"Dream job"

We're so grateful for Rose. She's with the boys four days a week after school until supper time. Today, she and Reuben played around in the leaf pile that the other kids had collected over the weekend, and then Krassi (and three little sisters!) joined them after he got off the bus an hour later.

They came in at supper time dragging all kind of leaves and dust, and it was a beautiful thing. I was teasing Rose a little about being covered in leaves and needing a bath when she gets home, and also thanking her for helping the boys enjoy this amazing end-of-October day. Her reply? "It's a dream job! No sitting in front of the computer all day for me!" No wonder the boys (and girls) love spending time with her. She has enriched life for all of us.

Our beautiful girl

Courtesy of Lying Dog Photography (website here), here are a few of our favorite shots from Bobbi's senior photo shoot.

 She has REALLY liked her new short cut. The night before her surgery I set her and Daddy next to each other and took both of them down with the 1/8" trimmer, and over the last month its been growing...and we haven't been sure what to do because it's nice to take a bath or shower after a hair cut like that, and bathing is off-limits until the casts are off.

But a few days ago we came up with an ingenious idea that Owen helped me pull off today. Roll her onto her tummy and hang her off the edge of the bed and arm Owen with the vacuum, and we were off and running.

Now she's back to her new normal, and very happy about it.

Room to breathe

Things around here are still at a level that I hope is not our new normal, but the crisis of Bobbi's first week out of the hospital is definitely past. She is getting comfortable enough that I can move her with the help of one of the older kids (Owen or Leah) instead of always needing two adults, and preferably one of them being male (taller and stronger than me!)

I've taken a slightly different approach to our home school this year. I have the entire year planned out day by day. Well, I guess not entirely, as in, I don't have every single Bulgarian language lesson planned out - we take that as it comes - but all of the core subjects (math, English grammar) are scheduled for the entire school year, and with that, I've scheduled in days for things that we always want to do, but don't usually make happen because it takes a degree of advance planning that I can't always justify. But this year, once a month, we have a Field Trip day on the calendar, and for October's field trip day which happened earlier this week, we hiked around Pike Island (which lies where the Mississippi and Minnesota Rivers join).

And what does this have to do with everything going on lately? Well, simply, that Bobbi and Mira are both doing well enough that Matt and I were comfortable leaving them both with Rose and a number to text our neighbor who lives behind us in case Bobbi needed to change position while we were gone.

So, while the level of care that our children are requiring of us these days is still all-consuming, and then some, there's also just a touch of breathing room that lets us take days like you see above where we can enjoy the freedom of doing something out of the ordinary with the others. (On this particular day, Krassi was at school, so we took Owen, Leah, Rinnah, Evania, Gloria, Eben...and at the last minute, Reuben, too, since he'd had enough seizures the night before to miss the first half of school, and was doing well enough that instead of dropping him at school on our way to the island, decided to just bring him with us.)

She's home

So, for the moment, we have all ten of them back here where they belong.

Visiting Mira

Many of us were just getting too lonely for Mira to keep waiting for her to come, so when we had a decent window of time open up yesterday morning, we took it! Eben and the four girls and I zipped down to Gillette, and spent about half an hour stroking Mira's hair and back and holding hands.

She is looking SO much better. (And sure enough, this morning we got a call saying they wanted to keep her one more day on her normal home routine, and then hopefully send her home Monday!)

 It's always so good to walk in, and see her sitting up in her chair with her hair all prettied up! Double french braids and a big thick ponytail, thanks to her night shift nurse.

 Eben took a short stay on the hospital bed, and was totally captivated by the ceiling.

We're all ready to have her back. It's kind of crazy how much her presence is missed for a girl who doesn't move at all or say anything!

Food for the soul

Yes. I am a home school mother. And, yes. I do enjoy diagramming sentences.

I was reading through Romans a few days ago, and this verse (8:6) just jumped out at me for a variety of reasons. Go ahead and read it; it's got such a directly parallel structure.

What is your mind set on? the flesh? or the Spirit?

And what is the result of that? For the one, it is death. For the other? Well, not that creatively, it is the opposite: life. But even more beautifully than that, is that beautiful split line at the end of the diagram. It is not only life, but life and peace.

Stir crazy

There are only so many variations to "lay on your back," "lay on your tummy, "sit in your chair," "sit in your wheelchair" that we can come up with, and the lack of easy mobility means that even though Bobbi tends to love holding out alone in her room, there can also be (way) too much of a good thing. Today the weather was amazing, so we went for a walk down to the bank a half mile away to deposit a check for Grandma and so Bobbi could enjoy their free coffee. ;)

I'm sure we were quite the sight parading down the street! Our house, on the frontage road to a small state highway, is not exactly a private road. We started out with me, Bobbi, Gloria, and Eben, but added three more (Leah, Rinnah, Evania), as they passed us after coming back from an outing with a neighbor. But what a great day to be out!

Eben, however, found it to be a great chance to pick up one more nap before bedtime.

Later this evening we went even crazier, and rolled Bobbi two houses down to our neighbors where we managed to lift her chair up one step onto their large front porch, and then just bump it up through their door for a visit inside!

There's nothing like a night out in new surroundings with a cat! to help break up the day.

There's a long way yet to go with the complete immobilization, and then rehab, which is going to be just as long of a road, if not longer - getting the casts off will be huge, but then comes the real work of building back up muscles that have atrophied during recovery, and of learning how to communicate with muscles, tendons, nerves, bones, that are all in different places than they used to be. I anticipate many, many challenges with frustration, and repeated opportunities to practice fixing our eyes on the goal to give strength for the work of the day.

But I think it's going to be worth it!

Status report from Matt

This is lifted from an email he sent to my dad earlier today - figured it says everything I'd want to say, anyway, and saves the time of re-writing it! [I've added some commentary in brackets to fill out details.]

~~~

Mira continues to make progress. As of yesterday when Bobbi and I stopped in to see her [Bobbi had an appointment for something unrelated to her legs at Gillette], she was down to 1 L of oxygen on her nasal bi-pap and they had pulled the foley catheter and had stopped the antibiotic they had started her on last Thursday. This morning when I checked in with the nurse, they said she had been on room air since midnight last night and was holding her saturation levels. She is still on continuous bi-pap, but they were going to try giving her a break from that today and see how she handles it.

Bobbi also continues to improve.  She has not needed any tylenol for the last 36 hours. She is still taking something at bedtime to help her sleep as she tends to get anxious and tight when it gets to bed time. However, the last two nights she has slept the best she has since the operation, so I think the better rest and lack of pain means we should hopefully not get so anxious at bedtime.

Mini bathroom update. I am hoping to wrap up some electrical and plumbing and exhaust fan work this weekend so I can get my rough-in inspections next week and then get insulated. It is a pretty chilly draft coming into the house from the old bathroom! Our boiler [which heats the large addition from a few years ago], which was down for 2 weeks waiting for parts was repaired yesterday (thankfully the gas fireplace was keeping things OK over on that side of the house). However, the new loop that we installed for the radiant is air locked, so the thermostat calls for heat and the pump turns on, but it doesn't actually move any water through the system. The technician gave me some pointers and Andrea and I looked at it last night and have a solution that will just require the addition of 1 purge valve in the new piping we added. Hopefully that will be enough to get us up and running.

Five years ago

 No longer would that old, sterile, concrete building be the place to house this boy...

His Mama's got him, and he's heading home!!! Five years ago today I walked out of that building with our oldest son. And though I'd like to poetically say we never looked back, you all know that wasn't the case, as rather than drive us away, we were drawn back again. (Hello, Tsvetomira!)

Heading in the right direction

Caring for Bobbi continues to be all-consuming. Not only is she unable to move herself at all, so requires regular moving to eliminate pressure sores, we need to plan in regular times for time spent on her tummy, time in her knee-moving machine (a minimum of three times a day on each leg for a minimum of thirty minutes), and time for routine things like eating, brushing teeth, toileting, some sort of sponge bathing, etc, etc, etc. Every day gets easier, and her pain is diminishing dramatically each day, but we're still WAY behind on sleep, and simple things like getting to the store, and are incredibly grateful for all of the people who are spending time here with us, either to give some attention to the other kids, or to visit with Bobbi, or to spell me or Matt so we can sneak some naps in during the day. We've had friends run to the store for us, and bring meals, which has been amazing.

We had time to tackle a hair wash today, using the same diaper method that we used on Mira before she got her bath chair.

Looks kind of relaxing, huh? The diaper absorbs most of the rinse water, and the chux underneath catches any stray bits. Her short hair cut is a LOT easier to keep nice than even her previous cut.

Watching Mom wash Bobbi's hair was an entertaining experience for a number of the small people.

And, in a fashion that hasn't happened for a while, we had a regular dance party a little bit later after Bobbi was up in her chair. We have a real appreciation for this sort of chaos.

Here's hoping we get some more sleep tonight. Last night was a good night. I got two 2-hour stretches, and Matt's were a little longer because he wasn't nursing a baby after our times awake like I was. Bobbi slept in nice and late this morning, so she's closing up her sleep gap.

~~~

Mira continues her stay in the PICU. What they had thought on Tuesday was going to be a short run through the PICU to stabilize her body temp has turned into two days with no talk of moving to a regular floor. We still don't really have a good idea what she's really in for...she's just not doing well, in typical Mira fashion - she keeps us on our toes. We are extremely grateful in this case for her previous hospital stays. We are VERY limited in our ability to be there with her during this stay, but every shift has been staffed by at least one nurse who knows her, and all of the doctors know her, and they are amazing at communication, so given the circumstances, I can't imagine her in better hands. But we still wish she was home in her little corner of the dining room where she belongs. But she's not ready for that just yet.

Reuben appears fine

He and I were there and back within four hours. Not the most restful way to spend the night, but we're back, and super grateful for our friend who took a text a little before midnight and was here soon after. Bobbi (and thus the rest of us caring for her) fell asleep a little after 4am when Reuben and I got back. Short night, but no one else has been admitted to the hospital!

Dozing in the ER waiting room.

What we know

First, an update on Bobbi. That one's easier.

We've made it since right before midnight last night without any of the heavy pain meds for Bobbi, managing it all today with regular doses of regular old Tylenol. Nice. She's had a few periods of discomfort, but nothing she couldn't work through. Today, too, she and Dad (and our friend Faith, who helped us out when she and Mira first arrived home from Bulgaria) went back to Gillette to have "windows" cut in the heel of her casts to relieve some of the pain she'd been having at that location.

They also stopped in to visit Mira.

Matt has not been able to spend nearly the time with Mira that he would like to be able to this time around. It is an odd sort of relief to know that she, being blind and deaf, and so impaired cognitively, is not particularly bonded with any of us, so she isn't particularly aware, so far as we know, that we are not by her side at all times. She's had enough stays there, that there isn't a shift where she isn't being attended by doctors who know her well, and at least one nurse who knows her, too. She is in good hands even when we can't be there with her.

We got a call tonight from her doctor (she's still in the PICU - they'd been thinking yesterday that it would be a short stay to stabilize her low body temp before transferring her to the regular floor, but it's turned out to be over 24 hours so far, with no sign of anything changing yet). He reported that her heart rate is in the 140s, and her body temp is up above 104. He was asking what we do to help calm her when she gets like that, and our response is that she doesn't get like that when she's home. The things we do when she's uncomfortable, like giving her an extra session in her Vest, or Daddy massaging that spot in the palm of her hands, aren't enough to counter this. She's also on a fairly high level of oxygen, and still only maintaining saturations in the low 90s. She's having a rough night, poor girl.

In the meantime, I'm here at home trying to keep up on various paperwork, Matt's trying to hit a work deadline for Friday for three different jobs, and Bobbi's taking her first venture out of her room. She's sitting up with Owen and Leah watching her overdubbed cartoons in her loaner wheelchair.

While we've slept *some* over the last three nights (unlike the two before that), they have not been full, restful nights. We could all use some good sleep. I'm really hoping that with her pain in a better place, AND being off the narcotics, that tonight's sleep has the potential to be more truly restful. Matt and I are camping out on cushions spread all over the floor of her room so we're there to adjust position, etc, as she needs it during the night. That means neither of us is in with Reuben, so we're kind of coasting on the fact that his bad seizure nights come with a few good nights in between. Tonight might end up being his bad night, however.

Rather than go into detail about how we've been surviving (not much more than that, but definitely still surviving, thanks in part to many generous friends giving of their time in various ways), I want to do two things: first, I want to send you back to the post I wrote about talking with Bobbi about her upcoming surgery. That, combined with what God's been showing me about being grateful in everything makes all of these things possible to navigate mentally. I have no idea why all of this is pouring in at one time - I have been only sharing the very tip of the iceberg of the various challenges that our family has been facing over the last two months or so. There are many heavy cords interwoven with fine threads ranging from our 19 year old cat dying to the birth of a baby (joyful, but sure adds another level of complexity in those early days when Mom's completely tied up) to a planned surgery to an unplanned PICU stay that it's awe-inspiring to have the image in my head of God pulling all of this together for a purpose to break what needs to be broken in me and to strengthen what needs to be strengthened in me (and not just me, but every single person who these different events touch).

With that, here's thing number two: I have a story for you, which fills in some of the details I was missing here.

So, Saturday night, about 7pm, Bobbi was discharged from the hospital and got to come home. That began a truly miserable night, culminating in a 4:30am 911 call when we'd exhausted our options for pain management, and her anxiety over the pain (not helped by the narcotics) causing the pain to escalate even further. Poor girl. Matt followed the ambulance down to the hospital in our little Jetta (easier to park!) and spent a few hours there not sleeping while they got things calmed down a bit, and swapped out one of her meds to give her something more effective at relaxing her muscles. Then they wanted to send her back home. (Yikes!!) So Matt had to drive back - so nice that we're so close! - and swap out for Big Blue because she doesn't fit in the Jetta with her casts. Honestly, we'd been thinking with the state she was in that she would be readmitted and he would not be bringing her back home that same morning, which is why he took the Jetta in the first place. He parked the Jetta way up on the driveway next to our trailer to give plenty of room to navigate Big Blue on the return trip, came in, got some breakfast, gathered a few things, and about 45 minutes later was back out the door to bring her back home.

I realized that we were going to need some extra hands during the day, because caring for her was a full-time-and-then-some job for both me and Matt during the night. We were both terribly fatigued, and knew we had a day full ahead of us. I made two unsuccessful phone calls while staring out the front window. Then I saw the Jetta heading down the driveway, and I mindlessly wondered where Matt was going...and then remembered...Matt had already gone!...the Jetta was leaving the premises of its own accord!!!! Phone in hand, I dialed 911 for the second time that morning (is that what you're supposed to do for runaway cars? I don't know.) Somehow, the car made it down our curving driveway, over the low garden wall at the bottom, across the street, through the ditch, across the west-bound highway lane, into the central ditch where it settled down and there it sat.

You have to zoom in, but it's there if you look.

Um. This is not good. The woman I spoke with from the highway patrol was delightfully kind, and said not to worry at all since it was out of both drive lanes. I called our neighbor and she took on the task of getting it towed out of the ditch. Then I emailed our pastor. "We need help..." And help came in the form of Faith and her mom (who is in our small group bible study).

It's kind of a scary thing to realize that you are so sleep deprived that you are (apparently) missing really important things like making sure your car is properly secured before leaving it, but the story became even more curious when we learned from the man who towed it out for us that it was in gear and the parking brake was engaged when he checked it out before towing it out. It started for him, too, amazingly, as he turned it a bit to get a better angle for the tow.

What in the world???

I'm only being slightly facetious when I say that the only option I can think of is that it was the hand of God that pushed that car down the driveway.

Because, apparently, we needed just exactly that much more stress layered onto that Sunday. I remember thinking at the moment as I was thanking God that my car was running away down the driveway that there must really be some truly marvelous shaping and forming that is going on. The precision with which my Surgeon is breaking and cutting and re-shaping is incredible.

I went out the next day to survey the damage done to my garden. I really, really enjoy my gardens (even to the point that I keep a crazy little blog that only I have the address for where I post photos of what's blooming, show me and the kids working in it, tell stories about plants that have come with special memories of friends and family, and talk about the progress, or lack thereof, of Matt's and my vision for the yard. It's fun having almost an acre to play with, and all of the raw material from his grandma's amazing perennial gardens). The garden at the bottom of the driveway is a newer one, and the limestone wall along our edge of it is still being constructed at the top edge. Just not this summer. Nothing at all happened in the gardens this summer, and only a little bit last year. When my parents' friend Carrie spent a week with us in June, one thing that really mattered to have her help with was mulching that garden around a few new plants our neighbor split off and shared with me so that I had one. nice. tidy. place that gives the impression that the home and yard is being cared for. It looked really nice all summer. To have that one bit of garden-sanity that we have this year get run over by my own car was not missed by me.

And yet, beautifully, when I went out the next day to inspect the damage as I checked the mail, (Oops. Columbus Day. No mail.) this is what I saw:

Since it's hard to see, here's a photo-shopped version to help you see the track that the tire made as it went through the garden.

It crushed one begonia (an annual - not a big deal in October), but ran right in between the others and my wild geraniums. It missed the daylilies, and one sedum was hit, but only lost a few branches. It will come back just fine in the spring.

The only real loss out of the whole thing was my favorite piece of limestone that I had placed carefully to work as a seat while we wait for buses at the bottom of the driveway.

Now that's the precision work of an extremely talented surgeon, if you ask me.

For some reason, the whole thing with the car has served to be a hugely tangible reminder that not a single thing that happens during this extremely strenuous time is happening by accident. It is all designed just as precisely as the way that car ran through my one decent looking garden.

Thank you to all of you who continue to cover our family in prayer through the weeks ahead.

~~~

Matt just got off the phone with the nurse in the PICU. I'll have him type a brief update after he gets back downstairs from where he's helping Reuben through his second big seizure of the night.

~~~

Mira is, as of last report, calming slightly, but is having a very tough evening/night. Her heart rate was in the 170's at times and her respiratory rate in the one-teens. That explains the high temperature...that is working extremely hard. After two doses of valium, a dose of ativan and another higher level sedative that I am not remembering currently, her heart rate is down into the one-teens. She is running between 50 and 60% oxygen (room air is 21%) and even with that, at some of the worst times her oxygen saturation was in the mid 80's. The nurse said her lungs still sound like they are moving air, but something is making it hard for her to get oxygen into her blood and is causing her to be very worked up.

~~~

Next thread...Andrea will be leaving shortly to take Reuben down to the ER. We will have to explain more on that one later.

Mira's in the PICU

'Nuff said. 😜

Party in Bobbi's room

Here Owen is holding "Dumbleman" or "Batmore" depending on the moment. The large Batman plastic figure that Bobbi got in the hospital was holding her Dumbledore wand that she received for her birthday last year. Laughter truly is an amazing medicine!

Everyone's glad to have Bobbi home again (again), and definitely in a better place as far as pain management and mood. Leah was her self-appointed nurse and confidante today, and hardly came out of her room. They talked together about all sorts of things...and Leah got a little bit of her home school work done, too. But honestly, knowing that Bobbi had someone in there keeping her company and distracted, and could come find us any time Bobbi needed something made the day go smoothly for everyone.

Thanks to all of you who are praying for us.

Today we got some more regular food into her, got all three rounds of her CPM machine (which moves her knee, gradually increasing from 30 degrees to start up to 90 degrees by the time the casts come off), and even got to try moving her to a prone position during an impromptu visit from her favorite physical therapist, Lori. It was really nice to have someone who knows what they're doing helping us with that first attempt at prone! Bobbi also got a mid-day visit from one of her occupational therapists who only had a half day of work. I tell you, we've got some really great people over at that therapy center!

Gearing up for night time here, and hoping for a repeat of LAST night, where all three of us (Bobbi, Mom, Dad) got some decent chunks of sleep in between meds and watching you tube videos (at Bobbi's request), to encourage some important activity...at 2:30 in the morning. Yup.

In the thick of it

The battle here is only partly physical. All of the spiritual battles that have been ebbing and flowing over the year and a half since she came home are in the forefront. Last night was a very difficult night resulting in a 911 call around 4:30am. So, I could have also titled this post, "She's home, again."

Of course, strong pain meds don't help any of that.

We're grateful for the reinforcements that came in response to an email I sent to our pastor this morning. ("We need help. Can you find someone to come over?") Matt is getting some sleep after one hour of sleep two nights ago and 15 minutes last night.

This is devoid of details, because I'm limited on time, but want to encourage all of you to keep praying that would we continue to live in gratitude to the God, our God, who has designed all of this for all of us.

ADDED: I realize that in my sleep-deprived state I failed to mention in this post that the 911 call resulted in a transport to the Emergency Department and a swap of medications. It was not a fun time.

And she's home!

Today turned out to be a much better day than the previous ones, despite only really getting one solid hour of sleep last night. She's managing all of her pain with oral meds, so the IVs were able to come out. The knee-moving machine that was so VERY uncomfortable the first time yesterday, is something that today she says puts her to sleep. That's a good thing. She has to be on the machine for 30 minutes per leg three times a day, so three hours of her day is going to be spent with it!!

All of the necessary body systems that need to be moving are moving, so late this afternoon we got the okay to bring her home. The amazing Rose (the boys' in-home care giver) had already told us she was around this weekend for a short notice shift, and true to her word showed up with about an hour's notice to help cover the kids so Matt and I could both be at the hospital for discharge. Here's Dad and one of her favorite nurses (though now that she's not in so much pain that she wishes she was dead, she likes ALL of them) getting her moved into her loaner wheelchair.

 We got her into Big Blue without any real issues (having removed one of the bench seats so she can sit with her legs out in front of her), and made it through the ride home without any break-through pain.

We've been home for three and a half hours so far, and it's been pretty much continuous care-giving! We're fully expecting that we'll get better at this quickly as the days go by, and that as her pain improves, many things will become easier.

[I'm reading back over some of this, and noticing that I've been writing nonsense, though all in a grammatically correct fashion. I've edited those sentences, but am thinking I'd better quit while I'm ahead and leave it at this!]

So, she's home. We're tired. Her mood is by far the best we've seen all week since the morning of surgery, and we'll see what the night brings! We don't plan to be sleeping too much tonight, either.

Owen and Leah coming in to say welcome home and goodnight!!

Short

Today Bobbi got her "real" casts on (smaller than the initial ones), and had a number of other firsts. The epidural is out, and pain is being addressed with fewer meds than earlier, but she's still in a lot of pain, largely because she's refusing most of the morphine until things are really rough. (She hates the way it makes her sleepy, and the kind of sleepiness that it is.) Eating and drinking are still a struggle, but they successfully pulled the catheter today, which makes her feel much more normal.

I got down to the hospital with six of the kids today for a longer visit. We saw the physical therapist who started talking through some of the things we'll need to do once she's discharged. Still no talk about whether that will be tomorrow or Sunday. Like everything at the hospital, we will just wait and see! There's no rush around there.

So, really nothing earth-shattering to report, but wanted to give you something in case you were checking. I saw the first thing that I can truly call a "smile" today, and that was when the catheter was finally out. Otherwise, it's been a pretty rough road. It hurts more than she had anticipated. Matt is sticking close by her side. We're missing him at home, but having my mom here makes it possible.

The beginning of a long road

Bobbi's physical recovery continues to progress appropriately; the biggest challenge is the mental and emotional facets of recovery. Yes, she's dealing with discomfort and flat out pain, and on top of that the altered mental state brought on by the stronger pain meds they're using at this point in the game. Many of the challenges that she deals with on a good day are obviously exacerbated during a physically and mentally stressful time like this. She's having a tough time.

Mira had an appointment with her pulmonologist at Gillette this morning, so we juggled things such that last night when I picked Rinnah and Leah up from their church stuff, I did so in the van with Mira's chair loaded up. We drove down for a late evening visit with Bobbi, and left Mira's chair outside of Bobbi's room. This morning, then, the plan was that my mom would drive Reuben and Krassi to their therapy appointments in the van, taking Rinnah (7), Evania (4) and Gloria (2.5) along with her. I would take Mira and Eben with me in the Jetta to Mira's appointment where Matt would meet us at the door with her chair. Owen (13) would come along with me (and some of his school work) so he could see Bobbi, and Leah (11) would stay home alone to work on her stuff.

All went according to plan until about 10 minutes after I'd sent Mom off with her crew and I realized that I'd forgotten to take the wedge that goes behind Mira's removable seat out of the van (well, I suppose we can improvise with a handful of towels) AND also Eben's car seat was still in the van. That's harder to improvise. So. Regroup. Thankfully he was just waking up and hungry, so instead of leaving at 9, I nursed him at 9, passed him off to Leah, and left at 9:15 with Mira and Owen for Mira's 9:30 appointment. Thankfully, again, traffic is pretty light at that time of day, and with Matt meeting us at the door, he was able to swoop her right in and still be essentially on time.

The big event of the morning is that Bobbi's loaner chair arrived, and she's been cleared to be out of her bed, so they transferred her over and Owen and I got to take her for a walk down the main hallway of Gillette.

This is by far the happiest look she's given us since coming out of surgery.

 Walking down we ran into Dad and Mira coming back from Mira's appointment, which was beautifully routine. Dad also took the opportunity to stop through the wing that Mira usually stays in when she's inpatient to say hi to some of the nurses that have cared for her, and enjoy seeing her when she's NOT sick.

 Out into the sky-way - I have so many memories of being in this sky-way with Reuben when we were here at Gillette eight years ago when his epilepsy was first diagnosed. We watched the first big snowfall of the year from that bridge eight years ago. Nothing so interesting today, except maybe the fact that every third staff person that walked across the sky bridge was someone I recognized. Phew.

Bobbi's appetite has been very poor. We're hoping it picks up soon to help her body heal. Our amazing friends, the Dunmires, who have helped us on a bi-monthly basis with [absolutely incredible] meals, stopped over tonight with a meal for us so we could have some of Bobbi's favorite things to take to her. If Matt gets a chance, he's going to stop through home tonight and pick up some of the chicken and yellow rice, green beans with almonds, and deliciously dark brownies. That would be enough to wake up anyone's appetite!

sick and sore

Bobbi had a bit of a rough night, which included more vomiting and needing to have her epidural turned completely off for a while to verify that she still had feeling in her toes, which then, in turn, means that a large part of the night and today was spent trying to get pain back under control. They were able to put the epidural meds back on after verifying that her toes do indeed still have feeling in them (yay!), but of course, it's harder to get pain back under control than it is to keep it that way in the first place.

She's a little out of it, so probably not really up for visitors today. Dad's been with her all night and day, and I'm hoping to get down there for at least a little bit sometime before the day is over.

At the end of a long day

My day started at 4:30 this morning (because being up to nurse at 2:00am doesn't really count - Eben goes back to sleep so well after his night nursing that it hardly interrupts the night.)

We got to the hospital at 6, she was under anesthesia by 7:30, and the procedures (I lost count - there were seven or eight procedures that happened today!) began at 9am. The surgeon was wrapped up and cleaned up enough to come out and talk it over with us by a little after 4pm, and we were allowed to go back to be with her in the recovery room around 6pm. That's a long day!

Eben was my buddy in the waiting room all day. He was a very patient companion, and we both enjoyed the day of snuggling with no interruptions. Dad went home to take care of everything else.

BUT, from an orthopedic standpoint, everything went very well. Her legs are now both straight, her feet able to stand flat on the floor, her knees able to both bend and go completely straight. She will be able to stand up straight!!! All of the brain-to-muscle communication challenges that come with cerebral palsy will still remain, but we know that she's got the coordination to generate a walking movement pattern, but now, the hope is, that with everything aligned properly, that she will be able to USE that ability to actually get around!

It's going to take months of rehab, and will likely trigger many mental challenges beyond the physical ones, but there is also so much hope wrapped up in today's experience. Right now she's just struggling through the nausea and vomiting that accompany that many hours under general anesthesia, but other than that, she is resting comfortably in her own hospital room.

Grandma F found a marvelous treasure at Goodwill on her way up to help us out. I don't know that Bobbi's been aware enough to notice him yet, but for those of you who know Bobbi, you know how appropriate this gift is!! 😁

We'll save post-surgery photos of Bobbi until tomorrow when her face isn't so "green" and she's enough with it to give us the "okay"!!

Surgery has begun

This is a day that Bobbi has been looking forward to since the first days after she came home. Her goal has always been to be able to walk. She has been working hard in physical therapy since getting home to strengthen her and get her as strong as possible before having this operation. This operation is the next big step in getting her closer to being able to walk.

Bobbi is currently in the OR. Here are a few pictures from this morning. However, I think the most important one is that they got her name tag corrected to be more appropriate and to Bobbi's liking. Any of you that know Bobbi will know immediately what was wrong with the first name tag!

Way too girly girl.

That is more like it!

After getting the name tag issue resolved they got on to the other less important things like going over the checklist of what they were going to be doing and putting the surgeons initials on each location where they were planning to make an incision. There were a lot of initials.

Mom and daughter getting ready to head back to the OR to put Bobbi to sleep.

Bobbi has only had one other surgery in her life when she was about 3 years old and she was dropped off at the hospital by a staff member and was on her own until they picked her up when she was ready to return to her group home. This time Bobbi had her Mom and her Dad (and Eben) with her and she will have one or the other of us or Grandma with her until it is time for her to come home.