She has only once instance of swelling in the last 3 days so we feel she’s out of the woods! We are so thankful that she is doing better and has returned to her happy little self. We’ve been doing a happy dance of Praise that she did not require surgery this go around for a new shunt! She did great at PT this week and enjoyed her dance class with her friends. Each week I see her doing something new and trying to follow along with the group. We’re very proud of her continuing to progress and showing interest in moving more.
We are making further adjustments to her dancing pants this week and still trying to determine if this is the best way to go for her or she we be looking into another adaptive garment called a SPIO. We tried the other garment on her this week at PT to try it out and she did great, but I’m not ready to make the leap to yet again another piece of gear unless we absolutely think it would be the BEST thing for her. I’m shortening her straps and considering shortening her pants a little more and then seeing if that improves her range of motion. Determining which items help her mobility the best is a constant moving target. We want her to be able to wear the gear at home so she can practice pulling to a stand with correct leg and feet position, but he current “dancing pants” are too hot to keep on her. (Imagine wearing a wet-suit all day and how hot you’d be just doing minor activities). But the current “dancing pants” do help give her further support around her knees until we cut them shorter, which I’m thinking of doing this week. Does she need this support? Is this a deal breaker?
The next item we’ve tried, but not purchased yet, is a SPIO garment, which is much cooler, and she could wear easily everyday with her strapping, but it will have no knee support. It’s like a vest that she wears under her clothes that the strapping would attach to and then down to her legs. It is also beneficial because it adds torso support and helps link her torso to her lower extremities. Soooo, which is better? If we go with trying the new adaptive wear it is yet again another purchase, i.e. dealing with insurance, financial assistance groups, etc… I think they will be frustrated with us that we are on our 3rd attempt to get things right for her….My early intervention specialist encourage me that this kind of trial and error is how things get worked out, but it seems so wasteful, is such a hassle and is very time consuming. I want to find what works and do it FIRST, LIKE YESTERDAY so she can not loose more time in her development! I wish their was someone or a group that could lay out ALL, ALL! options before me, tell me the pros and cons and we could try all the equipment there and THEN make an educated decision! Wouldn’t that be nice…. it makes too much sense, right? Oh well, I may just have to invent such a place to help for future parents out so they don’t have to go through what we’ve gone through (and we’re still not done) to help out our precious kids.
Please keep us, her parents, in your prayers; we so need to have wisdom to know what to do and when to do treatment, therapies and what adaptive equipment she needs. It may feel like a moving target to us, but we know our God know just how to hit the bulls-eye! Pray that He guides our thoughts and decisions so we always make the correct choices for our precious Rhema. Blessings to you all, our dear friends and family who pray, you are cherished and appreciated!
PS. Something FUN: We will be posting soon some pictures of her in the dance costume she will be wearing in November for her dance recital! It’s a sneak preview to the cuteness coming soon in the Fall! 🙂 Stay tuned!