Because the photos were on Matt's phone, I didn't get around to posting at the time, but we were delighted to learn that Mira's first long appointment for her custom formed seat insert for her chair wasn't going to have to be delayed because of her hospitalization! Rob was able to do everything he needed to do while she was inpatient, coming into her room with the chair a few times throughout the day, and having her spend some time sitting in it checking for hot spots.
That meant that yesterday (which is, by the way, Krassimir's 13th birthday! I'm now the mother of
two teenagers!) the girls and I were able to go for the final appointment where we got to add a few accessories (like a head rest and a tray), and bring the chair home!
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| Here we all are, including camera-smile-Gloria, waiting around while Rob was working on fashioning the tray. |
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| Time for Mira to eat. Thanks for helping, Gloria! |
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| Rinnah and her older sister... |
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| One more reason why we love Big Blue. Fit two Zippie Iris chairs in the back? No problem! Though I AM grateful to Leah for reminding me to take Krassimir's chair out of the back of the van before we left. We could probably have figured out a way to get everything home, but this was MUCH easier. I love it that the chair we found for her on craigslist last March is an identical chair to the one she got for "real." It's just a different size and has different attachments, but the base chair is the same brand and style. |
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| Mornings full of appointment can really wear a girl out. (Love the play-food soda bottle! And her shoes. She picked them out herself this morning.) |
Mira's chair has the potential to be very good for her, because it will give her a regular way to spend lots of time vertical, which is just how the human body is designed to work best! It is less cumbersome than what we rigged up in Sofia (although, Adam, I have to say
everyone who's seen the chair situation we configured has said it was just about everything you could have hoped for!), it's pink, and best of all...
now it is easy for the girls to do her hair!!! First thing after getting home, her sisters (and their best friend) swarmed around her and scurried her out to the project table where they proceeded to give her a full spa treatment. She got her hair done, lotion on her hands and feet, and got to spend the afternoon surrounded by the other little girls.
Wow, Mira looks so much more her age with her new weight gain. Even though the doctors said she wouldn't grow, has she gotten any taller? Will the rapid weight-gain stress her bones? One of my daughters got scoliosis in the first few months home because of rapid weight gain. Luckily, it wasn't too bad at all because she reached her full height in that first year and it wasn't much.
ReplyDeleteIt's hard to get a good height on her that can really be used emperically because of how impossible it is to 1) lay her on her back (because of her severe scoliosis and kaiphosis) and 2) get her body stretched out straight. Some days she straightens more than others... We know she IS putting on height and not just girth, but are just not clear how much. We are glad that the nutritionist recommended at our last visit that we taper her feeds down just slightly. I feel more comfortable with that!
DeleteLove the new ride :-) I also love how much Mira looks like a little girl now instead of a... instead of a victim. I hope you know what I mean; I kept trying to think of another way to put it and that was the best I could come up with. I mean, I know the neglect she suffered will affect her for the rest of her life, but I love how she looks less and less like a "picture of neglect." It's amazing what love and care can do.
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