Have I shared about Bobbi's habit of giving superhero names to the important people in her life? Daddy is Superman; Grandpa is Batman. And she's got a great sense of humor in it. Her doctor and his nurse both have movie names (Jackie Chan and Liam Neeson). The best part about that? Her doctor is, yes, a short Asian man...but with mild cerebral palsy.
Well, tonight as I helped her with her bath (because we have not progressed any further whatsoever on the bigger bathroom), she was showing me a small bruise on her leg. She knows the English word for "bruise" and then paused, and told me her bruise had a name: Bruce Willis.
I love it that she is making jokes in English!
Tuesday, August 29, 2017
Saturday, August 19, 2017
On Tsvetomira
So here's Mira.
One of my favorite things when we're all going somewhere together, is when I look over and see Daddy pulling the spray bottle of water and a comb and barrette out of the "Mira essentials" bag and make his little girl all pretty when putting her into her chair after laying down in the van for the drive.
Mira continues to be adored by her younger sisters, and it's been sweet to see Krassimir growing in his awareness of her, too. If he sees one of her things (pillow or drool cloth) laying around on the floor, he brings it over and puts it on top of her. Yes, it's possible that it's just the thrill of being very near to her cushion, which is a tremendous temptation for him, but something that is off-limits (we can't have him pulling it out from under her!) but we prefer to think that he's finding his own way of being her big brother.
We continue to see occasional episodes of dystonia, but much less significant than we did at the beginning, and still do not think we have witnessed any actual seizure activity. Crazy. ;)
Mira has also continued to pile on the weight, and after a mild cut-back in her daily intake in June, our last meeting with her complex care doctor and dietician resulted in another more significant decrease in what we're feeding her every day. Matt and I are pretty happy with the current status quo. She obviously needs more weight than she had when she first came home!
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| In Sofia on our pick up trip |
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| During her first hospital stay upon arriving in the US |
Managing her bowels continues to be our biggest challenge. Her neurologic deficits make the normal "movements" a very difficult thing, often triggering some mild disautonomic storms. We are dancing the fine line between too much miralax and senna oil and having stool that runs all over and having not quite enough and seeing her in great distress to move things through. It is a very delicate balance, and we still don't have it fully figured out yet.
Maintaining a stable body temperature is also a challenge for Mira. She regularly swings throughout the day from a high around 99 down to a low around 95, and sometimes the range is greater. We've just started monitoring this more regularly, and it's amazing to watch it swing.
Last night she was agitated trying to move some things into her diaper, so I picked her up and held her on my lap during the second half of our Bible study. She loves that, and it calms her right down. Leah still regularly asks to hold her for a while after supper, and gently combs and strokes her hair while she snuggles her close. Even though she still spends much of the day laying on her cushion, her days are regularly punctuated with these kinds of human interactions that she responds to so well. We're so glad she's not alone anymore.
Tuesday, August 8, 2017
Out of her comfort zone
Bobbi's life has been full of challenges over the last six months, and one of those is generally that she's getting pushed out of her comfort zone in all sorts of ways!
Six of our nine children are part of our local 4-H club. We have come to enjoy 4-H because it is fairly easy to commit to (one meeting per month), provides fun opportunities, and is a club that is designed to incorporate a wide range of ages (kindergarten through first year of college) and interests and abilities. It's perfect for our larger family with a range of unique situations.
The culmination of the 4-H year is the County Fair, and the showing of one's "project." It's taken me a few years to really figure this out, but a "project" is really anything in the world that you as a club member can come up with. You can make something, bake something, train something, research something, perform something - pretty much anything you can think of can be made into a 4-H project. At the judging day, each club member meets individually with a judge in their particular project area (engineering design, clothing, quilting, photography, performing arts, fine arts, crafts, shop, indoor gardening, you name it!) and together they discuss the project, the goals, what was learned, what could be done better, and then each project is given a ribbon according to the Danish system of judging where the projects are not judged against each other, but are judged against a standard, and then given a red (average), white (below average) or blue (above average) ribbon as appropriate.
Because, in my experience, most 4-Hers tend to be more motivated, either internally or by their parents, the majority of the projects end up being above average, but there is still an element of the unknown in the process.
Especially for a certain sixteen year old who's never in her life been in a situation like this!!!
We were very grateful to our friend Avrora, one of the Bulgarian women we've met through the Bulgarian school, for agreeing to come along and be Bogomila's translator for the afternoon! I really think Bobbi could have done just fine on her own with the way her English skills are developing, but having a Bulgarian speaker along greatly helped to make her less nervous.
So, here she is! Stretching herself in a way that she had repeatedly over the week leading up to it, told me she could not do. But she did!!
Bogomila enjoys baking, and baked a beautiful loaf of Carrot Banana Walnut Bread. She is getting quite adept, even with the limitations of her cerebral palsy, and can now measure almost all of the ingredients by herself, and does all of the mixing herself, too. (Mom still reads the recipe!)
Her second project was a collage she had made from photos of her friends from Bulgaria. She again was very hesitant to share, but was delighted with the blue ribbon she was awarded.
Here she is during the fair a few days later, checking out her project where it was hanging on display.
She did it!! One more "can't" turned into a "can." Little steps, but real steps, and now I'm looking forward to seeing what she decides to do for next year now that she has some idea what is possible!
This whole experience was very uncomfortable for her, but we as her parents know that some discomfort now holds great promise for possibilities in her future, so because we love her, we push her into situations that are anything but comfortable! And she did it!
Six of our nine children are part of our local 4-H club. We have come to enjoy 4-H because it is fairly easy to commit to (one meeting per month), provides fun opportunities, and is a club that is designed to incorporate a wide range of ages (kindergarten through first year of college) and interests and abilities. It's perfect for our larger family with a range of unique situations.
The culmination of the 4-H year is the County Fair, and the showing of one's "project." It's taken me a few years to really figure this out, but a "project" is really anything in the world that you as a club member can come up with. You can make something, bake something, train something, research something, perform something - pretty much anything you can think of can be made into a 4-H project. At the judging day, each club member meets individually with a judge in their particular project area (engineering design, clothing, quilting, photography, performing arts, fine arts, crafts, shop, indoor gardening, you name it!) and together they discuss the project, the goals, what was learned, what could be done better, and then each project is given a ribbon according to the Danish system of judging where the projects are not judged against each other, but are judged against a standard, and then given a red (average), white (below average) or blue (above average) ribbon as appropriate.
Because, in my experience, most 4-Hers tend to be more motivated, either internally or by their parents, the majority of the projects end up being above average, but there is still an element of the unknown in the process.
Especially for a certain sixteen year old who's never in her life been in a situation like this!!!
We were very grateful to our friend Avrora, one of the Bulgarian women we've met through the Bulgarian school, for agreeing to come along and be Bogomila's translator for the afternoon! I really think Bobbi could have done just fine on her own with the way her English skills are developing, but having a Bulgarian speaker along greatly helped to make her less nervous.
So, here she is! Stretching herself in a way that she had repeatedly over the week leading up to it, told me she could not do. But she did!!
Bogomila enjoys baking, and baked a beautiful loaf of Carrot Banana Walnut Bread. She is getting quite adept, even with the limitations of her cerebral palsy, and can now measure almost all of the ingredients by herself, and does all of the mixing herself, too. (Mom still reads the recipe!)
Her second project was a collage she had made from photos of her friends from Bulgaria. She again was very hesitant to share, but was delighted with the blue ribbon she was awarded.
Here she is during the fair a few days later, checking out her project where it was hanging on display.
She did it!! One more "can't" turned into a "can." Little steps, but real steps, and now I'm looking forward to seeing what she decides to do for next year now that she has some idea what is possible!
This whole experience was very uncomfortable for her, but we as her parents know that some discomfort now holds great promise for possibilities in her future, so because we love her, we push her into situations that are anything but comfortable! And she did it!
Tuesday, August 1, 2017
Art Salami
This is an important [albeit slightly tongue-in-cheek!] post about the significant topic of bonding.
We don't really have anything to compare to, but have found that our process of building a strong bond with Bogomila has been progressing at a pace we are comfortable with. It's funny how there are so many levels to what it takes to make that sort of deep connection of trust and devotion to another person, but one of those is being met in the development of a new tradition between Bogomila and her Daddy.
We call it, Art Salami.
There's even a song to go with it some days, to the tune of one of the Indian songs Bogomila likes. (Vayts - you might know which one we're talking about!)
So, without further ado, enjoy the show!
Exhibit A: a flower
Exhibit B: a heart!
Exhibit C: "V" for victory.
Exhibit D: "B" for Bogomila!
Exhibit E: Intended as an umbrella (it was a rainy morning), but "palm tree" is also an appropriate interpretation.
Exhibit F: so, inspired by the tree guess from the day before, here is a Christmas tree, in honor of the Christmas music and Christmas movies Bobbi's been listening to.
Exhibit G: Owen took a turn. It's "Bo" (one of her nicknames) in salami and ketchup.
Exhibit H: A three-dimensional flower. Bobbi doesn't like flowers (thus the face), but the salami/ketchup medium is so conducive to flowers...
Exhibit I: This one's better from the side, but that photo apparently doesn't exist. But this one is a pyramid of sorts.
Exhibit J: Another three-dimensional flower
Exhibit K: A patriotic gesture on the 4th of July. How better to be introduced to American culture than through ketchup and salami??
Exhibit L: Daddy's architectural bent shows through in this rendition of the Leaning Tower of Pisa.
Exhibit M: In my opinion, the pinnacle of Matt's artistic efforts. It's hard to surpass...the Eiffel Tower.
Dad's creative juices needed a recharge after that one, so Owen again picked up the slack. (I made one attempt early on, and was rejected forever from the elite group of salami artists.)
Exhibit N: Um. I'm not quite sure what this was supposed to be. But it put a smile on Bobbi's face!
A few days off while we were in Wisconsin, and then Owen and Bobbi stayed a few days longer with my parents meant that Matt was back in full force.
Exhibit O: Believe it or not, this is BATMAN! In salami. Batman is Bobbi's special name for Grandpa.
Exhibit P: Owen's turn again with a winner's podium. It's hard to see from this angle, but with a little help from google, Bobbi got it.
Exhibit Q: Nothing other than Bobbi's iPod!!
Exhibit R: Branching out again with the addition of toothpicks. But this floral arrangement turned out to be very difficult to eat without making a mess, so the toothpicks have not made another appearance.
Exhibit S: Some days the inspiration is hard to come by. It's a chevron.
But even when the inspiration is less than thrilling, the experience itself is definitely memorable!!
We don't really have anything to compare to, but have found that our process of building a strong bond with Bogomila has been progressing at a pace we are comfortable with. It's funny how there are so many levels to what it takes to make that sort of deep connection of trust and devotion to another person, but one of those is being met in the development of a new tradition between Bogomila and her Daddy.
We call it, Art Salami.
There's even a song to go with it some days, to the tune of one of the Indian songs Bogomila likes. (Vayts - you might know which one we're talking about!)
So, without further ado, enjoy the show!
Exhibit A: a flower
Exhibit B: a heart!
Exhibit C: "V" for victory.
Exhibit D: "B" for Bogomila!
Exhibit E: Intended as an umbrella (it was a rainy morning), but "palm tree" is also an appropriate interpretation.
Exhibit F: so, inspired by the tree guess from the day before, here is a Christmas tree, in honor of the Christmas music and Christmas movies Bobbi's been listening to.
Exhibit G: Owen took a turn. It's "Bo" (one of her nicknames) in salami and ketchup.
Exhibit H: A three-dimensional flower. Bobbi doesn't like flowers (thus the face), but the salami/ketchup medium is so conducive to flowers...
Exhibit I: This one's better from the side, but that photo apparently doesn't exist. But this one is a pyramid of sorts.
Exhibit J: Another three-dimensional flower
Exhibit K: A patriotic gesture on the 4th of July. How better to be introduced to American culture than through ketchup and salami??
Exhibit L: Daddy's architectural bent shows through in this rendition of the Leaning Tower of Pisa.
Exhibit M: In my opinion, the pinnacle of Matt's artistic efforts. It's hard to surpass...the Eiffel Tower.
Dad's creative juices needed a recharge after that one, so Owen again picked up the slack. (I made one attempt early on, and was rejected forever from the elite group of salami artists.)
Exhibit N: Um. I'm not quite sure what this was supposed to be. But it put a smile on Bobbi's face!
A few days off while we were in Wisconsin, and then Owen and Bobbi stayed a few days longer with my parents meant that Matt was back in full force.
Exhibit O: Believe it or not, this is BATMAN! In salami. Batman is Bobbi's special name for Grandpa.
Exhibit P: Owen's turn again with a winner's podium. It's hard to see from this angle, but with a little help from google, Bobbi got it.
Exhibit Q: Nothing other than Bobbi's iPod!!
Exhibit R: Branching out again with the addition of toothpicks. But this floral arrangement turned out to be very difficult to eat without making a mess, so the toothpicks have not made another appearance.
Exhibit S: Some days the inspiration is hard to come by. It's a chevron.
But even when the inspiration is less than thrilling, the experience itself is definitely memorable!!
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