One more anniversary

Yesterday marked four years since the girls landed on US soil and came home for the first time. In past years, we've celebrated with Bobbi's choice of dinner and dessert, but this year what she wanted to do was go shopping with me at Goodwill! :) Done.

Even without the benefit of changing rooms, she came home with two pairs of cool jeans, and four shirts, of which only ONE item needs to go back because it doesn't fit quite right! She's enjoying the benefits of having a job with regular income. 

I remember our first trip to Goodwill after she came home, during which she picked out four hoodie sweatshirts. That was a HARD shopping trip! We were still heavily dependent on google translate...and Goodwill does not have free wi-fi and we don't have data on our phones, so we were working without any assistance! She's since passed on all four of the shirts she picked out that day - the MN Vikings one because she hates football (and hated people asking her about it!) and the one from a neighboring high school (which also raised conversation-starter questions that she didn't want to field: "No, I don't go to Hastings, and don't know anyone who does!") and the green one that she loved is just a little bit too small. 

Four years with those girls. For Bobbi, she's now spent 20% of her life with her family. We've got a long way to go to even break even! But every day, month, year keeps building, and today it was fun to hear her, after we picked her up from work, say she was looking forward to spending the evening at "home sweet home." Granted, she was in a bit of a goofy mood, but it was still delightful to hear those words come out of her mouth!

We picked out ice cream in Mira's honor, so we still had a special treat. :)

Finally resting peacefully after a 2 hour run with heart rate in the 150s and two doses of valium to help her calm down

A few bits on Krassi

This guy has settled into such a great guy who I really enjoy having around the house. It's so interesting to watch him every day - he's got plans in his head, and he goes about accomplishing them! They're very different from the plans a typical 16 year old boy may have, but they're his, and he takes ownership of them and lives them out to their fullest.

Today Owen and I took him to his PT session, without any other helpers, so we were able to take Owen's truck. (Less than two weeks until Owen takes his driving test!!! Oh, how I hope hope hope he'll pass on the first try! I am SO ready to have another driver in the house!!!)

It's maybe not the best photo, but I loved having both of my teenage sons in Owen's 23 year old truck this morning!

We've had the swing up in the basement again lately, and Krassi, with his increased strength, is able to climb onto it if there's someone else on it to steady it for him as he pushes up. These two were having a blast last week when I popped down to check on things!

There are many exciting things on the horizon for Krassimir, too. He's started taking a more active role on a more regular basis in feeding himself. Currently we load up his spoon for him, modified with a special adaptive handle, and he's responsible for 3-5 of his own bites at each meal. As he's growing, a new chair for him to sit in while he eats is really going to be necessary - he's still using the one a family at our therapy center gave us when he first came home, and he's pushing the limit on size - and we're hoping to be able to get something with an eating surface so he could possibly even learn to do the scooping up of the food himself as well. I'm really excited about this. As I've written about before, when Krassi first came home, he seemed to channel all of his angst and negative emotions about his life into the single act of eating. We're hopeful that being able to take ownership of this necessary daily task with help him to view it in a different light!

While the above photo doesn't demonstrate self-feeding, it does capture a funny moment from lunch today! The thick gray handle is the one Krassi uses, but this time REUBEN wanted to help feed Krassi. Oh my! Much giggling, as Reuben accidentally bumped into Krassi's front teeth at one point, and Krassi laughed, so Reuben tried to do it again, and Krassi was laughing so hard he couldn't close his mouth to get the pudding off the spoon! Had to work hard to convince Reuben that this was NOT a good idea...and missed getting a photo of where Rose is supporting the spoon that Reuben is holding while I'm holding Reuben's elbow to help minimize the chance of bumping and Krassi is holding Reuben's wrist as a tool to self-feed. :P Quite the production! It works better when Krassi does it on his own!

Something else we're considering, though not quite sure what it looks like yet, is moving toward some degree of toilet training for Krassimir. He has much more of an awareness of his bodily functions than Reuben does, and will frequently bring us the wet wipes when his diaper is dirty, showing us that he doesn't really like it, and that's a great motivator to use other means! With the new bathroom, there's room to get him and an adult and perhaps even some sort of *thing* to help (not sure yet what that would be), and it's also possible that with our shorter toilet bowl, he may be able to use the grab bar on the side to pull up to standing, and sit sideways on the bowl where's he's got a good double grip on the bar. The logistics of all this remain to be seen - the bathroom is still a "no-no" room for him after his days of hugging Grandma's toilet so he could lick it from when she still lived in her own home when Krassi first came home. I think "Don't go in the bathroom" was one of the first rules we had for him!!! But that, too, may be a devious sort of motivator for him as well...who knows...but we'll still draw the line at licking. Bleh!

We are also increasingly seeing him using picture cards to make choices of a field of two or three with very consistently meaningful answers. We are cautiously optimistic that we may be able to reach a new level of communication with him at some point in the foreseeable future. When he first came home he demonstrated an amazing capacity for learning to understand spoken English, and that first summer, gained rather quickly the use of two ASL signs (my turn and please) which he kind of morphed into one and the same sign...and that's it. It's been surprisingly useful, but I *know* there's more in that guy! He has opinions about stuff! And we'd love to be able to hear from him proactively, and not just reactively.

So peaceful

 The surgery seems to have been a very good thing for Mira so far. Matt hasn't had to attend to her during the night once since she's come home. (For years Matt and I have had kind of a divide-and-conquer approach to the night-waking around here. In past years, when I was nursing, he was on Reuben. Recently, I'm the one who is "on" Reuben and he's on Mira. Since Reuben's night cares generally are not as taxing as Mira's, I also tackle the occasional waking from the little girls or Eben, but in general, having a pre-determined plan means that we don't have to waste time or brain power deciding whose turn it is!)

Before her surgery, her heart rate was regularly vacillating between the 70s and the 140s, all day and all night, as she would try to void and struggle. Now she is regularly in the 40s, resting more peacefully than we've seen her in a very long time. It's SO good to see her more comfortable.

Gloria's really taken an interest (starting a week or two before Mira's hospital stay) in being a nurse with Justine. The sweetest was two days ago when I came over to find Gloria teaching Ebenezer how to rub lotion on Mira's feet!

She's back home :)

 Right on schedule, Mira finished up her antibiotics and has been sent home. For a quiet little girl who doesn't do much, she sure leaves an empty space in our home when she's gone!

All ready for bed with her bi-pap machine on. Hard to believe she can't see with the "look" I caught from her in this photo!

So far so good

 Mira's surgery went well. Her surgeon commented that her bladder was very thick, which, if you think about what you know about muscles (and the bladder is muscle tissue) means that her bladder's been working much harder than it ought to for quite a while now. We *knew* that (anyone who spends as much of her day trying to pee as Mira does is working harder than is normal), but it was a nice confirmation that this was a good time for the surgery to happen.

So many things that most of us take for granted - like the ability to coordinate the squeezing of one's bladder with the releasing of one's sphincter - are just really challenging when you have the degree of neurological disconnect that Mira has.

This should make a lot of things much more restful for her...and supposedly should be fairly complication-free (a hole in your abdominal wall sounds like a great way for infection to get in, but apparently because there's a continuous, low-volume flow *out*, contamination *in* isn't a big concern.)

In the hospital

 Mira's been taking a mini-"vacation" at Gillette for the past few days. She, as usual, presents all sort of odd symptoms, and it's anyone's guess where they're coming from. This whole deal started with about two months of oddness, including emesis (the nice medical word for vomiting) three to five times a week, and severe difficulty urinating (to the point where she'd hold it for 8+ hours, and wasn't able to go unless Matt used a pressure technique that her PT taught us), and episodes where her heart rate would vacillate between the 70s and then pop up to the 140s, often connecting with needing to pee, but not being able to. We've made a successful change to her diet to help in her bowel movements (sorry for all of the joyous topics, but that's life with Mira!) and it's been a wonderful thing to see her progress in that, but these other issues are still there.

A week and a half ago, the urologist at Gillette inserted a Foley catheter, with the intention of seeing if she's just having trouble draining her bladder, and if doing so with the catheter would eliminate some of her distress. He talked at that point about a potential surgery that would bring her bladder up to her abdominal wall, and make a hole so she can bypass the whole urinary tract and just drain continuously into her diaper. If we had good results with the catheter, she may be a good candidate for the surgery. He does surgery once a month, and she could have it done as soon as the first week of February.

By Friday last week, however, her urine output was low, which shouldn't be the case for someone on a fixed diet - what goes in must come out! - unless there's a problem. So Matt and Justine (her nurse) brought her down for one of their same-day clinic appointments, and when he heard which doctor was on call, Matt told me, half joking, that she was probably going to end up admitted to the hospital. 

Sure enough, last Friday she was admitted for a 24-hour observation, which has been extended day by day as they chase different things. First of all, she has a UTI (urinary tract infection), but it's new. But it's also drug resistant, so she's got to be on IV meds to treat it properly. They also ran a bunch of labs, and found many levels (liver, gall bladder, salts, white blood cell, red blood cell) that are just a bit off one way or the other. Nothing conclusive so far.

However, they decided that the above-mentioned surgery was a good idea for Mira, even if it doesn't answer all of the questions that we have about her right now, so she's going in tomorrow morning to have that done. It should be a very simple procedure. Yes, it's surgery, but she's always done surprisingly well at handling anesthesia, so it's not a very concerning thing to have her going in for surgery, particularly because it's a really straightforward procedure with very good prospects for her. The biggest down side of the surgery is that you have to always wear a diaper. Not really an issue for Mira!

~~~

Today was the day that Reuben had his annual neurology followup in person with his neurologist. He and Mira, again, were scheduled to go in on the same day. Last year at this appointment is when Matt and Mira went home from the appointment, and Reuben and I went in patient for his g-tube insertion. This year, just Reuben and I went because Mira's already inpatient. Maybe one of these years we can get them both in and both home. :P Reuben's not doing great, but he's so much better than he was a year ago at this time.

Memories - little boys!

 This came up in my Shutterfly "remember when" today. 

Wow. Hard to believe Krassi really was that small six years ago!

Mira's down at Gillette right now getting admitted for a 24 hour observation. Maybe we'll figure out why she's been up alarming (heart rate monitor alerts us when she's over 130 or oxygen sats under 87) every few hours all day and all night for the last few weeks. We tried one thing (a Foley catheter, to see if she was just having trouble releasing her urine and was having pain from a full bladder and/or backing up into her kidneys) earlier this week, and now they're wanting to check her kidney function to see if she's actually producing urine properly. She's a mystery!

another artistic daughter!

 

Gloria drew this tonight during our live readalong of the Wingfeather Saga*. Gloria is one week away from her fifth birthday, and I get a kick out of the fact that not a single one of us is missing our belly button. Or nose. (She had to go back midway through and add a few that were missing.) Or arms. (She realized that she was missing arms. "How can I draw a picture if I don't have any arms?!" Apparently I'll have to introduce her to a broader range of artists (Joni Earikson Tada comes to mind), but this Gloria did, in fact, use arms to draw this.) I asked her how many fingers I had, and she cheerfully responded, "Three!" and continued on without a care.

To her credit, she remembered all but one of us on her own. For some reason, she just couldn't remember Owen without a reminder. Not too bad.

Just in case you can't tell who is who, here's one with labels. Gloria thinks it's funny that Leah (drawn seventh) is the biggest. :)

* The Wingfeather Saga is a fiction adventure series, and back in March when the world shut down, the author decided to do a read-aloud every night of the first book until we were out of our two week quarantine. He got through the first two books, and then promised to start again in the fall. Book three he did read to us in the fall, and then started the final book after Christmas. Most nights most of us gather around to enjoy the story, and his funny voices. It's been one of our pleasant memories of 2020.

My artistic girls

 Bobbi keeps working away at her coloring, and continues to grow in her confidence AND her ability to express pride in a job well done. 

This is her most recent project, again, colored on someone else's drawing:

I don't have the best camera, but I think the photo captures most of it - dramatic color choices, contrasts, dramatic lighting effectively rendered. Pretty neat!

She and Leah and I were chatting in Bobbi's room for a few minutes before Leah headed off to bed. We'd taken Christmas break to purge/clean/tidy the whole house (and got about a third of the way there - still better than nothing!) and in Leah's room that included purchasing herself a new bookshelf, and then discovering that she also enjoys the medium of color, just with books (and blankets) and not pencils!

She says some of the series/sets of books that she has are broken up, but she doesn't mind. :) What interesting, unique daughters I have!

And since I'm sharing artwork, here's something of Leah's that she did recently that she was pretty proud of as well. She's been developing her skills, doing a lot of drawing from a model (usually a photo of something she's found on the internet, or an old picture around the house), and this one, drawn from her own imagination, was a departure for her in that way as well. I think it's pretty effective!

They're talking now that Leah needs to draw something and then pass it on to Bobbi to color. I hope it turns into something - I think the two of them could jointly produce some pretty fantastic work!

(And I finally shortened, and posted, Mira's birthday post. Not much, but it's there if you're interested.)