Thursday, March 1, 2012

The Neurologist

Yesterday was Jie Jie's first consultation with her neurologist, a woman with a 5 yr. old adopted from Korea. She seemed experienced and competent and great with Jie Jie and with me. She and her dept. head feel that Jie Jie should be sent to the Spina Bifida clinic. Jie Jie does NOT have spina bifida, but they believe that some of her issues are similar enough to be best served there. These issues are peripheral to her main special need. This deptarment will put me in contact with people who can help me with resources. I'm about to step into a new world.

One of the things that has had me very worried is what to do when Jie Jie out-grows her stroller but still needs it. She most definitely doesn't even come close to needing a wheelchair, but she cannot walk more than 1/2 - 1 mile without pain and limping for the next few days. Once she's taller, she'll do better because each step will cover more ground, but for now, she's still the size of a big 4 year old. I looked online at special need strollers. They are insanely expensive!!! They are also pretty ugly and don't have much seat padding, which is essential to Jie Jie. The most affordable ones don't recline and I like that option so Jie Jie isn't sitting on the same part of herself for too long. I'm not getting exercise right now, the real kind where it feels a bit aerobic. It's hard to push her stroller fast enough without straining my shoulders and back. I was thinking of looking for a jogging stroller, one with the really big bicycle tires. I'm going to start checking craigs_list.

Since turning 8, I get even more reaction from people who ask Jie Jie her age. If they ask Jie Jie directly, they don't believe her and look at me for her "correct" age. When I tell them she is, indeed, 8, they comment. I have mixed feelings about this. Often it's kind of cute, but will Jie Jie realize that everyone thinks she's a toddler making up her age? Will she ever start to mind being so tiny?

Actually the word is short, not tiny. Jie Jie isn't petite with dainty hands and skinny arms. She even has quite broad shoulders. Bit's are pieces of her are different size ranges, for example, her feet are the size of a 2-3 year old's, her lower legs are size 2-3 but VERY thin, her total leg length fits size 5 leggings, but not pants. Her shirts are size 5 now, with some growing room in the sleeve length, but the body length and shoulders are perfect. She wears size 3-4 skirts and one 6 skort because the waist is tight and it's meant to be worn very short on a taller girl. Dresses are hard, 4-5 but depends on the style and length.

Like all parents, I wonder what the future holds for my child. I wonder if I'm making the best decisions concerning all of her care. Yes, she's happy, and that makes me feel great, but the decisions I make now will affect her entire life now and when she's older, and I definitely don't want to make a grave mistake.


Anonymous said...

I would love to help with the money needed to get her a stroller
I don't know if you can see my email when I comment but need a way to contact you If you give me the honor to help.


Anonymous said...

I went back and looked at your trip to China to get her. I had forgotten you were with Donna.
I work with one of Donna's good friend. Lucy. Small world.


Cristy said...

You may want to look at a Bob stroller. It goes to 70lbs and is a jogger, but very comfortable. We have one for Celia as her wheelchair is so bulky. Also I like the special tomato stroller although they are ridiculously expensive.

Renee said...

I agree. We have a BOB bought for my two yr old home from China since May, but my 50 lb six year old still rides in it comfortably all of the time. They are pricey but good deals can be found on closeouts on eBay!!