I would rather suffer through an hour of crunches every day and cut out refined sugars and saturated fat than wear anything resembling Spanx® all day long! I quite enjoy comfort and the ability to breathe freely! Do women realize what all they are smooshing around inside? “Spanx Syndrome” anyone?. 
NOTE: Photo – not Spanx brand and not me!
Pink ribbons. Race for the cure. Breast cancer gets so much attention. That’s great! However, other cancers are pushed to the back of the bus – like childhood cancers. Watch this video. Share this video! Make this a VIRAL VIDEO! If Kony 2012 can do it, so can we!
You may think childhood cancers get plenty of awareness through St. Jude’s, but the funds they raise directly are distributed for research for other catastrophic childhood illnesses as well as cancer. Invisible children can be found in more places than just Uganda. Cancer continues to kill so many children because of inadequate funding to support adequate and timely research.
There are so many things that deserve more awareness – deserve to go viral. Lung cancer is another! Kudos to those with the enthusiasm to take up a cause and run with it far enough to get that much attention (good or bad).
This wasn’t meant to be a thoroughly researched post. It’s simply something that came to my mind and I let spill onto a post. It’s not meant to cause a debate, and I’m not diminishing the importance of any one cause in favor of another. Equal awareness opportunity to everyone! 
Albeit a short weekend, it’s still a day off! As of this moment, I have 37.5 hours left before I have to clock in again. About 14 of those hours will be spent sleeping. How much can I do in 23 hours? For starters: this blog post!
There are so many things I need to get done. One might think that just because you have time off work, you must spend all of that time doing personal things that need to get done. I protest! I think it’s important to spend at least half of your time off doing things you enjoy doing as well. I enjoy being lazy resting. I just worked 11 days in a row, including 50 hours in the past six days. I think some rest is not only well-deserved but downright necessary!
I have a couple of movies I bought for $1.99 each at a nearby Blockbuster that’s closing. I plan on watching at least one of those. I also must give my seriously neglected camera a workout. I long to create a new piece of jewelry, too. However, you can’t force creativity to happen in a small window of time. So that may not happen … unless I watch movies at the same time. I do enjoy multitasking!
The main things I need to do are office related (including taxes). After working so much, personal office work is the last thing I want to do, though. 
Nope! Twenty-three hours is just not enough time! Once a new manager is in place and the new staff is put on the weekend schedule, I think I might press for a full 4×10 work schedule so I can have my Sundays back. Having a full two days off in a row is more important to one’s mental well-being than I realized.
Vive le weekend!
After two (or has it been three?) weeks in a row of mandatory five hours overtime with a max of ten (and of course, I do the full ten), I decided to take my full day off yesterday and not start before my scheduled late start time today. I didn’t even touch my own computer in that time. Refreshing and relaxing!
Experiencing that feeling made me want to rethink my goals and schedules. To get everything done, I generally multitask or switch gears quickly several times per day. My goal of five blog posts per week is now ridiculous in my head. I mean, who am I posting for? Why is it important to gather “followers” to my blog? What self satisfaction do I really get from that? I’d like to think that someone out there finds helpful information in some of my posts, but often, I post to ramble. So my goal is now modified to three posts per week. My weekly photo self assignments has been modified to at least twice per month.
Finally, I’m still pushing for a modified work schedule. The 4×10 (four ten-hour days) schedule is becoming more popular and has been mentioned as a possibility for the department I work in as well. Since I work two half days per week, I’ve suggested a twist on this for myself: 3×10 + 2×5. So five hours on Sunday afternoons and Wednesdays, and ten hours on Mondays, Tuesdays, and Fridays with Thursdays off. Then I would still work the first Saturday (ten hours) of each month in exchange for the preceding Monday off. Ten hour days may sound like a lot to some of you reading, but I’d rather get work out of the way like this and get an extra day off to relax and feel more like this…
P.S. I clocked in today to find that we now have mandatory overtime of TEN hours overtime this week. It’s a good thing I already worked an extra two hours on Sunday. 
What happens when you’re sick and shorthanded at work? If you’re me (and I am), you work 9.5 hours in your PJs and robe! This should absolutely count as going beyond expectations.
Me today…
I’ve always had this feeling that whenever somebody complains about something hurting, they’re perceived as whiners and just need to get over it. So I generally don’t complain too much about pain or make a big deal of it. Instead, I try to push through the pain without making a lot of noise about it.
I’ve mentioned my knee pain before, then I just let it go. It started late September, and I thought it was finally starting to do better. That was until I walked around the zoo yesterday and regretted it later that night and still today. The same spot on my left knee, low and to the inside, KILLS! It’s worse going downhill or down stairs than up.
I will eventually go to the doctor. I’ve been once before. I’m pretty sure it’s chondromalacia patella. They sent me to physical therapy, where they discovered there were many things I couldn’t do because it caused more pain. It was a waste of time and money.
To really see what’s going on, they may want more than an x-ray (affordable with insurance) like an MRI (not-so-affordable even with insurance). If they find that it’s not something easily fixed with R.I.C.E. and physical therapy and can only really be relieved with surgery, that’s also not-so-affordable even with insurance! We just finally got out from under monthly payments on medical bills. I don’t want to have to make them again. I would feel guilty putting yet another expensive burden on our already tight budget.
That’s not the worst of it, either. The pain is one thing, but the frustration over the resulting limitations is another. This affects my photography as it limits my motion. I like to get down low for angles not normally seen. That’s now extremely difficult. I like to get out and go places that require a lot of walking. Yesterday proved that to be painfully regrettable. I can easily see how people who suffer debilitating injuries can become depressed. 
So, yes, this knee pain I have is having a pretty big negative affect on me. I try not to complain about it, but I’ve been stuffing it down for so long that I had to let it out here. IT HURTS! It’s not an excuse to get out of things, which should be apparent by the fact that I try to do things in spite of it. It’s not a ploy to get pity attention because I loathe that type of attention. I’m just tired of trying to pretend that it doesn’t exist.
Now that I got that out of my system for the moment, maybe I can get back to my regularly scheduled programming … work, work, and more work. 
Does this ever happen to you? You feel that ache all over, and your throat starts to hurt, and you just know you’re going to be miserably sick for at least a week. But wait! You wake up the next day, and your body’s all, “PSYCHE!” You feel completely fine! I searched the internet for this, and while there were no solid answers, there were many replies stating the exact same thing happens to others. A complete mystery!
However, we all know the story of the boy who cried wolf. So I’m popping open a can of chicken noodle soup and taking my ass to bed early tonight.
On Tuesday, September 20, Ali saw the endocrinologist for a routine visit. Another inch! She is now 4’11″ and though the doctor was ready to recommend continuing the growth hormone shots, Ali said she’d rather not. She’s just done with it. She’s happy that she made it to the height her pediatrician had predicted when she was very young. She has noticed growth in her hands and feet, which is something that can continue to happen even after reaching maximum height. So no more daily growth hormone shots! The estradiol (estrogen replacement) will remain at 0.5 mg every other day for now, which the doctor said could still be working on its own to cause a little continued growth. If it gets her to an even five feet, great! If not, she’s perfectly fine with where she is now.
We went to Children’s at Parker Adventist this morning for a blood draw. Time for an annual check for cholesterol, diabetes, thyroid, and celiac disease. These tests were all normal last year, and we have no reason to believe they’ll turn out any different this time.
I don’t post a lot about this because Turner Syndrome doesn’t define who Ali is. It’s something that exists in her life, but it is not her life. Laughter, kindness, and theater are her life. I’m very proud of how she has handled all of this knowledge. As flabbergasting as it may be, we know there are far worse things that she could be dealing with. She’s happy, healthy, and active with no abnormal limitations. That is a fortunate thing!
If your interested in my first post about this, which includes a lot of details, you can read it here.
As we watch our children grow and marvel at their accomplishments and milestones, there are other parents who will never see as many of those milestones achieved by their children because they’ve lost their children to childhood cancer. It’s hard to think of a young child lying in a hospital bed battling cancer while our own children of the same age are outside playing, participating in sports, dancing, performing in the theater, riding a bike, running around the park – the list goes on and on!
Once a year, something so special happens here in Denver for the children battling cancer and for the families of little angels: Miracle Party
To help make this happen, you can VOTE in the Pepsi Refresh program. The ideas that make it to the top 15 get the money. Miracle Party is currently at 22, and voting continues through the end of August.
I leave you with this video from the 2010 Miracle Party:
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!)
