Monday, December 24, 2018

Merry Christmas

Which could also be titled, "Things don't always go as we have planned."

First of all, there was our valiant attempt at a nice Christmas photograph. Last year, Mira was at the end of her six week hospital stay, so we couldn't get a photo with everyone. This year, we dressed nicely for the Bulgarian Christmas party, and found a friendly stranger out in the hall just before the potluck line opened who was willing to take a series of photos for us.

We got home that night, looked through them, and found we had a good one!!!
Except there's one problem with the photo. Leah pointed it out, first, after trying to figure out who Eben was supposed to be matching in his green. Reuben, of course, who was dressed in a nice, green dress shirt. Reuben, who stood with us for a few moments and then found his way to the cupcake section of the buffet line. Stinker.

But no worries - we can try again at the Christmas Eve service at church, right?

Well, here's where that got us:
You'll notice we're missing more than just one in this photo. But between the stomach bug that's worked its way through our family this weekend, and the trip that Matt took with Mira to the ER to get her admitted for (a rather mild) pneumonia that overlapped with the time of the service, this was all that made it. I shared it with Matt at the hospital, and his response that it wasn't bad except for the missing adult and five missing children. :P

Needless to say, tomorrow, Christmas Day, is going to be a pretty low-key day for us as well as those who are still recovering keep recovering. We'll try to bake cookies. Matt's hoping to watch one of the gospel movies (maybe John again - he and Bobbi watched it while she was still inpatient). And although it would have been fun to go with the original plan to be with their local cousins and open a bunch of presents, it's also good sometimes, to NOT have anything of that sort going on for Christmas Day, because so many times, it can just be a distraction.

Two Sundays ago, the advent theme at church was joy, and our pastor preached a simple, yet powerful sermon on the source of joy. He looked at the joy of the wise men and that of the shepherds, and made, from a basic, familiar text, a bed-rock-of-life giving source of joy. So, when exactly is it that the wise men rejoiced? What was the trigger for their rejoicing?
When they saw the star, they rejoiced exceedingly with great joy. ~ Matthew 2:10
And that's it. See that? It's not when they saw Jesus with their own eyes, or when they saw the star first appear and they started their journey. Instead, it's when they (reading from verses 5, 6, and 9), saw that the star stopped right where God had said it was going to stop. The source of their joy is not directly that Jesus was born, but that God is true to his word. His word can be depended on. (And, by the way, isn't the description of their response fabulous? It's not enough to just rejoice, or rejoice with joy, but they are rejoicing exceedingly with great joy.)

You see a similar thing with the shepherds on the very night of his birth.
And the shepherds returned, glorifying and praising God for all they had heard and seen, as it had been told them. ~ Luke 2:20
The same reasoning is there - it's because everything they'd seen had been just as they'd been told it would be. When God speaks, it's dependable. 

Because, really, if God's word is not dependable, then the Word, Jesus, is not dependable, either. But because God does prove his word to be true, all of what he has promised is solid enough to base our life on. And that's a source of joy that the unpredictability of our own existence just can't hold a candle to. So, while things don't go as we have planned, that's okay. It never strays from what He has promised.

And with that, a Merry Christmas to all of you!!!

A quote

"Walking is so hard! I don't know how people do it."
This from Bobbi as we helped her walk, with teeny tiny baby steps, from the bathroom to her bed a few days ago. I am carrying much of her weight, and Daddy is keeping her adductors from pulling her feet together, and guiding them forward one step at a time. It's quite a production, but she's doing it!!

Thursday, December 20, 2018

She's home!

The quilt's not done, but Bobbi's home! And that's more important anyway. Today she got to help mix up the batter for the brownies for the dessert we're making for Daddy's birthday tomorrow.

Also important, and explaining why my photo of Bobbi is of her flossing her teeth in the old bathroom...our dear friends, the Martins, are back in town for the weekend, and offered to come over to help out a bit on the bathroom! So, this morning, Chad and Matt ran to Menards to pick up drywall and backer board and moved it into the bathroom. Tomorrow afternoon he's going to come back for a while and work with Matt on putting it up onto the walls.

Monday, December 17, 2018

So close...and yet so far

I've made a quilt for each of my children - Owen's was made and hanging on the side of his crib rail for months before he was born. Leah's was started before she was born, but then not finished until after Reuben arrived two years later, and by then, I decided I wanted to make her a more girly one, so I finished hers for Reuben and made a more flowery one for Leah. Since then, I've managed to plug away, and each of the kids has gotten their special quilt - not big enough for a bed or anything, but big enough to wrap up in. But when Gloria was born mere weeks after committing to Bobbi and Mira's adoptions, things kind of fell apart on the quilting front!

My goal was to have at least Bobbi's done before she got home.

I didn't. You can see a photo of it in process from this post from nearly two years ago. Since then, I've made progress on Mira's, and somehow managed to finish Gloria's (which was started first of the three), but Bobbi's still isn't done.

I'd thought I'd have it done before she came home from her surgery.

Nope.

And now I still have this crazy idea that I'll get it done enough for her to at least use before she comes home this Thursday - I have all of the quilting on the black portion done (finished up while giving Rinnah her math lesson this afternoon), and although the colored "feathers" should be quilted, too, I could do that after the fact. Tonight I trimmed the edges, so now I just need to put the binding on.

Just the binding. Which I still have to pick out and cut and ...

But maybe, just maybe, I could have this on Bobbi's bed by Thursday???

And if not Thursday, then maybe in late January in honor of her being home for two years. 😋

And then I can get back to work on Mira's. And Eben's.

I just looked at Matt's photos from today, but I think I'll see if he wants to take a shot at telling about them in a post since I'd just be making things up! He decided to stay down there all day today, and will try to come home to see the rest of us (and get his things done here that need to be done) during the day tomorrow, as Bobbi has visitors coming at both lunch time and supper, so he can be home without her needing to be alone...

Sunday, December 16, 2018

Day at home

I'm beat, but just briefly wanted to share - it was SO good having Bobbi home for a longer stint. There's still a lot that she needs help with that she used to be able to do by herself, but getting through the weekend gives me the sense that we'll be able to manage when she gets back for good on Thursday. Besides, we just all really miss her when she's not here!

The bath was a success. It takes me and Daddy to lift her in instead of just me like it's been for the nearly two years since she came home, but we have some creative ways to manage that. Along those lines, Matt thinks that the week of Christmas he might actually have some time to work on that new bathroom!!! Crazy.
Foozie, the cat, is glad to have Bobbi back.
And Eben and Bobbi are starting to have quite the thing going. Pretty sweet. ;)
 By the way, it says as much about Krassi as it does about Eben, but when I put Ebs into Krassi's eating chair while I'm working in the kitchen (for a change of scenery for Eben), I don't have to adjust the strap around the waist.
It works equally well for my fourteen year old son as it does for my not-quite-five-month old pork-muffin. We stood that little man on the table after supper tonight and all delightedly laughed looking at the fat pockets on his knees, the dimples on the backs of his thighs...

Saturday, December 15, 2018

Rehab: weekend pass

Tonight we have all ten children sleeping in the same house...and Matt and I both home, too! A-MA-zing.
Leah's sleeping over in Bobbi's room so not only do Matt and I get to sleep in the same house tonight, but also in the same bed. Bonus.

Our homework assignment for the weekend is to see if we can get Bobbi a bath...in the old bathroom, of course, since nothing has happened yet on the new one. We'll see how that goes tomorrow afternoon!

And now, Good Night!!

Tuesday, December 11, 2018

Rehab: Bobbi the Robot

How cool is this???

The idea is simple: the machine can carry any percentage of Bobbi's weight for her (50% as shown above), can go at whatever speed they want to set it at (starting slow yesterday and today, but at the end of today's session, was going at random speeds to get a feel for real-life walking), and can help with 100% of the work of moving her legs (as shown here), and gradually go down from there (as will be shown in upcoming days and weeks). It's a combination of strengthening as well as building up Bobbi's "muscle memory" as her brain and muscles learn what that patterns of normal walking feel like.

Whatever it is, it's pretty high-tech! She will use it regularly (I don't know exactly what that means) while she's still inpatient, and then has sixteen more sessions scheduled after she's discharged to get the full benefit.

Monday, December 10, 2018

For those who pray

I know we've got a wide range of people reading this blog. Without any details, this post is for those of you who believe and are praying us through these days.

There is some good stuff going on, and if you would pray tonight for God's protective hand to guard a certain situation through the night and the remainder of this stay, we would be grateful.

...so that through the church the manifold wisdom of God might now be made known to the rulers and authorities in the heavenly places. This was according to the eternal purpose that he has realized in Christ Jesus our Lord, in whom we have boldness and access with confidence through our faith in him. - Ephesians 3:10-12

Saturday, December 8, 2018

Day Pass

Today we got a day pass for Bobbi so she could come home for a bit and then go to the Christmas party that the Bulgarian community here in the Twin Cities puts on every year.

It was really nice to have her HOME. Dad took Owen and Leah down for the morning during her therapy sessions, and then they all came back together for the afternoon before we left for the party. Sorry some of the photos are not so great - my phone apparently has a scratch on part of the lens, and it catches the light in funny ways sometimes and the photos just don't turn out...

 Petting the cats was an important part of being home.
Doesn't she look *great* sitting on the edge of her bed like that?? She didn't used to be able to do that this solidly. Even neater is that she got herself from lying down to this sitting position by herself.
A truly unexpected bonus of adopting Bogomila has been our exposure to another culture - not only with the foods and language that she adds to our immediate household, but also through the other Bulgarian families who live around us that we have met because of her. The photos, again, are lousy [ding-ding-ding!!! If Mom waits long enough to post, she'll find that someone was taking nicer photos that night, and since I'm part of the "Bulgarians of Minnesota" facebook group, I've got something nicer to share!!!], but here are Leah and Rinnah doing traditional Bulgarian dancing with other children from the Sunday afternoon Bulgarian school to start off the Christmas party.


 And some of us mingling/waiting around for the potluck food to be set out.



 It's a big crowd!!
And I wish we had photos of the food. Because, although some of the stuff is just typical potluck fare, plenty of it is good Bulgarian food - what a treat!!! And going through the line with Bobbi means I know which traditional foods I should try, even if I can't recognize them.

Santa and Snow White visited, with presents for everyone. We've never done the whole "Santa" thing with our kids - I'd rather not invest time in convincing them of the reality of someone/thing that I know full well to be untrue. The thought of having to someday explain why I was misleading them has never appealed, so even here our kids know that the guy dressed up as Santa will give them the presents Mom wrapped earlier that day. I've learned that the Bulgarian alphabet is a beautiful thing if you want your unusual last name pronounced correctly. Purely phonetical, I can write "Глеви" on each package and know that the name will be read perfectly. No "Gluey" here!!

It's an interesting night to be where the main program is all in a foreign language, but everyone there (except for some of the oldest generation) speak great English as well, and I figure it's a good taste of what it was like for Bobbi when she first came home and couldn't understand more than an isolated word or two of what was going on around her.

Half an hour drive back home, Matt helped me carry people into the house, and then he and Bobbi were back to Gillette in time for her bath, and Leah and I got everyone tucked into bed.

Thursday, December 6, 2018

Rehab: First steps on land

No photos, because Daddy accidentally left his phone at home last night, but twice today Bobbi took real steps with her new legs. Here's part of the email Matt send me after the first session in the morning:
Bobbi had a pretty good morning so far. She was in her stander during school and recreational therapies and then switched the chair and went directly to PT where they stood at the parallel bars. She was tired and shaking by the end and she said she was not ready to take any steps, but with a lot of help she was able to take 10 steps. It is not what she WANTS, but it is progress. She feels like her feet are stone and are stuck to the floor. But I keep thinking she is just over 2 weeks into a 16 week* recovery...if we can just help her to be patient and to see the progress that she is making, she will get there.
That was the morning, and when Matt got home early afternoon, he reported that she did it again for ten steps in the session she was in when he left. (*the sixteen weeks Matt refers to is NOT hospital recovery - thankfully! - but based on what her surgeon told her before the surgery: it's going to be a long road, but six months past surgery she'll be able to look back and say that it was worth it.)

The girls and I (minus Mira, plus Eben) got to spend a few hours with Bobbi later this afternoon - what a sweet time. We're looking forward to her being home so we can all be under one roof again, but she's pretty delighted with her hospital room. (Particularly when the people from home keep coming to her!)


Bobbi's room is one of two (the other is unoccupied) that instead of being on the main hallway loop of the rehab unit are on a little dead-end off the main loop. It makes the room VERY private, even with the door open, and that little dead end hallway is a great place for little sisters to play with paper airplanes!!

Mira's moment

Look who's got her moment of fame! We were contacted to see if Mira would be willing to be a model patient during her aerodigestive clinic appointment, and here she is!!

Wednesday, December 5, 2018

Rehab: Day next

Today Bobbi ended up spending 12 hours on her own. Matt came home this morning after she went to her first session, and because of how the day worked out, he wasn't realistically able to get down there again until nearly 9pm this evening.

She called in the afternoon, just to talk. She's lonely. And teasing that we must not love her since we're not coming to see her! Silly girl.

But at the same time, not so silly. She may be an adult in age, but she's also less than two years into knowing what it is to have parents, a family, to be truly loved and not just cared for. (Because she was cared for. Her history is so very different from that of Tsvetomira and Krassimir. She came home with a photo album of her past - birthday parties at the home, group outings to the zoo in Sofia, time spent lounging on the couch with caregivers and other kids. She's still in touch regularly via facebook not only with some of the other kids she grew up with, but with quite a few of the staff as well. They care about her, and want to know how she's doing, and she cares about them.) But having someone care for you is not the same as having a family who loves you, and is in it with you for the long haul.

Additionally, regardless of how she was treated by the staff around her, there was still the over-arching reality that, with her physical disability, there was NO future for her in that country. Besides the tremendous challenges of trying to navigate adult life without the support of a family who's got your back, is the basic reality that living in a wheelchair means that most of the world around her was just simply not accessible, and certainly not accessible without assistance. Makes it hard to get a job, an apartment, groceries - anything! In many ways, her ability to survive her childhood in that world was by very exclusively living in the moment, leaving her with very little ability to cast a vision for the future. Despite that, we are seeing an amazing self-determination in her, but it's balanced by a tendency toward despair (as in, why did I ever have this surgery? It's never going to be better. I'll never be able to walk.) With that girl, it's kind of all or nothing. 😊

We have the joy (and intense work) of being a voice of truth for her in the down moments of the days. Yes, it's already getting better! If you were able to do the walking you were doing before this surgery, you really are going to be able to get there now that the mechanics of your legs is working for you and not against you. We're just at the beginning of a very long road, but it's road with something really worthwhile that we're (literally!) walking towards! There's a goal at the end of it, and it's going to be worth it, and we're here with you every step of the way, and we love you every step of the way, and when you feel like giving up, we're going to be there to pick you up and help you keep going.

Matt accidentally left his phone here on the charger when he left for the hospital, so I'll have to wait until tomorrow to see how the rest of the day went. And tomorrow, I'm hoping to swap with Matt and get down there myself with a few of the kids to see her. We miss her here.

Tuesday, December 4, 2018

Rehab: Day...I don't know - what day is it??

This is brief, because I've got a bit to do to help Mira settled in for bed - single-parenting these nine is keeping me busy!

BUT, I do want to share a photo that Matt took this morning.
Look who's walking in the pool!! Slow, small steps, and up to her neck in water, but she was walking. First steps since the surgery.

And, as I was looking at Matt's photos to grab that one, I saw two more that he must have taken during her afternoon session:. First, here she is on a sort of bicycle type machine that alternately flexes her legs to varying degrees as the therapist sets it.
 And back again at the parallel bars, but this time, from what I remember Matt telling me, with no KIs!! (knee immobilizers) It was just for a few minutes, but that's a big step forward.
Regardless, during their weekly Tuesday meeting, the team working with Bobbi has set us a tentative discharge date...of...December 20th. That's still sixteen more days!!! We knew this was a big deal surgery, but what we knew was six weeks immobilized in a casts, and then lots of therapy. We did NOT know until after the surgery that inpatient rehab for a week or two was a possibility. Okay. That's all good. We also did not know that six weeks in casts could be six to eight weeks (though those last two weeks went SO much better than we'd originally thought when we learned at five weeks that we were not nearing the end). And it wasn't until today that we learned that the one to two week rehab stay might actually be a four week stay!

But, after all that, Bobbi's going to get her wish of being in the hospital over the Christmas season! When Mira was in over her birthday and all of December and Christmas last year, she was visited by Santa a number of times. We "knew" (ha ha, what we know!) that Bobbi's surgery was going to be in the summer, so neither over her birthday OR Christmas. But here, on one of her first inpatient days, they had a November Birthday Party for all the inpatient kids with a November birthday, so she snuck in on that one, and now she'll be there until the few days before Christmas, and I have a feeling she'll get a visit sometime during that time from a man in a red suit.

Saturday, December 1, 2018

Rehab: Day 5 (though it was only a half day...)

Last night our (very small) small group met for supper and Bible study like we've done on Friday nights for as long as Matt and I can remember. The group has shifted and changed over the years, but it seems like that Friday night slot has always been the best time - nothing going the next day means that we have the luxury of the time that we need.

We're going through Ephesians right now. We did a quick blitz through it at the end of the summer right before our dear friends, the Martins, moved three hours north of here, wanting to share with them what we knew we were going to be studying at a slower pace in the fall. I mention that because even after years of reading that Book, it never ceases to be fresh and new. We've gone through Ephesians many times over the past years, even reading part of this chapter (3) at our wedding, but last night I saw something that I've never seen before. Paul's been talking about the amazing mystery of how the Jews (his chosen people) and the Gentiles (everybody else) have been made into one new "man" through Jesus Christ. I'm not going to take the time tonight to go through everything we discussed last night because I need to get to bed, but am waiting for my phone to charge before I head up, but here's this, which I have honestly never seen before:
...so that through the church the manifold wisdom of God might now be made known to the rulers and authorities in the heavenly places. - Ephesians 3:10
A few things. First, this it is through the church that this thing is going to be displayed (and what thing? Well, the manifold wisdom of God!) and this church is one body made up of each one of God's people, Jew, Gentile - all of us. And to whom is his wisdom made known? This is the part I'd never noticed - it's made known to the rulers and authorities in the heavenly places! The cosmic scale of this is mind-boggling to me. Through us, the church, acting as the church, through that God is showing not just other humans, but the invisible powers of the spiritual world, how very wise he is. This is big stuff, and he's doing it through his Church.

It makes the next few verses when he's talking about his suffering, and the boldness with which we can approach God in prayer make a bit more sense. It's also another reminder to me that every mundane piece of my every-day life is feeding into something beyond what I can even begin to imagine.

So, for anyone still reading, because I'm really shorting this, what in the world does this have to do with the title of this post?

Well, Bobbi had a good night, and it was great having Faith stay with her to give us a bit of reprieve. Faith left this morning after Bobbi went to her first therapy session, and my plan was to go down before she finished her sessions for the morning. I had to be back at the house no later than 2:00. As I was working out the day in my mind, waiting for Eben to wake up and nurse so I could leave, and wondering how Bobbi was going to tolerate the times she would have to be alone today, Rose (Krassi and Reuben's Rose) texted to see if sometime after 2 would be a good time for her to go visit Bobbi.

Um, yes!!! That leaves Bobbi with about an hour to herself. Perfect.

So Gloria and Eben and I got down there in time to spend about half an hour with Bobbi. She was having a tougher time - the things they're wanting her to do hurt, and it doesn't feel like she's making much progress. The session ended on a good note, though. Her therapist finally convinced her to do one minute of standing at the parallel bars. She managed to get her up to standing, and at the end of the minute asked if she could do more or if she was done. "I don't know," was her response. I smiled with pride at the internal battle I saw. "I don't know," is NOT, "No." It's more like, "I don't know if I can, but I want to, but don't know if I've got it in me." By that point, we'd made it another 30 seconds, and she decided on her own to go for three minutes. By the time we were done, she'd made it for SIXTEEN minutes!!!

Victory. On many counts.

Our friends, the Dunmires, told me earlier this week they wanted to bring some of Bobbi's favorite food to the hospital tonight. He stopped through our house to drop some (tons!) off for the rest of us before heading down to see Bobbi. Good. Someone to break up that part of her day, and do supper with her. Even there I was not missing the fact that through the simple actions of his Church, our daughter was being cared for.

Imagine my surprise when Matt finally called me a bit ago to touch in before bed, and he told me that Rose stayed until Doug got to the hospital, and Doug was still there when Matt got down to the hospital. All day long, and with Faith, Rose, and Doug, Bobbi had to spend less than an hour alone. They didn't plan that out together - each of them was just doing their own little part in their own weekends, but behold! the manifold wisdom of God.

And it's not just us who are witnessing it. Beautiful.

Friday, November 30, 2018

Rehab: Day 4...updated

Well, as they say, "All good things must come to an end."

I'm not going to say that we're really at the end, but today (starting last night) was a rough day for Bobbi. She's working crazy hard, with a very full schedule of things that are hard physically, don't always feel good physically, and are wrapped up with many emotional things that make it hard mentally as well. It also happens to be the day that Grandma had to go back to Wisconsin, which means that on her roughest day going into it, Bobbi also had to spend the most time alone that she's had to do all week.

Daddy got to go back down to spend the evening with her - he left about an hour ago. Hoping that puts a nice end to a long week. Tomorrow she has a half day of therapy, and then Saturday afternoon and Sunday off before starting up again on Monday.

Phew!

~~~

UPDATE:

Matt just emailed saying that Bobbi was in better spirits when he got there this evening. He found her chatting in her rolling stander at the desk of the Ronald McDonald house. My first thought is that she was there scoping for potato chips. [grin]

But the best news is that our friend, Faith, is going to be able to spend the night with Bobbi, so she doesn't have to be alone AND I don't have to be alone, here, either. So very good on so many counts.

Thursday, November 29, 2018

Rehab: Day 3

Starting the morning by snatching up Eben. He looks almost as big as she does!

Little sisters reading books. (They both wanted to come visit Bobbi.)

After PT, Bobbi rolled herself back to her room in the rolling stander.

Lunch time for Bobbi (while in her CPM machine loosening her knee), and nap time for Eben.

Fun photo op in the Ronald McDonald room.
And I have a funny story to share, but I'd better clear it with Bobbi, first, so this is here just as a place holder...And...I've got her permission, so I'm coming back here to add it! As she and I were wheeling around in her stander, we ended up going past the main nurses' station in her unit, and she's tall enough in the stander to see that they have two computer monitors with an array of cameras playing continuously...with views of each hospital room. Oh no! she exclaimed, upon learning that the nurses were able to watch her continuously. I think I was picking my nose earlier today!!! I couldn't help myself and burst out laughing! What a delightful thing that, of all things you might be caught doing on camera, THIS is the one that she was worried about! Apparently its been a pretty decent week so far. 😊

Dad and Leah got down in the afternoon to eat supper with her. Tonight Grandma's staying with her, and then going back to Wisconsin in the morning. Then begins the real shuffle. It's been SO helpful having her here to be a third adult in the mix as we shuffle back and forth.

Wednesday, November 28, 2018

Rehab: Day 2


Rinnah joined Dad on an afternoon visit to Bobbi today. Grandma was with her through the whole day, and is spending the night with her again.

Today Bobbi got to try out this cool rolling stander. It serves multiple purposes. First of all, it gets her standing for long periods of time without really realizing that she's standing because there's other stuff to distract her, or at least that's Dad's hypothesis! It also gives her a good cardiovascular workout, especially considering she's supposed to get out in it for three thirty minute stints outside of her other therapy sessions!!
She likes it. She finds it easier to maneuver than her wheel chair since the wheels are more out in front of her where she grabs them. She thought she would see if they noticed if she tried to bring it home with her!
Here you can see her in action!

And Eben's waking up and looking for something warm to drink, so I'll let Matt finish up the post if there's anything else he wants to add!!

During a small bit of "down time" before supper Bobbi was working on writing some notes. Her schedule is pretty busy, but she does get a little break around lunch time and in the evenings.

Tuesday, November 27, 2018

Rehab: Day 1

Since yesterday was really just admit and get settled, today is what really counts as Bobbi's first day of rehab.

Eben and I swapped with my mom in the morning so I could be there for the OT evaluation. Bobbi and Eben spent a few minutes catching up before the therapists arrived to bring us back to the therapy area.
The session was as much working as it was evaluating. As the student went through a list of questions with me about our goals for Bobbi over the course of the stay, the therapist herself had Bobbi working - sitting up with her knees tolerating as much bending as she can, and playing Go-Fish while making her reach all over with her right (non-dominant) hand both for fine motor and core/balance practice.
I had to laugh as, while we were discussing her current bathroom situation at home, I thought the quickest way to show them what we have and will have (if Matt ever gets more than 20 minutes a week to work on it!) was to just bring up the appropriate post on the blog!

That hour long session was followed immediately by 30 minutes of physical therapy. Standing was the big agenda for the day. Two minutes was the therapist's goal, but Bobbi pushed through to five.




 Eben managed to keep himself occupied.
Then we were back to our room, with a quick detour through the regular clinic area to say hi to Daddy and Mira while they were waiting for her Quick-Care clinic appointment that we set this morning. This one did NOT end up in a hospital admittance, though Matt as a matter of course keeps a bag packed with the things she needs for a hospital stay and brings it along any time we're getting her checked out at the Quick-Care clinic because more often than not it results in a stay. But not today. She's still quite agitated, but neither we nor the doctors could see an obvious cause for the disautonomic storm, so have her back home for observation. There may not be a reason. Her lungs sound good, and there's no obvious signs of a UTI, so we're just going to keep an eye on her, knowing that a trip back to Gillette is easy enough if we need to do it.

The two families in the rehab unit that we met at lunch today are from Wisconsin (one state away) and New York (a little farther than one state!) It's just another reminder of how grateful we are to be this close to a really great medical facility. It's still a little odd when you can't walk down any hallway without not only recognizing staff, but having them recognize us, too!!

Eben, Mira, and I came home after lunch, and Matt stayed for her afternoon therapies, with him and my mom swapping after supper. She will stay the night again. We're grateful for that because Mira, although home, is not very comfortable tonight.

Monday, November 26, 2018

The big rehab begins

It ended up being eight weeks instead of six weeks in the casts, but today was the long-awaited day when Bobbi begins her inpatient rehabilitation stay at Gillette. Dad, Eben, and I joined her as they began with removing the casts, taking x-rays, meeting with the rehab doctor who will be overseeing her stay, and then seeing Dr. Healy to confirm that, yes, we're seeing the degree of healing he wants to see in her bones before beginning the intensive work of getting up on those legs. She got the final fitting on her ankle-foot orthotics, and then we found our way (with the help of her physical therapist for the duration of the stay) to her room in the rehab unit - a new unit for us at Gillette.
The casts are going away! (The tool in the tech's hands is the saw that will do the work...)

Washing her legs a bit after the cast removal.

Taking a few minutes with Eben

Watching the bubbles while Bobbi got her x-rays taken.

I still marvel at these images. The one on the right is before. Notice the location of her kneecap. The one on the left was taken today. Now, do we wonder that she wasn't able to ever straighten her legs?? It still boggles my mind that anyone can do something like this to the human body and expect it to work.
Bobbi got to use the remote control to lift herself from her wheelchair into her bed.

Batman, who was a gift from Grandma and Grandpa (Andrea's parents) during her first hospital stay, "decided" that he was going to come along for rehab as well. Here Bobbi and Batman are optimistically checking out their new home for the undetermined future.
My mom is in town with us again, and will do the honors of staying with Bobbi at the hospital so I don't have to take care of everyone here single handedly. Eben in particular is going to miss his sister, because now that 1) her room is available, and 2) she's not here to be bothered by some crying, he's going to get some practice sleeping a little bit more during the night. For the last week he's been up about every hour and a half wanting to nurse and snuggle for an hour, leaving me with very fragmented sleep. Poor guy himself isn't really hungry, and by the 5am awakening is pretty overtired, too. We're hoping a slightly more secluded place will give him the chance for some more undisturbed sleep, and that he and I will only snuggle once or twice during the night. The duration of her stay should be the perfect amount of time to settle into some new sleep rhythms!

In the meantime, we're pretty excited about the changes that the next days/weeks hold for Bobbi!