Tuesday, February 21, 2017

"Bath" time

We are still bathing Tsvetomira simply with a washcloth wipe-down while she's laying on her lovely gray memory foam cushion that goes wherever she goes. Someday I would love for her to be able to be IN a bathtub, but at the moment that's still a little scary.

Her hair wash is done over a very absorbent adult size diaper, which works surprisingly well. She's drying off here with her special hoodie towel made by a friend of ours from church.
 Every single one of our children has been given one of these as a baby gift. Our friend makes each one she gives special for that child - she doesn't just have a pre-made stash - so that makes them extra special. WE love them because having a unique towel for each child makes it a lot easier to reduce the number of times we have to wash towels! It's just fine to use your own towel a few times before putting it through the wash.
Hanging here you see, on the top row from left to right, Tsvetomira's, Evania's, Owen's, and Krassi's. On the bottom is one lone house towel, then Bogomila's, Rinnahs, Leah's, Reuben's, and Gloria's.
 The towels are kind of a big deal for the kids around here, and the last few times we've added someone to our family, there's a big debate over who gets to help open the present that we know has the towel in it!

Here's my pretty girl all fresh and washed up. She does very well with her bath - you can see how relaxed her face is.
I've chosen to share this photo to help show how very misshapen her spine is. Even from this view you can't get a full sense of it, because it also curves in a c-shape from side to side. It's pretty intense. What's perhaps more incredible, is that every single one of her internal organs that's been checked out has been found to be properly formed. It only confirms to us (and the doctors we've talked to agree), that the shape of her spine is purely due to circumstances - she was placed in this side-lying position, and her body grew under the pressure of gravity to match it. It's likely that she was rarely rolled over in her early years, and this explains the sag to one side of the spine.

Two of our friends gave birth to baby boys yesterday. What an exciting day. ;) Both of those little boys are going to be held lots and lots, and likely no one holding them is going to be thinking at all about the innumerable benefits those newborn boys will receive from that holding! They will receive all of the psychological benefits of human touch! Their bodies will grow in a well-balanced way because gravity will have a chance to work evenly from all sides. Their bodies will grow strong because they will be given, little by little, the chance to bear weight, and use their muscles, and stretch their limbs. When I look at Tsvetomira's body, I see the mark of gravity and time, almost as a physical presence, as though they pressed their hands so firmly for so long on her body and it had no way to resist the pressure.

So WE are now working every day at giving her what she did not have for so many years.

Almost every diaper change is a chance to pick her up for a few moments. I always feel like I'm holding a porcelain doll when I have her in my arms. She has no way to tell us, but every time I hold her, I think of the head-rush you get when you sit up too fast. Is it like that for her to be vertical? Does her heart, her circulatory system, have any concept of what to do with verticality? I am very careful to be mindful of the relationship between her mouth and her throat, because it is only moments before too much saliva pools in the back of her throat if she is not held properly. We are not able to snuggle like this for very long at a time before it's obvious that she's uncomfortable, but at the moment, this is some of the most important "work" that she is doing every day, and my hope is that she, too, will receive many benefits - first of all, the feeling of closeness to another human being (and not just any other human being, but her mommy!) - but also the benefits of different movements, different pressures, which hopefully will tiny bit by tiny bit prepare her to be able to tolerate, and hopefully learn to enjoy positions other than side-lying, and hopefully open up more and more of the world to her.

[Mira is not wearing pants in either photo above because it is simpler to avoid uncomfortable folds and puckers at her hips where we are trying to avoid bed sores. She gets to wear a pretty shirt, cute socks, and a cozy blanket whenever she's at home. We save pants for going out.]

4 comments:

  1. A hot tub set to the right temperature might be an incredible place for her to begin to move safely - no pressure on her bones or spine and you can support her head and body in whatever position she needs, plus have skin-to-skin contact. Do you know anyone with a hot tub? Even the 3 ring kiddie pool that many moms use for home birth might be ideal once a week. You bathtub looks small, but perhaps you can manage to get in with her the first time and lay her on your legs, her feet in the same direction as your feet and her head by your tummy, in the position that keeps her airway most clear. There is so much more we can do with our special need kiddos if only we had the resources to have all the equipment and help we need. I'd love to see the future of special education take children out of public school classrooms where they're lined up in front of TV, and put in schools designed to offer them stimulation on their level of awareness and comfort. Water pools, swings, TV that shows them more than just cartoons, such as pictures of nature, musical performances, ball pits, water mattresses.... I realize that all kids cannot be moved too much, but when I saw all the kids lined up in front of Curious George on PBS at our public high school, I felt so sad for them.

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  2. It's heartbreaking to see that even the socks are loose on her sticklike legs.

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  3. Is that Gwen's favorite owl shirt Mira's wearing? She'll be thrilled!

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  4. Andrea, I've been following your blog ever since I discovered it from Susanna's blog. I think you are such an amazing mommy and so admire you and your husband. I think your daughter looks awesome and is beginning to fill out ever so slightly. I do see a real difference and believe you all are making a significant difference in her life. God bless you each!

    Julie Edgar

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