Goals

One of our big goals for Krassimir and Reuben in spending their days in the public school is that they will have exposure to as many of the people who will be their peers in the community when they are adults (and, with Reuben, there's always the ever-present if he lives to be an adult caveat echoing in my head).

Today we made our Wednesday library run two days late, and just as we were packing up to leave, a girl came over to Krassi and greeted him. I spoke briefly with her - he was in her mainstream class back when he was at the elementary school, and her words to me were, "We were heartbroken when he moved to the middle school!!"

Yes!!!

It was such a joy to me, too, to see Krassi, prompted by my, "Krassi, do you want to say Hi?" raise his hand in greeting to her, and more importantly, his eyes. I am so proud of that boy! Making eye contact, or even looking at inanimate objects directly, is still something that does not come naturally to him, but we keep working at it, and he keeps getting better.

Here's Krassi showing off his great eye contact at the circus!

 He's a cool kid. ;) Then, of course, as we left the library, he kind of blew that persona as he fell to pieces sobbing because I told him that he had to leave the hard plastic bunny toy at the library and he could play with it again next week. Those times are still kind of a kick in the gut as it flashes me back to his past - so many years of deprivation of any sort of stimulation that having to give up a toy causes a sort of panic in him, even five years later. How I ache for that hurting little boy.

And yet...it's taken time, but look how far he's come.

The circus goes to the Circus [now with a few more photos]

And a good time was had by all (Mom, Dad, ten kids, and Rose). More or less. :D This was my first time, but Bobbi, believe it or not, had been to a circus in Bulgaria in her childhood, so she was not a rookie. ;) Still, she fully enjoyed the outing. There are not a lot of things that we can do all together as a family - this one worked great. Even Mira, who's had a rougher transition to being back home than she usually does after a hospital stay, made it through the whole morning calmly and peacefully.

We're really all there - you can't see Evania (between Rinnah and Rose), and Tsvetomira is visible only by her hair next to Matt at the far end, but there we all are!! Bobbi and I are "twins."

WOW! Elephants.

We didn't pay for any of the extras, like face paint, but "Mom-face-paint" (aka lipstick) is free. ;)

Bobbi got one, too.

Some pretty crazy stuff! Having never been to the circus before, it was funny to me how surprised I was to see "real" circus stuff.

Here's Eben's way to enjoy the circus.

Tsvetomira's back home

A nice, short, one-week stay. Little bit of a rough afternoon, just uncomfortable, but we vented her g-tube, and she seems more comfortable. She's still on some oxygen, and will be at a higher level for her respiratory cares for a while, but it's good to have her little corner occupied again!

Precious little girl - on Friday (I think), Matt came home with a story - she'd had a new nurse who didn't know her the previous night (which is kind of new because she's spent so much time there that most of the nurses know her!) and she was just having a hard time sleeping - really unsettled. One of the nurses that knows Mira was on the same shift with a different child, but popped her head in, and knew the easy answer: Mira's afraid to sleep in the dark, and wanted the light on. Sure enough, when her nurse turned on the lights, she settled right down and went to sleep.

It's hard to put into words how much that means to me to know that there is a whole crew of nurses who knows our daughter well enough to be able to share that kind of information that isn't in her medical file. Even when we're not there with her, there are people who know her and care about her, and are working to find out what she means when she's trying to communicate, even when all she's got is whimpering.

I think she's getting faster.

It's bedtime for littles, thus all of the footie pajamas, Bobbi included.

Tomorrow she gets to see her physical therapist for the first time in almost two weeks (b/c Lori was on vacation), and I'm curious to see if she notices any measureable increase because of what we've been able to do at home!

You know you're a "frequent flyer" when...

Matt appreciated the Welcome Back. And that's just not her normal neurosciences wing where she usually spends her time, but in the PICU (pediatric intensive care unit).

Ah, Mira.

Her little corner between the dining room table and the computer desk is so empty without her here!

She's having a rough time, but nothing outside of her normal hospital roughness at the moment.

The up side of a "Code Red"

Mira, who always tanks fast when she goes, had a rough night last night, and today we decided that we'd have Matt take her down to the ER and likely to have her admitted at Gillette. We have the routine down to quite a science, with a bag always packed with supplies that fit her to save time on their end, and we give a call to Gillette so they know we're coming and they will sometimes give a heads up to the Emergency Department as well, as they don't always quite know what to do with Mira!

Matt's email updates to me included the exciting news that they, "Got a code red this time!"

What for? Respiratory distress - even on 3 liters of oxygen, she was only satting at 90. So, why the upbeat delivery of that message? Well, your wait time goes way down when you get a code red, AND they bring the mobile x-ray machine right to you instead of having to go down to the x-ray department.

Ahhh. The perks.

They've started an antibiotic, and Matt and the ER doc were chatting about Bulgaria, since he spent a week there about 15 years ago. That's when you know the ER routine is truly "routine"!

Mira's been SO good for nearly three months. Not just limping along, but really quite robust, with all systems working as well as they do for her, so although it's never great for her to be in the hospital, I'm looking at this stay with a sort of triumphant feeling - she was rock solid for nearly three months! We can take a little hospital stay.

Daddy/Daughter dance

Believe it or not, Bobbi expressed interest in going to her high school's Daddy/Daughter dance! So, at the last minute, they purchased tickets, and tonight I have a quiet house as Leah and Rinnah are at friends' and Bobbi and Matt are out...eating tasty food at the dance. 😋 Neither one of them are big dancers, but it was still a fun chance for them to go out together and do something different, and I'm mostly just excited that she was interested in going!

A point of comparison

I realized that although I had uploaded this video almost a year ago, I had never posted it. As a reference point, this is what Bobbi's walking looked like last spring! Same walker, same girl, but different legs.

For my dad

Bobbi's talking via the internet with my dad right now, and I said I'd get this video up. This was last weekend - we got to take the walker that she's using at the therapy center home with us since her therapist is gone this week, and WOW was I amazed at how far she's able to walk!!



I get a kick out of Krassi following behind her...and Eben's foot on the side!

A Poem

We were surprised this past weekend by an email from one of our local Bulgarian friends. (I'm still just blown away by the way we've been able to become part of the local Bulgarians-living-in-Minnesota community - such a great way for Bobbi to keep her language, and for all of us to keep our feet wet in Bulgarian culture.) She shared that her daughter had entered a contest for poems about immigration...and won! Even better is the intersection with our life - her daughter dedicated the poem to Bobbi, citing her as the inspiration for the story. As a child of immigrants, knowing many other Bulgarian immigrants herself, she could have pulled inspiration from any variety of sources, but there was something about Bobbi's story that captured something for her, and apparently, her thoughtfulness in telling the story captured the interest of the judges as well!

Enjoy:

“Little Bogomila: Based off a true story”

It happened so fast,

But I remember

That special letter,

The letter addressed for me

Whispering:

I’m going to America.

And yet, here I am.

Goodbye Airplane,

Goodbye Bulgaria,

Goodbye Orphanage,

Goodbye Life,

I miss you, but I must move on.

Now that I see it,

America,

I’m breathless.

Finally saying,

‘Goodbye’ to that

Small orphanage.

Too many feelings.

I’m excited, but

I miss you, Bulgaria.

,,Липсваш ми’’ I whisper.

But now...

I think I’ll just say goodbye.

The airport: overflowing.

Immigrants, everywhere.

One of them though;

Is going to be me.

And I’m going to live

Like a real American.

They’re coming toward me.

I see the family.

But... something is wrong.

It’s missing something.

Maybe they’re missing

A girl like me.

Later the family comes

Surrounded by people:

Very formal.

When they sign a paper

The little child,

Says “ welcome home.”

Thankful,

Thankful that somebody

This kind is here.

Actually willing

To claim me.

I wonder why….

I was happy, but now?

Questions surround me,

“What will they think?”

“Am I an outcast?”

Its too many questions.

How do I answer?

Weeks later,

They drive me somewhere.

Somewhere unfamiliar,

Overfilled with kids

Pushing through and I wonder,

“Is this school?”

Everything: so different.

They talk strange,

A much different language.

And nobody understands me.

Yet I’m supposed to be

In 5th grade.

“Some much stress” I think,

“The teacher is always talking

But I can’t hear...

Or understand

She’s always

Facing me… Why?”

Then when everyone,

Hurriedly piles out

I realize why they’re always staring

It’s the wheelchair on my feet.

I’m angry, it’s just helping me.

How does this matter to them?

And then I see that

We all came from somewhere,

Someplace else.

And suddenly, I can feel a shot of joy

Like I’m not the only one.

But maybe I’m right.

And this may not be

My true home

But I know,

I still belong

And that’s really

All that matters to me.

I feel so proud,

I’ve gone so far,

I’ve inspired many people,

I’ve learned about many other cultures,

I’m just thankful,

That I could see it all happen.

My friends,

My family,

My education,

My life,

Thank you, America

For helping them.

And it warms my heart

To hear others

Who could also share;

Share their struggles

And remind themselves

Just how far they had went.

Other countries,

Other people

Other stories,

Other traditions,

They’re in another world

But here, they can be together

I see it

But differently.

It’s unique.

It’s America.

Това е живота ми.

Това е иммиграция.

Author’s Note: “This is my friend’s story and she is from the same culture as me. I think that this explains why I’m glad for immigration. This is based off of her experience. Special acknowledgments to Bogomila [G]Lewwe.”

Standing

So today you're going to just get a "boring" video of someone standing up.

Enjoy!!



Keep in mind that prior to surgery, she couldn't do this at all without hands-on assistance. Earlier this week she stood completely unassisted (like this), for over 30 seconds; this time was 58 seconds, and I think if I hadn't gotten her laughing so hard at the end, she would have gone longer!! Lori's holding the belt as a precaution, but she's not giving Bobbi *any* support - that's all just Bobbi.