Oddities, strangeness and control

It is odd being the parent of a child with special needs like Turner Syndrome. After all, she doesn't look like she has special needs. She has two workable legs, she has two workable arms. She has all her fingers and toes. She has two ears, two eyes, a nose and a mouth. Oh, yeah...she has a mouth. What a mouth!!!! She is not developmentally disabled and is, in fact, quite bright. Okay, sometimes too bright for her own good. Matter of fact, too bright and too mouthy sometimes.

Nevertheless, she has special needs. I'm still getting used to that.

Organization is a big thing. Knowing where I need to be, when I need to be there, what I need to take and who I need to take with me.

I tried the calendar and contacts on my computer. Unfortunately, I would go to work, need to make calls and didn't have the correct info with me.

So, I tried a notebook. Kept losing my ink pen and who can really read my handwriting. Trust me, there is a reason I type everything I can.

So, I thought of a pda. Unfortunately, they are expensive. The iPod Touch was my solution and it has been a lifesaver. Contacts and calendar synced with my home computer. I found a database app where I can create different tables for info - my mother's medications and drug allergies, Bird's medications, doctor visits and test results. I even track height and weight for her in there.

I use the stanza reader and download books to read while sitting in waiting rooms. No, I'm not completely organized but I'm getting there.

Since I can't afford a personal assistant, I am doing the best I can. For example, so far this year, these are the appointments I've had.

Jan 7 - psychiatrist (which ended up being canceled due to weather so we did a phone consult)
Jan 18 - geneticist
Jan 20 - Bird to the dentist (where the dreaded B word was uttered...braces)
Jan 21 - my mother to the doctor
Jan 25 - appt for my mother at a senior citizen's housing complex (she wants to move where there are more people her age and where I don't keep turning the heat down to a tolerable level)
Feb 1 - me to the dermatologist
Feb 4 - psychiatrist
Feb 17 - pediatrician for a problem with Bird's ankle hurting
Feb 17 - orthopedist for a problem my mother is having with her shoulder.

Yay!!! I'm done until March 11, March 29, March 30, March 31, April 5 and April 29th unless Bird ends up needing to go to a specialist.

My life is on the iTouch.

Literally.

No, really.

After I was in the hospital back in October (possible H1N1 and pneumonia...it wasn't fun) and was put on steroids for a while, I gained weight. I'd been struggling trying to lose much needed weight anyway and this just made it worse. So, yes, I was one of those people who made a New Year's resolution. But, I made it an action plan. Had an app named Lose It! and I started entering what I ate. Everything I ate. Then, because I have some obsessive tendencies of my own, I carried it a step further. I created an excel workbook. One tab tracks weight (with a graph with trendline for those wobbles when I go up slightly). Another tab tracks BMI. Then there is the tab where I enter the daily average of a week's intake and compares it to the optimal diet. I can see with this where I need to make adjustments in my diet. Another tab tracks measurements in key areas and gives me a cumulative weekly change. Final step of my action plan? A Wii. Yes, I bought a Wii and Wii Fit Plus. I do my best to do some every morning and every evening. A pocket pedometer helps me track my steps per day. I do yoga, strength training, balance games, aerobics. I also bought Skecher's Shape Ups which are amazing! Really, I cannot brag on these shoes enough. I have arthritis in my back and, when I walked too far, my left thigh would go numb. Since I've been wearing these shoes, my back hasn't hurt and no numbness. They are absolutely and completely amazing.

Since I got out of the hospital in mid-October, I have lost 15 pounds. Since Jan 1, I have lost 10 pounds. Since Feb 1, when I started the Wii, I have lost 7 pounds.

My action plan is important to me. Part of that is because of the good results I've been getting. Part of it, though, is that I am in control. I can control what I choose to eat. I see almost instantaneous feedback on how I am doing. I eat too much of the wrong thing one day, it reflects in my weight the next day. I know if I eat spaghetti, I am going to feel sluggish the entire next day. If I eat tomato soup, I will bloat up a little from the higher sodium content.

I am in control. And control helps.

People may not look at Bird and see special needs. They may look at her and treat her like a 9 year old. I can't control that. I can't be responsible for that. But, I can control my activity level and my food intake. I can be responsible for that.

That's another silver lining right there. Those sunny streets are all over, if you just know where to look.