Another hospital run

Soooo, Mira and Dad are down at Regions ER just checking things out. It was a slow decision (as in, not the sort of emergency where you have to get right there right now. We spent all day hemming and hawing), but we're glad she's there. They've got her on oxygen and put in an IV for blood draws. Still don't know if they'll admit her or send her home, but it's where we are now, so instead of me finally finishing the (short and rather truncated) post I almost had almost ready to go, it will wait once more, and you get this instead.

Just got a text from Matt and it sounds like they want to admit her to Gillette.

Walking update

This is a post simply to attempt to satisfy many of you who want to know how Bobbi's walking is coming along! No real writing, just a bit commentary on the videos.

The pool is amazing. When you're up to your armpits in water, you only weigh about 20% of your normal weight, AND have the benefit of the water itself slowing down the effects of gravity. It's ideal for learning. Bobbi's therapist said to me once (when she was working in the pool with Krassi) that every child that she's gotten walking independently in the pool she has also been able to help do at least some independent walking on land. Krassi didn't get to the point. Bogomila, however, appears to be in the other category:



Bobbi gets down to the treadmill almost every day that she doesn't have physical therapy. I took this video a little over a week ago. She walks at .6 mph, which is the slowest the treadmill goes. This summer, that was too fast for her. She's since worked herself up to 5, 10, and sometimes even 15 or 20 minutes at a time. Since this video was taken, she's been pushing herself, and usually walking at .8 mph, and twice now pushing for all she's worth at 1.0 mph! That's a big increase! Her time isn't as long (yet) at those speeds, but it's exciting to see her strength and endurance increasing, and her comfort level with the motor planning involved in walking becoming more natural.



She does therapy in the pool once a week, and twice a week on land at the therapy center (also known as my second home.) They do a wide range of things there: lots of stretching, muscle isolation (she can now make tiny wiggles with the toes on her right foot!!!) and a variety of strengthening and balancing exercises.

The following are a few from today. I was especially proud of the one where she takes a few steps with minimal support from Lori and sits down in her chair.

So proud

Krassi wowed me tonight with this:

I realize it's a little hard to see in the photo, but that's HIS OWN hand holding the bear cup for drinking!!! We'd been playing/working for a few minutes with a trial augmented speech device for him that is either touch activated OR eye-gaze activated, and are beginning with a field of two choices, both intended to be rewarding to build the cause and effect in his mind. Tonight's options were drink and jello. I was anticipating jello every time, but after the first bite, he told me drink (with his hand). So I gave him the drink, not sure if that's what he really wanted, and not only did he drink it, but he took it from me and tried to put it back in by himself when I was done!

He needed a bit of guidance from me, but he DID IT!!!

Doesn't he look like such a big boy taking care of feeding himself!

It's a major deal for a boy who came home four years ago channeling all of his angst and anxiety and anger into his mealtimes. Just getting him to accept being fed without a major breakdown was a big deal at the beginning. The last months have moved to a much wider variety of textures, including larger soft chunks of things in his food that he's able to chew and manage safely with his tongue. Seeing him giving himself a drink tonight was pretty delightful. Even his older sister was excited and proud of him!

[As a side note there, one thing I've admired about Bogomila is that from the start, she has an intense loyalty to her family. Yes, there are some who annoy her more than others, but she has a definite sense of solidarity with her brothers and sisters, and seems to have a unique connection and almost sense of camaraderie with Krassimir and Mira because of the shared elements of their history, and her sensitivity toward them, and her ability to see them as precious persons with feelings and rights and value is really beautiful.]

Seventy-one

Bobbi's birthday is today!!! Her first birthday home with her family. Although there was some Bulgaria-sickness, the day was in general a great success, including some fun messages via Facebook from some of the people she misses the most from her old home.

We started with special breakfast cereal (chocolate bunnies), and a few presents from family members, then shared brownies with her therapists (Lori's birthday is tomorrow!) and spent the afternoon baking cakes in preparation for her big party tomorrow.

Way back when we first met her, we'd talked about restaurants, and told her we don't really go out to eat much, but that sometimes for birthdays or something special like that we will, so she was all ready to go out tonight.

There's a pretty decent Mexican restaurant very close to our house. Rinnah left today (with my mom) to visit my sister and family in England, so we sent Owen on his bike, and the rest of us fit in Bigger Blue. Amazingly, we had a relatively peaceful dinner! The photos aren't so great, but you can see all of us...

 ...AND, the fancy birthday hat they brought with Bobbi's complimentary dessert and Happy Birthday song!

(And where did the title of this post come from? Well, it's Bobbi's way of dealing with the repeated question from Matt's mom: Oh, it's your birthday? Well, how old are you? Bobbi: Fifty-five. or Fifty-eight. or Eighty-nine. or One hundred twenty. but her favorite was Seventy-one. Close to seventeen, but just different enough to make the repetition something humorous, and thus tolerable. We're so proud of the way she is learning patience!)

Sick boy

Reuben's got quite the nurse! That little hand just didn't move from the top of his head.

A long (translate: low-priority because he's not THAT sick) visit to our Children's ER yesterday got us a diagnosis of pneumonia for Reuben. Hopefully that means our little guy who's been mostly sleeping since Saturday will start to feel better tomorrow after his antibiotics start working!

Making Big Blue bigger

So, a number of weeks ago we went to check out a bigger used Sprinter, because there are times when it is fairly limiting to not be able to take all of us and all of the wheelchairs in one vehicle. We liked many things about the vehicle, but it's also REALLY big, and not nearly as cute as our Big Blue. (It was white.)

Once again, God provides what we need in really odd ways. We don't do loans, which means if we don't have the cash on hand to buy something, we don't buy it. Remember that money we lent to a friend over the summer from our savings for bathroom? That money is enough to pay for the new van. BUT, for a variety of reasons, there's been a pause on the repayment of that loan (still going to happen, just not yet), so we don't have that money on hand.

So we didn't get that van, and are back to just Big Blue. But, the thought processes involved in the test driving of the white van led us down another, more cost-effective route.

Behold: Bigger Blue.

We purchased a new salvaged 4-bank of seats to replace our current back row of three seats, giving us one extra seat, and we plan to install a new bracket in the floor so we can take the middle row (a two-seater) out, and put our narrow 3-seater in there at times when we travel, and the old back row of three into the front, and make Big Blue into a 12-passenger van! That's just enough for the eleven of us, since Mira takes up two seats. We're currently looking for a trailer for the wheelchairs (because we can only fit two at a time in the back of Big Blue, and because if we're actually going on a trip, there's going to be *something* that would be nice to pack into a trailer!)

And, BAM! Bigger Blue at a fraction of the cost of another vehicle.

4 years ago today...