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.

"Before" we knew anything

"After." Still just our sweet little baby boy.

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.

 

 

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!!

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!

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. ;)

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!

Last Sunday

These photos were taken at church last Sunday. This day has been a while in the coming, beginning with Bobbi's inpatient rehab stay at Gillette last November and December. She surprised us (greatly!) by telling us when she was packing to go to the hospital that she did NOT want her music, but wanted instead the Bible that our Bulgarian friend Silvana had purchased for her over a year ago. Any of you who know ANYTHING about Bobbi know that she'd rather go without breathing than be without her music. Her music is her life.

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!

Bulgaria photos

I just realized that I had "Bulgaria in photos #2" nearly finished...but not posted, so I figured I'd publish it tonight. I'll probably need to make a #3 in order to get the rest of them at some point, but since I had all of this work already done, there was no need for it to sit as a draft. I adjusted the publish date so it stays in order, so here's the link back:

Bulgaria photos #2

Mister Potter

There has been a request for photos. Particularly of the cat, of all things. 😊

So I'll oblige, but with the caveat that photos only capture moments, and I, as the author, am the one in charge of choosing which moments are shared. This last year has been filled with so many weighty issues that just don't belong in a public place like a blog because they involve people other than me who don't need their intimate struggles displayed for anyone to see. It seems deceptive to post sunny, happy photos not because we haven't had many, many sunny, happy moments and days and weeks throughout recent times, but because those have been so punctuated by the other side as well, and those other sides first of all don't photograph well, and secondly, aren't things I am free to write about.

So, if you'll promise not to look at these photos and marvel at what a wonderful, story-book life we have, you may continue reading! (A wonderful life, yes. Story-book, no. Just had to be clear on that. A life lived in the light of God's glory is always going to be a life full-of-wonder.)

[Ahem] Mister Potter, as he turned out to be at his second vet appointment (so much for telling Bobbi she could pick any kitten she wanted as long as it was a girl! We thought the kitten was a girl!!), is now Tsvetan Brian Potter, and is a pretty awesome cat. He's grown a ton, though doesn't look quite as big in real life as he does in the photo!

Bobbi continues to get out almost every day to walk in her walker on the path in front of our house. She's so steady that we can get her set up, and then she's off all on her own until she's ready to get back into her chair and come up the driveway. She's getting faster, too. What was taking her almost an hour at the beginning of the summer is now completed in about 40 minutes. To get more distance she'll either have to back track or learn how to cross the street to get to the next block. (It's a little more of a slope down at the corner than she's quite ready for yet. The crossing itself she can handle.)

As we were heading out to Bulgarian dance class today, we waved to Bobbi and she flagged us down to get help from Leah with changing the song on her iPad.

Ebenezer is walking! About two months ago he had his surgery to open up his tear ducts, which went really well. This week he has both his pre-op and one final visit with the surgeon to prepare for the bigger surgery where he'll go in shorten/lengthen the muscles in his eye so the two eyes align with each other. Eben was born four days after Reuben's birthday, so his age this fall is exactly the same age that Reuben was in the fall nine years ago when he was still (so far as we knew) our "ordinary" third child. The days leading up to Thanksgiving are always kind of emotional for me as it flashes me back to when Reuben's epilepsy was first diagnosed the day before Thanksgiving 2010. For the last six weeks or so, watching Eben, the first baby boy I've had since Reuben, I keep catching and twisting up inside as I relive in a totally different way those glorious fall days when Reuben's seizures had started (September 2010), but they were mild enough that we hadn't put together that anything was truly out of the ordinary yet. I'm anticipating being quite emotional when this little boy has to be put under for his eye procedure so close to the anniversary of when our grand entry into the life of the medical world and special needs started nine years ago. Same time of year, same age baby boy.

Krassimir has enjoyed some great fall weather. Today when I asked him if he wanted to go outside, he gave me one decisive, resounding thump on his chest (ASL for "I want!") We found a pretty awesome piece of styrofoam in the garage for him to scratch on. Good day!

Reuben's been enjoying the nice weather, too. Because he gets so cold so easily, it's harder for him to play outside during the winter than it is for some of the other kids. He's been able to come out and help me with some of the routine tasks in the garden. "Reuben, pick up the pumpkin and put it in the wheelbarrow."

Gloria is growing up so much! She was just a baby when we started the adoption process for Bobbi and Mira - twelve days before she was born was when we sent our commitment documents! And look how grown up she's getting!

Oops. Another one of Eben "snuck" in. This one puts me in stitches every time. He's all head and thighs!!

 

He was watching me massage Mira's hands one day, and decided to try it himself! It's hard to believe that this girl hasn't been hospitalized since May!!! She's such a delicate balancing act, but we seem to have a number of things working for her, even as dumb as the one-half suppository every other day routine which keeps her regular, which keeps her calmer, which prevents regurgitation when she's straining too hard to move her stool, which can be aspirated, and BOOM! pneumonia. Who knew half a suppository could have such good results!! Of course, we're coming up on the season of exciting respiratory adventures, so we're expecting we'll end up with some time at our favorite hospital before the winter's over, but that doesn't stop us from being grateful for five months free!

 

Have to sneak in another one of Krassimir that his teacher sent me. Look how good he looks sitting up in the chair at school!!! First year of high school this year for him...and Owen, too. They're both at the same high school (where Bobbi graduated from last year). 

This is, as I mentioned, Owen's freshman year of high school, and ALSO his first year not fully home schooled. I still get him for a few classes, but he's got the first four class hours of the morning next door at the high school, and it's been a great thing for him. Here he is playing soccer with Gloria on a rare day when he had some time to spare for his siblings. She was tickled, and he kept looking over me asking discreetly, "What am I supposed to be doing? I have no idea what the rules of this 'soccer' game are!!!" He he. 

Gloria and Evania are so sweet growing up together. They are 21 months apart, but are often mistaken as twins. Here they were helping me back up 4 loaves of green tomato bread (Gloria) and four loaves of pumpkin bread (Evania).

It hasn't been ALL beautiful weather around here. Rinnah's in the center of this photo (in blue) playing her last soccer game of the year two weeks ago on a COLD and windy Saturday. Yikes!!

And Matt's actually gotten time to push the bathroom forward little by little. We're now bathing in the new one, and best of all, the sink for the "vestibule" between the hallway and the new bathroom (the space that used to be the old bathroom) has been hung!! It sounds silly, but this tiny room is my current favorite room in the house! We can stand there and brush our teeth - often four at a time - while someone is using the toilet or bathtub in private! Amazing.

There. Something to keep you going!!

Truth

Was thinking today that, really, that most of the internal mess that any of us deal with in life comes when we're not knowing and acting on the truth, and that the inverse is true - the answer to any situation we find ourselves in is to dig down for what is true, believe it and live it.

There. Was that obtuse enough after a solid month or more of silence?