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.

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.

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.

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.

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!

Introducing Baby Blue

After Little Blue (our Jetta) decided to run away from home (detailed here), we've been slightly more actively pursuing a new (to us) vehicle of some sort. We've for a long while talked about someday replacing Little Blue with a minivan - you know, a small vehicle for when we have just a few kids with us, but big enough that we can bring a wheelchair. We're particularly thinking about the frequent trips that we need to take to medical appointments with Mira - we can disassemble Bobbi's chair and get it into the Jetta, and with a little more difficulty, can also get Krassi's in there, but we just can't do it with Mira's behemoth. A minivan with stow-n-go seats seemed like the best way to go.

With Andrea's mom in town to watch the kids (in time for Thanksgiving, but primarily here to help us next week when Bobbi goes back in to stay at Gillette for one to two weeks of intense physical rehab), Matt and I took Saturday afternoon to scoot out together (!) with Eben to check out a few used vehicles we'd seen on the internet.

Turns out the winner when we put together the combination of miles and price, was a fully loaded, pale blue colored 2013 model. We made the purchase and drove it home yesterday. The funny thing about purchasing used vehicles is that a family like ours can end up with a vehicle with all the trimmings...including a heated steering wheel! (I don't think I even knew things like that existed!!)

But the best part of all is the name - Matt himself christened this one: Baby Blue. Very fitting. Big Blue and Baby Blue - what ends up happening to Little Blue is still up in the air, but we've got some ideas rolling around. (Ha ha!! We're just glad Little Blue hasn't been doing any more rolling around without prior authorization!)

Another teenager in the house!

We're up to four now - if I've done the math right, we'll only ever max out at five teenagers at once in the house in 2020 when Leah turns thirteen months before Bobbi turns twenty. But at the moment, it's Mira's turn to enter the ranks!

Last year we baked a cake and sang for Tsvetomira at Bobbi's big birthday party. This year we did something different - it was her sisters' idea to have a "spa day" for Mira with the help of their friend, Hope. The girls spent the first part of the afternoon getting everything ready:

They picked out a "new" shirt (from the boxes of hand me downs upstairs) for Mira to wear, wheeled her in, and the work began...

The slightly apprehensive look is appropriate here, though she's completely unaware of what's happening, and it's just a coincidence of the moment the camera captured.

Everyone was involved: Gloria and Evania worked with scented lotions, massaging her hands and up past her elbows, Leah was on her hair, and Hope and Rinnah worked on her fingernails.

Finishing touches with some face paint (a starry night sky), and an elegant indigo colored flower barrette, and the experience was complete.

Tomorrow (Mira's actual birthday), we'll eat ice cream after supper in her honor. She will, again, be completely unaware of any of the activity in her silent, dark, world, but we will choose to celebrate her life, and be grateful that, unlike last year, this year she gets to celebrate it at home with her family!

The third set of casts

There's so much I should have been putting up here, but it may never happen. So, with that said, here's an update from today's visit with Dr. Healy (the orthopedic surgeon) during which they removed the second set of casts, took new x-rays, and put a third set of casts on.

Wait a minute, some of you may say. Wasn't she supposed to be in casts for six weeks and then start full-out rehab? Well, yes, but everyone's bodies heal differently, and as an eighteen year old instead of an eight year old, she heals more like an adult, so today, at two days past six weeks, she got a new set of casts to wear for another week and a half instead of full freedom.

There's a lot of metal in there!!

BUT, she did get clearance to begin weight bearing at her weekly physical therapy appointment tomorrow.

Bobbi with her Doctor.

As a side note, we have a delightful (to me, as the mom) new situation in the house wherein Bobbi has been appointed (self-appointed, with our approval) as Owen's "Vegetable Mother." I now no longer have the job of making sure he eats his vegetables at supper time, and she's got higher expectations than I do! Overall, Owen takes it better from her than from me. And that little bit is part of why this is worthy of the blog (besides the fact that I don't want to forget it myself!) Adoption has a funny way of putting a family together in a new way, and of introducing a dynamic that on some occasions works for the better of parties who never knew they were going to benefit. For Owen, having an older sister that he has NOT grown up under provides a sort of freshness that he responds well to. For Bobbi, she has the chance to be a big sister! and provide the coaching that he needs, knowing that she's really doing something good for him. I'm hoping for good things to come of this, not the least of which is more vegetables inside of Owen! I should mention, too, that Bobbi is realizing the importance of practicing what she preaches, and on the first night of this new venture when I had served something that none of the kids really liked, she had started the meal by pushing to the side of her plate the parts that she didn't like and didn't want to eat, but after encouraging Owen to take a real bite of his, she followed that up with eating everything that was on her plate as well as asking for a small glass of milk (which she hates to drink, so she just drinks water), and drank that, too, to show him that he could also get down something he didn't like!

Insulation

Matt's days to work on the bathroom are few and far between. We passed our inspection on plumbing and electrical rough in, so last week he had a day when he put in the insulation and vapor barrier in both the crawl space and the main part. The rims are still uninsulated (Matt's not quite sure how he wants to tackle those - loose batts with vapor barrier? faced batts? spray foam? All of them have their challenges as you have to work around all of the penetrations that happen at the rim with water supply, in-floor heat, etc. But he hasn't had time to do anything about them yet anyway, so it's not a big deal...yet.)