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.

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.

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...

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.

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.

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!

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.

More "room"

The title for this blog was originally chosen to not only share about the "more" aspect of our family growing through adoption, but also, with Matt and I both educated in and working in the architectural field, to share about the "room" side of things as we designed and built a large addition to our home during the time we were going through Krassimir's adoption process. (You can read a little bit more about the choosing of the blog title and that original building project in this post from early on in the blog's history.)

A few years before either of these changes were even on the real horizon, God had been increasingly impressing on us the importance of living out our trust in him through living to be debt free and trusting that he would provide the means for us to have what we needed when we needed it. In that framework, if we did not have the money for something, God did not think we needed to have it. Taking out a loan was not going to be an option, and we were taking active steps to pay off our home mortgage quickly in order to be a more freely flowing channel through whom God could direct resources as he saw fit. If we have no financial obligations on us besides the provision of our day to day needs, we can be free to give as generously as he supplies!

That was all before either the addition or the adoption were on our radar. When *both* of those suddenly jumped onto our plate at once, it was a little daunting. How in the WORLD were we going to come up with nearly 5 times our average yearly income (which, for what it's worth, is not that sizable! So it's not as daunting of a task as it might seem at face value! But still...) over the course of a year?


If you were reading the blog at that time, you'll remember that there were countless ways that we saw God supply what we needed when we needed it. Sometimes that was through unexpected money, sometimes through good sales, or discounts, or donations of the time of others, sometimes it was through delays that gave us time to save up more of our regular income. Once it was through a major surgery being canceled completely a few short weeks before it happened, freeing Matt up to be fully capable with his body for putting in the sweat equity on the addition! Regardless, we trusted him for both the provision and the timing, and we were not disappointed.

We are, hopefully soon, going to be embarking on yet another house project. (Yes, I know. Seriously. When are those two going to just be done with it?!) Well, we've gone around and around with this one, even contemplating attempting it last summer, but for a variety of reasons, it hasn't happened yet.

We would like to have a bathroom that is handicap accessible.

As much as I've appreciated the bonding that's come of me needing to help Bogomila with her bath every night (lifting her into the tub, helping her scrub her back and wash her hair, lifting her out of the tub, and helping her wrangle into her clothes in the tiny little 1939 bathroom that we have - it could be worse! At least we have indoor plumbing!!), it will ALSO be good when she can do those things independently. We've also, just for the little boys looking forward, been thinking about a larger private space for diaper changes and dressing (there will come a time when the dining room floor is just not the appropriate place for those activities), and for grooming for Krassimir as he gets older. Right now all of his grooming happens in his eating chair. Shaving someday isn't going to work as well there. ;)

We would love to have a wheelchair ramp into the house!

It works right now to carry our three physically impaired children in and out of the house every time they need to get in or out, but it's a lot of back and forth...and especially once Bogomila gets her new wheelchair, we'd like her to have more easy access and freedom, and we'd love to see Krassimir using his more as he grows up as well. Right now it's just a whole lot easier to leave it outside than to take him out, carry him in, set him down, go back out, carry the chair in, pick him up and put him back into it...it just doesn't happen often. With Mira, too, set to get *her* chair this week, we would love the accessibility of a ramp to take her out with us when we're spending time in the yard.

We've seen some interesting progressions just lately that have catapulted this from "good luck" to "very possible" that I'm hoping to share, but not tonight. What I DID want to do tonight was get this out on the table so everyone and not just us here in this house, can enjoy the unfolding story of how we will be supplied with what we need...when we need it. (Which is not always when we think we'll need it. I remember telling Matt we needed to have this figured out and in place before the girls came home. Well, turns out we didn't! Because here we are, here they are, and there is no new bathroom! One hundred and thirty-three times and counting I have lifted 100+ pound Bogomila into and out of the tub. It's working now, but it's not a good long-term solution!)

Not the best images, because I just clipped them from AutoCAD, but this is a shot of the existing bathroom. It is small. The toilet is so close to the bathtub that we can get by without grab bars, but there's really not enough space in there for Bogomila to do much safely, and definitely not enough to get Krassimir in there!

The proposed bathroom addition/remodel involves turning the existing bathroom into a sink hallway. (The scale is different, sorry! But you can see the funny pink "T" shape with the sink in it where the bathtub used to be.) New square footage will have a bathroom with a tub, a flush entry shower, a toilet (with grab bars), a sink, and room for a fold-down changing table (the blue rectangle) sometime in the future. There is also a little entry from the outside that will go across a covered deck into the garage where we will take over one of our vehicle stalls for a ramp. (This version shows an electric lift in the bright blue, but our current plan is to just do a ramp.)

On the outside, Matt's more modern aesthetic comes through. 😏 The bathroom addition is on the back of the house, so won't change the view from the front, but structurally, he doesn't want to have to mess with the 2x4 roof framing that we currently have, so is proposing a cubic shape for the addition.

The intention is that from the back, it will tie in with the cubic shape that is Matt's office on the 2013 addition to our house. Below is the whole house as viewed from the back. On the far left is the existing garage. In the center is the original 1939 house, with the proposed bathroom, and on the right is the 2013 addition, with the little cedar cube being Matt's office. It's not yet a cedar cube, for cost and time reasons, but in our minds, that's what's there! It's just everyone else who looks at it and sees a white cube. The house looks a little busy from the back, but it should serve the needs of our family for a good long time.

So now begins the work of watching how and when it will happen.

Fun with Krassimir

So much of what I've been sharing lately has been about our new girls, but I caught these photos of Krassi last week, and wanted to share them.

I've been reflecting quite a bit over the last few weeks about my relationship with Krassimir as I've been asked to write something about some of the struggles that accompany adoption. One thing that really stood out to me is the difficulty we have had bonding with Krassimir. What happens so naturally with our birth children, and what we're already seeing with Bogomila and Tsvetomira really drove home to me the continuous effort it has been with Krassi, with really very few returns.

RAD* hasn't figured greatly into the topics that I've written about on this blog, but definitely have been an issue for Krassimir.

All of that is a background for the beautiful photos I'm going to share here. I spent nearly an hour on the couch the day physically restraining Reuben during a bad post-ictal** response where he was screaming almost continuously, and trying desperately to kick anything he could find, and to smack himself in the face, or me if I tried to keep him from hitting himself.

Krassimir sweetly crawled over to where I was, and was just taking a moment to be near me. And, oh, those big brown eyes!! And that smile...for me! What a rare, precious gift.

*Reactive Attachment Disorder "is a condition found in children who may have received grossly negligent care and do not form a healthy emotional attachment with their primary caregivers -- usually their mothers -- before age 5." It impacts how all future relationships are formed.

** "After a seizure"

We are home, reprise

After yesterday when there was no real talk about when we'd really be going home (oh, I have good stuff about yesterday to update, but not tonight!), this morning began with a nurse saying we might be discharged before the day was over, and then the neurologist, and then pediatrics and pulmonology all signed off and we were free!!

We opted for a later discharge because Matt had the van at home, and we can't get Mira's chair into the Jetta, so we waited until after Gloria was up from her nap, and had almost the whole crew (minus Bogomila and Owen) come to the hospital to pick me and Mira up!

Here we are, waiting at the West Entrance for the valet to bring Big Blue around for us. Big Blue is too big to park in the ramp, so our only option is valet parking (which thankfully for Gillette patients doesn't cost any more than regular ramp parking), and they park it next to the ramp where there is room for four delivery-type vehicles.

The three valet guys are our friends. ;)

Truth

There is nothing quite so wonderful as finally climbing into bed (yes, alone, because Matt is with Mira tonight) after bathing your almost-eight year old who had vomited all over himself and his bed right before having a large seizure, making his bed while he has three more seizures, administering his rescue meds, starting a load of laundry, and taking down the trash and recycling (because Matt is with Mira), and finding this as the place where your bookmark falls in your before-bed reading for the night:

So we do not lose heart. Though our outer self is wasting away, our inner self is being renewed day by day. For this light, momentary affliction is preparing for us an eternal weight of glory beyond all comparison,as we look not to the things that are seen, but to the things that are unseen. For the things that are seen are transient, but the things that are not seen are eternal.

Just another day at Gillette

Mira is doing beautifully, but there is no rush to send her home, largely because she was home less than a week after her last discharge before ending up hospitalized again. She's fully on room air again, even when laying on her non-preferred side. She lost her IV yesterday afternoon, and they were unsuccessful in getting a new one in in a vein that was sturdy enough to handle the corrosive antibiotic they had been giving her. Our options were to sedate her to put in a PICC line or to cautiously switch to an antibiotic that can be given via her g-tube. There wasn't anyone who really wanted to go through what it would entail to sedate her, so we went with the less invasive route and so far have been okay.

Last night her temp dropped again, so warm blankets were in order, but she responded very well, and steadily came back up to a good temp over the next few hours.

The respiratory care nurse took this photo for me last night as we had Mira all snuggled up trying to get her warmed up again. It's funny, as I look at the picture this morning, my mind snapped back to a year ago when one of my concerns about adopting Mira is that I would not like the way she smelled. I know that sounds like a really stupid thing, but it was something that would periodically run through my mind. Oh, what a non-issue that has been! Yes, particularly before her dental surgery, she DID have a rather unpleasant odor, but as you can see from the photo above, it's just not something that we even think about in our daily life. What an honor it is to get to be the one who gets to be close to this precious girl!

We got good news, too, related to her discharge, which is not yet on the table as a real topic. Mira's been scheduled for tomorrow to have her first of two eight-hour-long appointments with the seating specialist to custom form her seat insert for her new wheelchair. Even though that's a Gillette appointment, it's at a different location than the hospital, and we were disappointed to have to cancel the appointment if she was not discharged today. We're obviously excited for her to keep moving toward having her new chair, partly because of how beneficial it will be for her lung health to be able to spend more time vertical! And healthier lungs means, hopefully, fewer hospitalizations! This morning our nurse called over to the man who will be doing the chair fitting, and Ta DA!! he can do the appointment here at the hospital location! So we will get the best of both worlds: Mira can stay inpatient for one more day without having to miss her appointment. And because we knew about tomorrow's eight hour appointment in advance, I already have some help with the kids lined up!

Our home school year is fizzling out in a puff of smoke rather than ending on a strong finish. We already knew that this second half of the year since the girls came home was going to be quite scattered, and it fully lived up to those expectations, but right before Mira's stay two weeks ago, we were *just* starting to get back into a decent routine and starting to find and tie up some of the loose ends that had fallen to the wayside, and now I don't even know what we're going to count as our official last day of school, which is, by the way, a very important event because we celebrate with a trip to a local donut shop, and that's a pretty big deal!!!

Every day like this that doesn't go according to [my] plan is a reminder to me that even in these times of waiting there is still work for me to do. My job is not to just hold tight and wait until things are back to "normal" and to then get on with life but to recognize that this is what God has designed for right now, and so right here in the midst of abnormal is where I am expected to live in full obedience to him! This day, right here, is where I need to be right now.

Still here

Matt and I made The Switch after church today. Instead of going home after church was over, I drove everyone downtown to the hospital so the girls could say hi to Mira, and so Matt and I could touch in on what's been going on this morning with her. I am now here, and he's at home with the other kids.

Last night we decided to both sleep at home, figuring the nurses all know Mira pretty well after her last stay, and knowing that we both desperately needed the sleep (we've both been fighting strep, and Matt something else as well). Matt's mom was out with her other son for the evening, so we didn't need to stay up to help her with her bedtime medications, so we were free to be in bed by 9:00pm!!! Ten hours in bed, with only three, short, not-requiring-medical-intervention-on-our-part interruptions doesn't solve the fatigue we've been dealing with over the last few weeks, but it sure helps!

Mira is not particularly sick, but she is also not well.

Yesterday, after running a fever in the early morning hours, which was one of our indicators to bring her to the ER, by afternoon her temperature was dropping down as low as 93.7. Even for someone whose body temp runs low, that is low. It's also quite something for your body to have a seven degree swing in temperature within 12 hours! The photo above shows her wrapped up in heated blankets to try to get her back within a more normal range.

I don't fully understand all of the information I'm getting from the doctors through Matt, but it sounds like there are still many questions about our little girl. The neurologist, pulmonologist, and someone from infectious diseases are all addressing different parts of her care during this stay. She's still on a tiny bit of oxygen to maintain good saturation levels, but for the time I've been here is resting peacefully. It seems like in many ways, they are working on information gathering on this unique daughter of ours as she doesn't fit neatly into any category that would guide our plan of care for her.

We really don't have any idea when we'll all be home again. We're still hoping for sometime tomorrow, but the funny thing about waiting is that it is God, not us, who knows how long we will have to wait.

I still think that's one of the reasons that we are so often in the Bible instructed to wait for the Lord. If everything always came to us right when *we* wanted, we would not have nearly the opportunities to live trusting Him to be our supply, our satisfaction, our everything. How long we have to wait isn't nearly as important as how we wait. Because regardless of the length of the wait, it is our attitude during the wait that reflects what we believe. Are we anxious? Or do we trust that God will do everything at just the right time, whatever that time ends up being? It is easy to see him in the times of fulfillment, but it is in the times of waiting that we really get to live out what it is to know him.

These two...

Daddy and Mira are back up in the neurosciences unit at Gillette where Mira spent part of her hospital stay a week ago. She is stable, and they're talking about a short stay, sending her home on some new antibiotics and keeping her on "sick mode" as far as her lung-health home regimen.

We're still waiting to hear what a "short" stay entails.😏

But around here, life still goes on. These two, our oldest and youngest, are lots of fun to watch interacting! Here are some snippets from the last few days.

Under the table, trying on Bobbi's shoes.

 Gloria always makes a bee-line for Bogomila's room whenever the door is open. She scrambles up on the bed and makes herself at home with all of Bobbi's things.

A surprise on mom's phone!!

We try to get Bogomila outside every day to do some walking stints (with me walking behind her, supporting her under her arms.) We have lawn chairs or a bench in various places around the yard as destinations, and a fairly common routine is to do some walking, and then Bogomila will ask for her "mix" (peanuts, raisins, a few almonds and banana chips). Gloria loves to hang close by when Bobbi's got a bowl of mix!

This is pretty sweet, but it was even sweeter to then see Gloria a few days later with her own bowl of a dozen raisins, go over to Bogomila and offer HER a raisin!

 Just before lunch today Gloria toddled over to Bogomila's room with a little bird whistle. She blew on the whistle...and then offered it to Bogomila! She laughed, but then fulfilled her big-sisterly duty and blew in the whistle for Gloria. Back and forth, back and forth. Sweet girls!

Eight hours...or not

We went to bed last night a few minutes before 11 thinking maybe, just maybe (well, okay - *I* was thinking it. Matt doesn't usually share my optimism in things like that!) we could get a full, uninterrupted eight hours of sleep!

It ended up taking about half an hour to actually get down to the business of sleeping, but that still left 7.5 hours ahead of us.

We got three and a half.

Matt's back in the ER with Mira, and it looks like they're going to admit her for the day and we'll see what comes of it.