Orthopedic surgeon

This morning was Bobbi's big first meeting with Dr. H., the orthopedic surgeon that we've been waiting for quite a while now to see to talk about the potential of major surgery to give Bobbi the chance to be significantly more independent in her mobility. Very interesting meeting, and useful. While we were hoping that this meeting would also give us some idea of the timing of Bobbi's surgery, that did NOT end up being something on the agenda yet at this point.

How far do those legs rotate anyway?

What we did come away with is a plan of action for our next step (getting Bobbi to the point where she can walk in a straight line in a walker so she can be evaluated at Gillette's gait lab), and a few other simpler information-gathering (mostly imaging.) Most encouraging to Bobbi, was that he didn't even for a moment entertain the option of not going ahead with surgery. His questions were more related to what she is hoping to accomplish, and how to best get the most information ahead of time so as to make the most effective use of the surgery. Bobbi has been so set for so long (nearly the last year, I think!) on having surgery this summer that we were very proud of the calm way with which she took the news that it will most likely be later than this summer that the actual surgery happens. I think she was just so relieved that he said it really was an option for her that it helped to diminish her disappointment about timing!

One of the more interesting things to me, and in an odd way, a very hopeful one, is what Dr. H. told us about hip rotation in the socket at birth. We all start out with our hips joints at about 45 degrees (relative to what, I'm not sure). As we do weight bearing and start walking, the joints naturally rotate during the first three years of life down to about 10-15 degrees. Bobbi, who did not do any of that in her first three years, has one hip that is still at 45 degrees, and one (the worse leg), that has been pulled to 60 degrees from a combination of off-kilter muscle signals from the cerebral palsy, and then positioning that was thus more comfortable for her. This was exciting to me, because I'd thought all of the rotation had come from muscles pulling, and I was concerned about the degree of pulling that she would have to continue to fight against after the surgery. Knowing that most of the wrong rotation is more a matter of never getting properly rotated in those early years, and less a matter of muscles makes me more optimistic about the potential for the long term viability of the effects of the surgery.

It also makes the timing of Bobbi's surgery less of a complication for the summer. The bathroom project (which, by the way, took a bit step toward reality this weekend as Matt finally got a very rough set of drawings completed, so it's off for a few of the bids that we need!) can be completed, and fully completed, before her surgery. Baby's arrival will not happen right in the middle of the time that we'd be aiming for surgery, but Baby will not be a brand-newborn when it happens. And depending on a variety of factors, we're considering pushing the garage out until next year (though part of me is still hoping that something amazing would happen that would make us think it would still be good to do this year, as the thought of another winter with our 10 square foot mudroom and no wheelchair ramp is a little daunting!) but the wonderful thing about living life on Someone else's timeline is that we just keep walking ahead toward what we think needs to happen trusting that He will make it clear to us, when we need it to be clear to us, what the next step will be, and WHEN it will be.

Here's what ten square feet of mudroom looks like! That person on the left? He's teetering on the edge of the stairs down to the basement.

A Sunday morning adventure

Sunday mornings are always an interesting rush as, unlike other mornings when those of us who leave do it one at a time, Sundays are the one day of the week when we all need to be out of the house at the same time. To complicate things slightly, Matt leads one of the adult Sunday School classes at our church, so it's kind of important to not only get there, but to be there on time.

We have quite a system, which involves one of us (whoever's turn it is to shower for the day) getting up early and making sure Grandma gets going on her bath. Once that's done the rest of the household is usually up and moving, and all of the diaper changing (four of them), and dressing (five need at least some, if not complete, help to dress themselves) and breakfasting happens. Mira, Reuben, and Grandma need their morning meds, and Mira's feed needs to be mixed for the day so she can have it running on the pump while we're at church.

Owen's job is to mix up the batter for our yeast-risen waffles that we have for lunch every Sunday (it sits on the counter to rise while we're gone), and then he usually bikes the three miles to church. Bobbi chooses to stay home on Sunday mornings, and some weeks we set out something she can do to help get a head start on Sunday supper (usually chili - she opens cans of beans and tomatoes and mixes them with the spices that she measures out - or sometimes just cutting up a pile of veggies for soup) while we're gone. Once we get to about 8:30 we start sending the kids who are dressed and ready out to the van with help from Leah who can get the ones who need help with shoes and seat belts get all set. Then Matt or I carries Krassi out, loads the diaper bags and carries those out, then we together lift Mira, who is hopefully by this time in her wheelchair, down the two steps into our "mudroom" (a basement stair landing about 10 square feet in area) and get her into the van while the other one of us checks to make sure that we have the right combinations of wheelchairs in the back.

Most mornings there's at least one child who needs a diaper change right as we're getting ready to leave, and today was no exception. On one of my trips out the door I heard Matt comment, "Well, here we are five minutes after we wanted to be leaving and I'm just starting a big dirty diaper change on Mira!" Which, of course, gives me a few moments to make sure that everyone's hair is really brushed, and no one has breakfast on their face anymore, and to give Reuben a dose of his seizure rescue med since the little drop seizures he'd been having every few minutes for the last hour or two just weren't stopping on their own. Matt sent a quick text to a friend of ours who is in our class asking him to get everyone started reading the section of John that we're in today since we won't be there right at nine. Finally we're set and ready and out the door for the short ride to church.

A few minutes later we're in the parking lot and unloading - also a relatively streamlined process. Leah grabs Owen's Bible which we bring for him so he doesn't need a backpack. Rinnah waits for Krassimir because she knows how to use the lift to get him to the basement classroom they attend together with Reuben. Leah gets Gloria out of her seat; Evania does her own, and Leah walks in with the two little girls and Reuben. We help Grandma climb down safely, and Daddy finishes getting Mira into her wheelchair, and in we go. On this particular morning, I dropped the two littlest girls off at their class and then walked Reuben down to his myself (usually he follows Rinnah and Krassi) because I wanted to talk with his teacher about the seizures. (We are so grateful for an older lady in our church who has volunteered every week for the last three years to serve as a para in the boys' class! Mrs. B has been their summer school para for a few years, too, and after meeting the boys, and recognizing that she went to our church, offered to give her Sunday mornings to the boys in the hour before the church service!! This has been such a wonderful help to us.)

I finally made it up to Matt's class and began braiding Mira's hair (something that didn't get done before we left! But because she always sits with us in our class, it works.) Once that was done, I sat down at my spot and finally noticed that Matt was still wearing his coat. A moment later, I realized why he was still wearing his coat. Peeking out from the zipper was nothing more than his old, white, undershirt! Recognize here, that we don't have very high standards for under clothing around here, so even saying "white" is a bit of an overstatement. And I know what nobody else knows is that not a single one of his undershirts doesn't have a hole...or four...or paint...or...something...somewhere on it. But that doesn't matter when it's under a real presentable shirt. Which it wasn't this morning!

So, not too bad. We were only a few minutes late. Everyone's faces and bottoms were clean, I'd had time to put braids in three of the girls' hair...we had just completely spaced on making sure Matt was fully and properly clothed. 😏 Oh well. There's always next week.

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.

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...

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.

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...

...in 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!