Monday, March 19, 2018

Influenza A

Well, after I posted, the cough started, and by Sunday morning we knew we had to take her in and get tested. She's positive for influenza A, and was early enough to start on Tamaflu...and Mira will, too, as a preventative measure.

Sunday was another miserable day for Bobbi, but today she was better enough that she was listening to music again, did about an hour of her home work with me, and was well enough to comment that there were nice sides to being sick!
She's sticking to her room, partly because her energy levels for moving around are still pretty low, and partly a self-quarantine to avoid exposure to others. (Only some of us have gotten the flu shot...and she was one of them!) She was well enough to sit in her chair today and not just lay in bed, so we pulled a huge bib over her (my mom makes these and calls them "man-bibs"!! My uncle wears one over his suit when he's eating in the car while driving to meetings...), and made a make shift lap table with some silicone hot pads under a cookie sheet so she could eat soup without making a mess. I think she was having fun with it. ;)

I think back to the first time Krassimir was really sick a few months after coming home. That was the first time he let us hold him for any period of time without sobbing, desperate to get away. It's a little different for Bobbi who's been able to form a quite close relationship with both of us much more quickly than we had been preparing ourselves for, but we've left one of our phones with her during these nights so she can get to us if she needs help (because her room is just far enough away that we can't hear her if she just calls for us with her voice). The first night, even when she was so crazy sick and weak with the fever, she kept saying she didn't want to wake us up. Dad and I both insisted that this is what parents DO when their kids are sick. They want to be able to help them, and it's worth losing sleep over! And both of the last two nights she did decide to give us a call in the night - for more Tylenol, and to check her temperature. I'm not sure it's resulting in the same dramatic bonding experience it was with Krassimir, but we'll take any chance to stick one more little "note" of sorts into the "you're worth something!" pocket of her brain, and there's nothing like coming down at 3am without complaining to do that.

Saturday, March 17, 2018

Bobbi's turn to be sick

So far it's just a fever and fatigue, without the other symptoms that would make you think "flu", but it's the sickest that girl's been since she came home. I can tell she's really not feeling well for two reasons. One, she's let me call her "honey" twice today without saying anything (she's not the "sweetie/honey" kind of girl!) and two, she doesn't even want to listen to her music! I'm just not used to that room being quiet when she's home...

Wednesday, March 14, 2018

Those curls

Baths really bring out the curl on this girl! Her hair is so pretty! We're still not quite sure what the best cut is going to be for her that works with bed-head and wheel-chair-head-rest-head, so we just haven't cut it at all since she came home. Some stages are better than others, but right now it's at a really nice place. I've taken to french braiding sides about 1/3 of the way back, and it keeps the hair out of her face, and still leaves the fullness in the back that visually balances out her very small skull.

Sweet, beautiful, peaceful girl.

Saturday, March 3, 2018

Just so we don't get bored

Sometimes when people ask how it's going, or how I do it and I just don't feel up to the full answer, I divert a little bit with something along the lines of, "Well, with nine children, I'm never bored!"

Looks like that's not going to be a problem this summer, either. Anyone been wondering why my posts have been fewer and farther between for the last few months? Well, wonder no longer. My free times in the evening have been full (sometimes just brain full!), and getting it down on virtual paper in blog form just hasn't made it to the top of the list.

Here's what's lining up for the upcoming months. The order and logistics of some of the pieces are still rather hazy, so while I'll attempt to set this out in a meaningful manner, I make no guarantees!

Remember that bathroom? You know, the one that's big enough to get a wheelchair into, and would allow Bobbi the ability to bathe independently (I still lift her in and out of the tub every day for her bath, and help her to dry and dress afterwards because there just simply isn't enough maneuvering room for her to do it alone in our current tiny bathroom), and give us a private place for diaper changes for Mira and the boys as they approach puberty and eventually, adulthood. This bathroom has been on the "hopefully sooner rather than later" agenda for around a year now. We've been setting aside funding for it both through our own savings as we are able and through allocating what we can of the annual county grant funding our four with disabilities receive (though we can't actually access those funds until we have an approved plan), but the biggest reason we're thinking it's got to happen in the near future, regardless of not quite having all of our ducks in a row for the funding and other logistics of it is that...

...we're going to welcome Baby (number 10 (in the family)? number 7 (that actually arrived as a "baby")? how do you count?) somewhere in mid-July! We learned I was pregnant a few days after Mira was first admitted to the hospital back in November, so not only was I essentially single-parenting the other eight children while Matt spent time in the hospital with Mira, I was also dealing with the bleh of morning sickness, and the crazy fatigue that comes in that first trimester while trying to make Bobbi's first Thanksgiving and Christmas have something of a sense of what our family normally does on those holidays!

Putting up the tree the day after Thanksgiving is a Big Deal to our kids. But Daddy was at the hospital, and I'm just barely strong enough to help Dad get the box with the tree in it up from the crawl space. So we adapted by having the kids haul it up branch by branch, and Owen commandeered the assembly process while I sat around and didn't throw up.

It took me until a full fifteen weeks before I finally started really feeling better and getting past wanting to go to bed at 8pm every night. I'm just a few days past 20 weeks now, so am in that delightful middle where I actually have some time to think about collecting thoughts instead of just surviving until bedtime! Which is good, because... a few weeks here we're set to meet with the orthopedic surgeon who will be the one to do Bobbi's surgery that we've been planning loosely for this summer. ("We" here being obviously us and Bobbi, but also her rehab/cp doctor at Gillette and her physical therapist.) The surgery is a pretty major deal, requiring six weeks of immobilization after the surgery and then pretty intense rehabilitation therapy in the weeks after that. Adding a newborn smack in the middle of the summer will be an interesting factor in when we plan to have the surgery! (Having a more accessible bathroom by that time would also be a big benefit!)

Which brings me to the last thing, which in an odd way is so distant right now, seemingly, because of everything that has to happen before that time. But in an interesting twist of events the evening after Matt and I counseled a client of ours [for our residential design business] that they might save money by tearing down their very old and already very modified garage and building a new one from scratch rather than trying to scab on (again) to the existing we turned our thoughts to our own garage which was going to need some noticeable modification to get our plan of ramping up and out of it for wheelchair access to the house (part of the new bathroom mentioned above) to work. Additionally, that garage is slowly sinking in the south-east corner because it was built on less than ideal footings, and we know that its life is limited. Is it really worth tearing up and re-building/re-structuring part of it to get a ramp and access that still leaves us without a real mudroom space, only to have to rebuild the whole thing in the next five to ten years anyway? We always tell our clients it's much more cost effective to explore your options on paper before starting anything so you don't make decisions you will regret later. So now we're finding ourselves faced with the same question: would we be better off, and more cost effective in the long run to tear the whole garage off, salvage what we can of the materials, and build a new one that has a ramp designed into it, space to park our big vehicle IN the garage (especially nice in the winter and rain when we need to make multiple trips with little people back and forth), and incorporate space for a mudroom where we'd have room to hang our coats, and put wheelchairs?

Why not, right?

Well, because, when you stop to think about it, we're already not bored as it is, so what in the world are we *thinking* adding more excitement to our lives? I have to admit there's more than a little apprehension about all that these upcoming months are shaping up to bring. I'm grateful for a friend who stopped over unexpectedly yesterday (she lives 40 minutes away, but was on our side of town for something and popped in) and counseled me to remember all the things that God has carried us through in the past, and our confidence that when we follow him he will supply all of our needs.

However, and I told her this, I also know that the ways he does that are not usually easy or comfortable ways, and I fully expect this summer to play out that way as well. I'm also reminded of summers like the one we had two years ago that was filled with so many unexpected delights. Looking back at the words I had after that beautiful day are an odd sort of encouragement for looking forward to this summer:
Just like we give different gifts to each of our own children, he gives just the right gifts to delight each of his children, just like he brings just the right trials to each of his children.
So we are sitting here expectantly. Expecting Baby (yay!), expecting to be stretched (ouch!) and expecting to see God working (and when that's going on, there's no room to be bored.) There are many variables here, and I'll try to keep you up to date on how things are developing as I have time!

Tuesday, February 27, 2018

There and back again...

Mira's last hospital stay was so short and boring that I didn't have time to post about it before she got home! Friday she was coughing pretty hard, but all of her readings were good. Saturday, however, her oxygen sats were dropping lower than is really okay, so we took another pre-planned trip to the ER (oh, is that a wonderful arrangement! We call Gillette and talk with the nurses there; they tell us if they think we should go to the ER, and if so, we tell them what time we think we'll get there, and they give the ER a heads up so there's no waiting, and no guessing - just right to work on the issue at hand.) She was not "admitted" but stayed two nights under "observation." They gave her a little bit of blow-by oxygen the first day, and upped some of her variable medications (mostly nebulized ones for opening airways) and then sent her home yesterday/Monday!

Very nice.

There's a couple from our church who love to cook (and are very good at it!) who periodically approach me with two options for dates and two or three menu options, and we settle on one and put it on the calendar usually weeks in advance. Once again, it's such a confirmation of God's care for us even in the little details. That was a crazy day - with Matt and I meeting with clients for over two hours in the morning, then Matt running Bobbi to therapy, and after returning home going right to the hospital to pick up Mira. And I knew ahead of time that dinner was totally covered.

These reminders are so good as we look ahead. I'm working on a post looking at what's coming up this year. Phew.

Friday, February 9, 2018

50 pounds

Our Master Stacker broke 50 pounds! I know I haven't posted much about Krassimir over the past year, but he keeps on growing and developing - probably his biggest skill over this past year is a marked increase in his ability to wheel himself in his wheelchair. It's still not his preferred way to get around, but it's neat to see him gaining some independence. Our hope is that as he grows older he'll be able to spend more of his free time happily in his chair instead of only on the floor.

These days, though, he's very happy scooting around the house on the floor, and one of his favorite pass-times is collecting random items he finds on the floor and stacking them up...then dragging his creations around with him as he moves from room to room.

And, for the boy who was only 22 pounds as an eight year old, and with whom we had to fight for every ounce he gained at the beginning, hitting fifty is pretty exciting.

Monday, February 5, 2018


This is a topic that is so pathetic in its inability to give any sort of real update, but hopefully it serves to prove that we're still alive around here!

Bogomila decided over Christmas break that she was ready to try out a few classes at the public high school in addition to home schooling. She had a variety of reasons for doing so, but we were very supportive of her decision. In a three-week flurry we had a meeting with the team that would be working with her, chose classes, reorganized her private therapy schedule, and then had a snow day (which ended up costing two school days) at the end of the last quarter that pushed the much-anticipated start date back by a day because they had to use what was supposed to be the first day of the new term for finals!
Yes, we live in Minnesota.
So, last Tuesday was her first day, which she describes as a nervous day. Wednesday was "boring" and Thursday appeared to be a fine day, but homework as a little overwhelming to her that night. (We're working with her teachers to find the right balance of work taking into account her language limitations, and they've been very helpful!)

She's taking three classes, starting second hour (so doesn't have to get there until 9am, which greatly helps our morning routine which already involves getting Reuben up and ready for the bus by 7:15, Krassi by 8:20, and all of Mira's morning cares, in addition to a variety of other little people), and gets done about noon. She's taking an Intro to Foods class, an ESL English class, and one that she chose because it sounded "boring, but useful" called "On Your Own," which teaches goal setting and independent living skills. At home we're still doing math, history, a variety of odds and ends, and practicing English in a variety of ways as well.

Tonight she came home with a homework assignment for her foods class.

The recipe was simple, but that meant she could do all of the reading herself, even with her still somewhat limited English reading skills, and, since a smoothie that serves four doesn't go very far around here, she also got to practice her math skills by doubling it.
She figures she can go to school tomorrow and tell her teacher that her family ate her homework. 😋