Thursday, November 28, 2019
Home for the holidays
Guess who got to come home last night instead of being admitted! They want her on an antibiotic because her lungs do sound "wet" and there was enough evidence in the x-ray to warrant treatment, but she wasn't so bad that she needed to stay!
Wednesday, November 27, 2019
Busy week
1) Tsvetomira had a birthday! As of Monday, she's 14 years old. We ate ice cream with sprinkles in her honor, and sang (with one of us touching her so she could at least feel what we were singing!)
2) Matt finished the shelf that separates the opening between the living room and his office! Along with that, he was able to put in the last piece of floor trim in the living room, so the living room is finally completely done. Now all he has to do for the west addition that we began over six years ago to be finished is to do a bit of sheetrock mudding, sanding and painting on the doorway into his office. Not bad.
3) Tsvetomira qualifies for nursing-level care, and has officially been approved for up to 38 hours a week as of July, but we haven't been able to find someone, until this week! On her birthday, we had a nurse start her training. She'll come three mornings a week for about four hours just to help with Mira's morning cares in the hopes that a) Matt can get to his desk sooner and b) we can keep closer tabs on how she's doing overall and hopefully catch her declines sooner. It's a great arrangement. Her son goes to school a mile and a half from our house, so she drops him off and comes here. When school's off, she can stay home with her son as those days are generally more flexible for us anyway.
4) Bobbi, for the first time, was told by a person she had just met that they couldn't tell at all that she had an accent! It's definitely still there, though diminishing continually, but it was kind of cool for someone to be that surprised that she was born in a different country and didn't start learning English until she was 16 years old!
5) Daddy and Mira, after a six month hiatus, have made their trip together down to the ER at Regions to check out her lungs. She's such a tough call to make. Over the afternoon she just went downhill, so after pie at church tonight, they headed down. Of course, he reported that they got there and she was satting at 96% on room air, instead of the 90% or lower that we'd been seeing while she was on oxygen here at home. But they said her lungs sounded "wet" which they didn't yesterday when our nurse was here, and they'll be doing x-rays. Very probable that she'll be admitted to Gillette. But still, six months in between is a definite record for her!
6) Our friendship with Gillette began nine years and one day ago today. It was two days before Thanksgiving, 2010, when Reuben went into Gillette as a "normal" kid and on his second day had his first two really big seizures, and BOOM, just like that we had a diagnosis of epilepsy the day before Thanksgiving.
It was exactly nine years ago today that I woke in the night needing to use the bathroom (ten weeks pregnant with Rinnah), and walked to the hallway bathroom instead of risking using the in-room one and waking Reuben. It was standing outside that bathroom door that I had the revelation: I'm not afraid to adopt a child with special needs because I am already the mother of a child with special needs. I just didn't know it until today. It almost made me want to ask Matt if he wanted me to run Mira down tonight instead of him, just to walk down that same hallway on this anniversary. Never did I dream what God had in store for us, and it's humbling to look back and remember those little steps he was already taking to prepare us for this and whatever still lies ahead.
6b) Ebenezer is, within a week, the same age that Reuben was when we got Reuben's initial diagnosis. It's been an interesting anniversary this time around as we have another 16.5 month old little male human around the house - but a very different one from Reuben.
7) And tomorrow is Thanksgiving! Our church had its annual Pie and Thanksgiving night tonight, and the theme this year was Ebenezer, as in a time of remembering how God has helped us up to this day as a way of encouraging each other to trust in his continued care into the future. Fitting, I'd say!
?) I didn't mention it, but we've been without Big Blue for three weeks!!! After an original estimate of $12,000 to repair it, we found another smaller shop that could do it for less, but it would take longer as they didn't carry the parts on hand, so would have to order them piecemeal as they needed them. For a few thousand dollars in savings, we went for it. It's SO nice to have our vehicle space back as of yesterday! We were grateful that Owen has bought himself an old pick up truck that seats five, so we could at least still get to church on Sundays while down our big vehicle!
2) Matt finished the shelf that separates the opening between the living room and his office! Along with that, he was able to put in the last piece of floor trim in the living room, so the living room is finally completely done. Now all he has to do for the west addition that we began over six years ago to be finished is to do a bit of sheetrock mudding, sanding and painting on the doorway into his office. Not bad.
3) Tsvetomira qualifies for nursing-level care, and has officially been approved for up to 38 hours a week as of July, but we haven't been able to find someone, until this week! On her birthday, we had a nurse start her training. She'll come three mornings a week for about four hours just to help with Mira's morning cares in the hopes that a) Matt can get to his desk sooner and b) we can keep closer tabs on how she's doing overall and hopefully catch her declines sooner. It's a great arrangement. Her son goes to school a mile and a half from our house, so she drops him off and comes here. When school's off, she can stay home with her son as those days are generally more flexible for us anyway.
4) Bobbi, for the first time, was told by a person she had just met that they couldn't tell at all that she had an accent! It's definitely still there, though diminishing continually, but it was kind of cool for someone to be that surprised that she was born in a different country and didn't start learning English until she was 16 years old!
5) Daddy and Mira, after a six month hiatus, have made their trip together down to the ER at Regions to check out her lungs. She's such a tough call to make. Over the afternoon she just went downhill, so after pie at church tonight, they headed down. Of course, he reported that they got there and she was satting at 96% on room air, instead of the 90% or lower that we'd been seeing while she was on oxygen here at home. But they said her lungs sounded "wet" which they didn't yesterday when our nurse was here, and they'll be doing x-rays. Very probable that she'll be admitted to Gillette. But still, six months in between is a definite record for her!
6) Our friendship with Gillette began nine years and one day ago today. It was two days before Thanksgiving, 2010, when Reuben went into Gillette as a "normal" kid and on his second day had his first two really big seizures, and BOOM, just like that we had a diagnosis of epilepsy the day before Thanksgiving.
 |
| "Before" we knew anything |
 |
| "After." Still just our sweet little baby boy. |
6b) Ebenezer is, within a week, the same age that Reuben was when we got Reuben's initial diagnosis. It's been an interesting anniversary this time around as we have another 16.5 month old little male human around the house - but a very different one from Reuben.
 | ||
| We call Eben our Duplo Man because he loves to build and disassemble these towers! He's really picky about the blocks he uses - they have to all be the same size - none of the double tall or double wide make it into HIS towers!! |
?) I didn't mention it, but we've been without Big Blue for three weeks!!! After an original estimate of $12,000 to repair it, we found another smaller shop that could do it for less, but it would take longer as they didn't carry the parts on hand, so would have to order them piecemeal as they needed them. For a few thousand dollars in savings, we went for it. It's SO nice to have our vehicle space back as of yesterday! We were grateful that Owen has bought himself an old pick up truck that seats five, so we could at least still get to church on Sundays while down our big vehicle!
Thursday, November 21, 2019
Our pudgy boy.
And, no, I'm not talking about Eben, though he would sure fit the bill!
I'm talking about KRASSI!!! After a year in which he basically stayed the same (actually down a few ounces), he has, over the last three or four months, put on seven pounds!!! He's got the tiniest hint of pudge on his belly. ;)
After learning that he had not gained anything over a year, we re-evaluated how we were feeding him, and strategized ways we could get extra calories into him. For starters, we're just making sure that we're getting quantity into him at each meal. We aim for close to 2 cups of food instead of the one and a half that we'd been content with for a while. Additionally, we've added two snacks into his day - a pudding cup! - because we recognize that there are limits to how much we can increase the quantity at a single meal. His school has been really on board (which reminds me that I should share this happy news with his teacher, too!) They are responsible for the morning snack time, and they have an actual board on the wall in his classroom where every week they look at the school lunch menu and choose the items that they know Krassi prefers so that when whoever goes down to get his lunch (they puree it in the classroom), they know to, for example, avoid the green peppers. ;) We give him another pudding cup when he gets home, with a hefty tablespoon of whole milk powder in it for extra oomph, and then he's got time to digest that before supper time.
Apparently it's working.
Here's a picture his teacher sent from a few weeks ago.
Shaving cream! What fun! We can smell it on him on the days they play with it at school. ;)
I'm talking about KRASSI!!! After a year in which he basically stayed the same (actually down a few ounces), he has, over the last three or four months, put on seven pounds!!! He's got the tiniest hint of pudge on his belly. ;)
After learning that he had not gained anything over a year, we re-evaluated how we were feeding him, and strategized ways we could get extra calories into him. For starters, we're just making sure that we're getting quantity into him at each meal. We aim for close to 2 cups of food instead of the one and a half that we'd been content with for a while. Additionally, we've added two snacks into his day - a pudding cup! - because we recognize that there are limits to how much we can increase the quantity at a single meal. His school has been really on board (which reminds me that I should share this happy news with his teacher, too!) They are responsible for the morning snack time, and they have an actual board on the wall in his classroom where every week they look at the school lunch menu and choose the items that they know Krassi prefers so that when whoever goes down to get his lunch (they puree it in the classroom), they know to, for example, avoid the green peppers. ;) We give him another pudding cup when he gets home, with a hefty tablespoon of whole milk powder in it for extra oomph, and then he's got time to digest that before supper time.
Apparently it's working.
Here's a picture his teacher sent from a few weeks ago.
Friday, November 15, 2019
Snow record
A little picture of life around here:
From left to right...
Wheelchair track up the driveway (courtesy of Krassi coming home on the school bus)
Baby Blue track down the driveway (courtesy of Dad and Mira for a dental appointment)
Fat tire bike up the driveway (courtesy of Owen biking home from his morning at the high school - he's still home schooled in the afternoon. He usually comes up the driveway on the back tire only!)
Footprints up and down the driveway (courtesy of Mom going to get the boys off the bus, and the FedEx guy dropping a package at the front door)
The only thing missing is cat prints!
Wheelchair track up the driveway (courtesy of Krassi coming home on the school bus)
Baby Blue track down the driveway (courtesy of Dad and Mira for a dental appointment)
Fat tire bike up the driveway (courtesy of Owen biking home from his morning at the high school - he's still home schooled in the afternoon. He usually comes up the driveway on the back tire only!)
Footprints up and down the driveway (courtesy of Mom going to get the boys off the bus, and the FedEx guy dropping a package at the front door)
The only thing missing is cat prints!
Thursday, November 14, 2019
Last Sunday
So, off she went, and about halfway through her stay, I posted this.
Soon after, she started building up her music again, with this as the first song:
It's been quite a ride since then, and we anticipate it will continue to be so, but it's now nearly a year later, and this remains the focus of most of her days. She's spent a good deal of time talking with us and with her pastor before deciding to take the step of being baptized - she has many doubts, primarily about herself, but decided it was right for her to act in obedience to Jesus by being baptized and publicly declaring in front of the church congregation that she has chosen a life of trusting and following Jesus.
I realize this is a bit much to mush something that we're almost a year into now into one short little post, but that's the way it's got to come if it's going to come this week before those pictures are a month (or more!) old!
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