Tuesday, June 27, 2017

Her sense of touch

 Mira loves her Vest. (I can't remember if I've written about this yet - it's a device that we use 1-4 times a day that wraps around her, then inflates, and then rapidly pulses air around her chest and back, helping to loosen gunk in her lungs, and imitate the benefits of coughing.) Tonight when Matt put it on her and hadn't even inflated it yet, we saw this sweet little contented smile on her face. She often has this look of mild pleasure during her vestings, and we think she is learning to anticipate what's coming when she feels us put the Vest on her.

You see, we are becoming more and more convinced that touch is Mira's only way of experiencing the world.

When we first met her last September, her eyes, when they were open, were in constant motion, making large circles, and never really resting on anything for more than a moment. Her pupils never dilate; they are always tiny little black points in the center of those golden brown eyes. Since coming home, her gaze has become much more steady. Incredibly much so. But we do not ever get any feedback that suggest she's actually tracking anything, or actually seeing anything with those beautiful eyes. She is scheduled for a vision test later this summer. We'll see what we learn at that time.

When she was in the hospital a month ago for her first pneumonia stay, they performed an ABR (auditory brainstem response) test that had been previously scheduled, and thankfully they were able to do anyway while she was inpatient. The results show that she is profoundly deaf. There was absolutely no response in her brain from any of the vibration stimulations they gave to her ear, not even when they bypassed the middle ear and went directly on the inner ear. Nothing. Nothing at all.

We're still not quite sure what to do with that information. On the one hand, it would explain why she never ever startles, or gives any response whatsoever to any sort of loud, sudden noise that happens around here. And let me tell you, our house is FULL of loud, sudden noises. But on the other hand, there are also times when, even after learning what we did from the ABR, she seems to be aware of us speaking. We're undecided.

But one thing is very possible, and that is that our Mira's only way to have any input from the world outside of her is through touch. I've repeated it many times, but we were told by her Bulgarian doctor that touching her would cause her to have seizures, and that we ought to be very judicious about when and how often we did so.

Oh, baby girl! To have been robbed for so many years of your only way of experiencing your world! To have lived in a constant state of fearful anticipation of the next thing that would be done to you, knowing it would come without any of the preliminary warnings of seeing or hearing someone coming. No wonder she was always so tense when we met her. In order to survive, she had to be constantly braced and ready for whatever would come next, and since the staff had been told that touching her caused her to have seizures, those times would have been as far between as they could, and performed as quickly as possible. (Not that they went out of their way to use touch in a beneficial way with any of the children as far as we know, but to know that they felt medically justified in denying that to Tsvetomira creates a pit in my stomach that can take my breath away.)

Knowing these things about her is tough, but also enables us to be more mindful of the way we use touch - regularly, frequently, intentionally, knowing that her sense of touch is our way to get inside her world. She is an incredible girl to have survived for so long in the utter solitude that was her life, and for her to still be able to learn so rapidly to trust and enjoy the kind of touch that a loving family gives is amazing.

Saturday, June 24, 2017

Reprise

It happened again this morning...



...but this is still the best song for dancing along!



And then Owen and his cat showed up! It's amazing what a party they can get going in that little blue bedroom!


A year ago Bogomila had no idea that there was a family waiting and waiting to get to meet her and make her their own. Now here she is - part of something much bigger than she is all on her own.

Thursday, June 22, 2017

Family

A dear friend of mine was finally able to make it over here (with six of their seven children!) to meet our girls and just to visit. As she and I emailed back and forth a bit after the visit, she put into words something that I've noticed all along, but haven't been able to state as clearly as she did:

"Bogomila isn't just trying to assimilate into one culture (America), but TWO--American and Family."

She hit the nail on the head. It would be hard enough after spending your whole life (sixteen years - Bogomila's nearly an "adult"!) in one culture, to jump into a completely new one cold turkey! New country, new language, new foods. But in most cases, a child would have at least the support of their family as they take on this challenge; for Bogomila, yes, she now has a family to help her with the transition...but that involves as much culture shock as the language and country aspects do, and perhaps even more.

The whole notion of what it means to be a part of a family is something she has never experienced, and is even more foreign to her than living in Minnesota instead of Bulgaria. For starters, the culture of "family" is much more invasive than simply a change of location. We have this crazy desire to know her, to understand her, to love her, and to love her in a way that she has absolutely no frame of reference for understanding. And being part of a family means that you lose part of your autonomy - suddenly your life intersects with and impacts and is impacted by the lives of others in a way that you've never imagined, and even if you've always wanted a family, and always carried around the pain of knowing you were abandoned by your very own mother and father, the reality of living in a family is understandably rather jarring at times!

It's much easier and safer to just stay in your room listening to your own music, and just come out when you have to.

However, more and more we're noticing an open door policy beginning to be instated. Tonight as Matt and I were working on getting little people ready for bed, this is what I saw around the corner...

Wednesday, June 21, 2017

What Bogomila's been up to

The brain is tired tonight, and once again, the things I really want to post aren't going to come out, but in the meantime, here are some videos of Bogomila's progress with her therapy and her goal of someday walking! We still are holding all future predictions loosely, but what our daughter has going for her is some serious determination.

Bogomila and I walk together almost every single day at home. Our usual route is around the house, then she rests in a chair while I run in and attend to other small people (usually Gloria is toddling alongside of us!) Then I'm back out and we get another lap around before heading inside. We do this by having me walk with my forearms under her armpits to give her the balance she needs as well as taking some of her body weight. As she's getting both faster and stronger with this, I asked her therapist to show me how to help her walk with a belt rather than my arms under her - she has to do more of both the balancing and the weight bearing that way, but I've still got a very secure way to keep her safe. This is the result!



This past Tuesday at the center I only got to watch the end of her session, but was delighted with what they had to show me. Look at her standing up using the wall all by herself! Again, Lori's got the belt, but that's a safety precaution. Bogomila's doing the work of standing by herself!



And then she got to push me in her wheelchair...



I'll also mention that I've read your comments to her on past posts about her therapy work, and she sure loves hearing the words of praise! She'll downplay what she's doing when we talk about it at home, or share it with Dad, but I think she's pretty proud about what she is learning to do...although it's a whole lot slower progress than I think she had hoped for! It's been delightful to us, though, to see how her progress so far continues to be visibly noticeable!

And, oh - an anecdote from the other day. When we first got her braces (skobees in Bulgarian), she did NOT like them. They made her feel like a robot (not sure if she meant how they felt or how they moved, or how she thought she looked), and they hurt. She would wear them for a few minutes at each therapy session, under duress, and that was it. Lori would teasingly sing to her about her skobees (Lori can make a song for anything!) and I could hear Bogomila's cries of protest from the other side of the therapy center! We finally got to the point where she agreed to wear them for 20 minutes or so once or twice during the week when she was just sitting in her chair.

And then, almost like a switch, she realized that the brace, especially on the right leg, really makes a difference in her alignment, and she will willingly wear that right brace whenever we go out walking! I realized how fully that switch was in her mind one day last week when we arrived at the therapy center, and I realized, oh! I'd forgotten the skobee bag at home.

"Oh, yay!" was Bogomila's response, followed immediately by, "Oh, no!!"

She's realized that they're a good thing, and she much prefers walking with that right brace on now.

Friday, June 16, 2017

Mira's got her wheels!!

 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!
Here we all are, including camera-smile-Gloria, waiting around while Rob was working on fashioning the tray.
Time for Mira to eat. Thanks for helping, Gloria!
Rinnah and her older sister...
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.
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.

Wednesday, June 14, 2017

not "special" enough

Mira's had quite the tour of the antibiotic world over the last three weeks. After her anaphylactic reaction to one of the two common antibiotics she received in the ER on her first visit, both of those have been put onto her "bad" list as no one wanted to risk a recurrence! Those two are, of course, the two most common and practical ones, and no one was happy to lose them! But they put her on two other ones, and those were the two she was sent home with after her week-long stay in the PICU and general neuro-sciences wards.

It was about 24 hours after her last doses of those two that she was heading back to the ER where they started her on a fifth antibiotic, via IV. That drug happens to be fairly corrosive to veins, so midway through our stay, we lost the IV, and after two good, but failed attempts at putting in a new one in a more robust vein (no hands or feet for this drug!), we were given the option of sedating her to put in a PICC line or trying an antibiotic that could be administered through her g-tube.

Since not even the doctors there really wanted to sedate her in her state when there was another option (besides the fact that she had just finished one of her bolus feeds, so it would require a move to the PICU and an eight hour wait), we went with the g-tube med.

The problem is that the culture on her lung serum came back with a strain of pseudomonas that is only 50-60% susceptible to the antibiotic we were using.

That's not quite enough for anyone to be satisfied, so they added another antibiotic that is administered via nebulizer machine. They gave her one dose Wednesday morning, with no negative response (there can be a severe heart reaction in some patients), so discharged her that afternoon with prescriptions for both antibiotics to be taken at home.

Problem is that the neb drug is only covered by our insurance when it is provided by a "specialty" pharmacy, and apparently the pharmacy at Gillette Children's Specialty Healthcare is just not quite special enough. Another hospital in the Cities is, though, so the prescription was called over there to be filled and sent to us by Thursday morning. That meant she would miss a dose, but that was going to be okay since she has some coverage from the g-tube med. Except, when we called Thursday to follow up, they were dealing with needing pre-authorization, which we were told could take 10-14 days. How do you reasonably explain to the insurance company that it's got to be a *whole* lot more cost effective to approve an antibiotic that can be administered at home than to have her end up back in the ER for another hospital stay?

We got a STAT put on the request, and were then told on Friday it would be only 72 hours (business hours) before we'd get the approval. That's much better, but doesn't jive well with the fact that the g-tube med we were given ran out Saturday night, meaning we'd have at least two full days, maybe three, with no antibiotic, and remembering that the first time it took only 24 hours before she was back in the ER, we weren't very satisfied with that option.

This is where I'm reminded that as a parent, it's MY job to keep all of this straight in my head, and to, as they say, advocate for my child. I spoke about this over the phone with the doctor who was prescribing the medication, and in response to my question, she suggested we get a few more days worth of the 50-60% effective drug in order to keep things suppressed enough to get the other one started.

So that's what we did, and mid way through the day Tuesday, the nebulizer med arrived in an incredible box, with two layers of packing surrounding the two ice packs sandwiching the little bag of medication with a retail value of over $2300. Yikes!! But still, that's a whole lot less expensive than going back to the hospital so they can give her the same medication there!

Here's our girl, taking her first dose of her very expensive medication which should, hopefully, clear out whatever junk is still growing in those lungs and give us the potential for a nice, healthy, summer season!

Tuesday, June 13, 2017

The face of neglect

Somebody was very sad leaving the therapy center this morning. You see, he had to leave behind a truly fabulous toy that his occupational therapist let him play with toward the end of his session.

It was a bowl.

A plastic bowl.

And the fact that having to leave behind a plastic bowl can reduce my almost-thirteen-year-old son to fifteen minutes of sobbing with tears streaming down his face is a very sad thing.

All those years of nothing are so deeply ingrained in this boy's brain that to have something and then have to give it up is still tragic for him.

At times like this I recognize how very inadequate I am to the task of even imagining the severity of the impact the abuse of extreme neglect he (and so many others) survived (or didn't survive, in the case of many, and that many are still surviving at this moment) can have on a human being.