Our story started long before the diagnosis nine months ago, but that is the official starting point now. This morning we went to see the endocrinologist for a follow-up appointment. She sent us down to radiology to get yet another bone age scan of Ali’s wrist. The doctor called not much more than an hour later and told me that the bones had barely budged (still some room for growth), but that they appear thinner. Lower than normal bone density for her age has been a concern since Ali was three years old. Yet another piece of the puzzle along with several others that no other doctor ever put together before I finally spoke up a little louder last spring.
With this information, the doctor recommended continuing the same dose of growth hormone shots daily (what a trooper!) as well as begin a low dose of estrogen, in pill form, every other day for the next four months until we go in for another appointment. The doc hopes to avoid the bones closing too quickly by starting with a lower dose of estrogen but at the same time reap some bone strengthening benefit of the hormone. As long as the growth plates are fully closed, she wants to continue the growth hormone for any possible extra boost in growth. Her current height is 4’10”. There’s nothing wrong with that, but if it’s at all possible to get a little more height in this world that seems to be built for average to tall people, then why not? It’s easy to say, “Accept me just as I am!” But the truth of the matter is, most people really don’t. I know first-hand that looking younger than you really are when you’re ready to start taking on the world is a real pain in the ass. People don’t seem to take you seriously or give you a second thought because they assume you’re so much younger than you are. It’s no wonder we short people have to have such booming personalities!
We also found out that Ali’s case was presented at a quarterly conference! Her karyotype is about a mile long and one of the most complicated forms of Turner Syndrome out there. Her “condition” has reached celebrity status. I wish it had reached this status years ago. I know we can’t change the past, and it’s not going to help wondering about the “what ifs” but as a mother who only wants the best for her kids, I can’t help but feel disappointed in the medical profession for not recognizing all of these things and recommending genetic testing years ago. Maybe, just maybe, we could have been past this point and well into estrogen replacement therapy by now with all the benefits thereof in full swing.
For those who stumbled upon my blog post via internet search results, feel free to leave a comment to let us know what brought you here. I notice a lot of searches for the phrase “Turner Syndrome pictures”. I was equally curious but also relieved to find that hardly any photos found as a result fit Ali at all. Maxillofacial structure matches a little, but that’s really it. She’s a beautiful young lady with inner beauty to match! Shame on anyone who can’t or doesn’t take the time to see that in her. Our bodies are but a vessel; it’s our spirit … our soul that makes us who we are. Anything else is just a perk or an inconvenience – sometimes both in a strange sort of way.
Keep being strong, Ali-Bali! We love you!!! ♫ Princess Ali, Ali-ah-she, Ali-ah-bah-bwa! Genuflect, show some respect, down on one knee. ♫ (Quick! Can anyone name the movie I modified those words from??? …and Ali, you’re not allowed to play this one!)