baka. She is spoiled with love and kisses all day and pampered like a princess. You are amazing and people should know that. Daddy and I brag on your accomplishments whenever we are given the opportunity. We want you to know how much we love you and how proud we are of your progress. We love watching you flourish. Keep it up my love.
With love on your Birthday,
Pictures in review for 2015-2016 notice the posture improvements over the last year.