A private concert

I've mentioned before Hope Kids and some of the neat experiences we get through that organization. Well, earlier this week, we got to attend a private Hope-Kids-families-only concert by Jason Gray. It was a pleasantly casual setting at a church not too far from us with maybe 150 people at most, and very much the freedom to have kids sitting on the floor, and Reuben reading a book with Dad, and me in and out of the main room with little ones (Eben, Gloria, Krassi), back and forth between the lobby and little nursery.

(Half of the kids are in the picture, half of them are either already in Big Blue or wandering around near the cookies! ;) )

Two days away

Tomorrow is our first day of our two days away. Both Matt and I have a feeling that what we're mostly going to accomplish over this time is opening up some cans of rather interesting worms that we can spend the next few months chasing down and figuring out what we're going to do with.

But more seriously, for those of you who pray, please be doing so for us tomorrow and Saturday. We've got some heavy topics to discuss (largely related to parenting, but also shortcomings that we're aware of in ourselves, and maybe some that we'll become aware of) some practical/logistical things (are we ever going to really do something about the garage that's slowly falling down? Or a ramp? and what and when? and how?) some fairly basic things (I'm hoping to take a 40 minute nap!) and some fun things (Bobby and Krista, we're finally going to use the gift card to Five Guys that you gave us five (or more??) years ago!) and it's a lot to pack into two days no matter how you look at it.

A different kind of "poison"

Tonight was the night for disgusting bodily fluids. Ebs started it. He will sometimes gag easily, and can cough until he vomits. (I'm realizing this is enough of a pattern that I'll be mentioning it to his doctor, but in the meantime...) So we stripped him quickly, and because it was small and in an out of the way place, left it for later while I picked up other things on the way to getting little people to bed.

Next was Reuben. With the new tube feeding, sometimes we get the quantity or the pump rate off and he vomits at the end of one of his "meals." We're definitely getting better at it, but have had some doozies. Today's came while he was curled up on the comfy oversized upholstered chair in the dining room. What. A. Mess. All over him, his clothes, the blanket on his lap, the iPad, his Bible, and pools of it running down between the arm and the cushion of the chair. Dis Gus Ting. So I cleaned him off well enough that we could keep moving people to bed, and by the time I got back downstairs Matt was home from picking up Bobbi and Leah and was already working on disassembling the chair (we removed the dust cover from the underside and tossed it - he said it was working like a coffee filter with all of the fatty solids pooling and the water dripping through onto the wood floor.) I went out into the living room (yay, concrete floors!) and cleaned up Eben's little spot, and then came to help Matt with the scrubbing in prep for laundry. Because this high fat diet does NOT wash out nicely when it is vomited back up!

Just as we were getting that under control, Mira, sitting up in her chair, started getting a little agitated. So Matt washed up his hands from the last bit of the vomit, picked her up to move her back to her cushion, and ... ewwwww......... His hand was covered with dark, slimy poop. And the odor. Too bad (well, not too bad for you!) you can't do scratch and sniff on a blog! Poison is too gentle a word for the smells that girl can produce, and this one was one of her finest. It's, of course, not confined to the diaper, but squirting out the sides and up the back onto her shirt. Her chair, even with the chux pad under her, had a pool of poop and the cover going up the back was also nearly saturated. I got the job of the chair and Matt got the girl. So I spent the next half hour scrubbing out the chair cover, her shirt, and then fatty vomit out of blankets, Reuben's shirt, the towels I used to clean him up, and then Eb's stuff which was nothing after that.

Finally get it all in the wash and then time to tuck the big kids into bed (and tell all of you about it!) and that was our evening! Phew.

Oh. I forgot to mention that Reuben kicked over his Sunday evening urine sample, so I got to clean that up off the bathroom floor as well. I guess that's nothing compared to everything else. ;)

As Bobbi came through the (foul smelling) room on her way to get ready for bed, we (jokingly, because it's not usually an issue for her!) asked her to make sure she made it to the toilet! (She did.)

Just a little taste of the exciting life we live over here! (And that was just the last four hours! It doesn't cover Reuben's vomit from yesterday, the cat peeing in the corner of the dining room, or a variety of other exciting events of the weekend.)

Poison

The poison of the lies engrained in the worldview that develops in a child who is abandoned and then left to grow up in an institution runs deep. And that's all I'm going to say about that.

On a lighter note, three of our girls performed with the Bulgarian dance group this past week. Leah's in the back row, Rinnah in the middle row on the far right, and Gloria's in the front a little nervous with her hands up by her mouth.

Bobbi continues to delight us with her artistic skills. She prefers coloring to drawing, so finds line drawings on the internet that we print out for her, and then she gets to work, layering on crayon, marker, colored pencil, oil pastels, until she ends up with something like this:

zoomed in a bit so you can see some detail

And, believe it or not (well, we always say we'll know it's going to happen when it actually happens!), Matt and I are going to get our two days away to think with no interruptions at the very end of this month! We've only been thinking this was critical since September, and here it's finally happening. I find it humorous that it will overlap with leap day. Can't think of a better thing to do with an extra day of the year! We'll be coming home for the night time stuff, but Matt and I *should* get 8am to 10pm one day and then 8am to 5pm the next day.

One week in

We are now one week past Reuben's g-tube surgery. His g-tube site is healing well and he is able to move around without wincing every time his abdomen tightens!

Getting used to the new diet is tough on Reuben and is a bit of a challenge for Andrea and me to juggle to make sure we are keeping all of his intakes balanced and getting him enough additional water. Not to mention having to figure out which feed pump is beeping and needing attention. Is that Mira or Reuben?

Everything related to Reuben's eating is far more regimented than it used to be. The first few days we had trouble with Reuben vomiting. Our guess is that this was most likely due to him having a very small stomach and us trying to get more volume into him than he is used to and it all being far fattier than his normal diet. So we backed way off after that and have been gradually working up to where we are supposed to be.

The last few days we have gotten all of his meals and all of his extra water completed and he has tolerated it OK. We do a combination of ketogenic formula and water through his g-tube and some meals by mouth. However, yesterday at lunch we had pancakes and today at supper we had pizza and Reuben was really bummed that he was not able to have those things as well. He was just sobbing when he couldn't have pancakes. Tonight at pizza time, he was upset for a few minutes and then was willing to settle for some bread with LOTS of peanut butter followed by some heavy whipping cream!

The main reason for switching to the ketogenic diet was to try to get some control over Reuben's seizures that do not respond well to anti-epileptic drugs. We had heard from other parents of kids with R20 that this diet can have good results, but it is not easy to implement. Thus we had not, as of yet, tried it with Reuben. Needless to say, the past month-and-a-half made it pretty clear that we needed to try something different.

So far, we think we may have seen some absence type seizures from Reuben on Thursday in the afternoon/evening, but we are not certain. Aside from that, we have not seen any seizure activity since the day after his surgery. So far so good. Hopefully he should be able to return to school next week, now that we are getting his feeding figured out and we have the necessary doctor's orders for him to be tube fed at school.

Reuben was even feeling good enough this morning to join a number of the rest of us for a few trips down the hill! There's even room on there for me at the back, but someone had to get off to take the photo.

Made it home

We did indeed make it home JUST in time to make supper for Owen's birthday. Owen was ready to remind me that his birthday wasn't nearly as important as being home on Monday to take him to get his learner's permit! As mom, being here for both was better. 😀 Owen passed his written test yesterday, and has already logged 30 minutes of driving. Reuben is doing better day by day, but we're still having a hard time getting the entire recommended diet into him each day. We can hit about 75%, but when we go past that, he vomits.😟 As his surgeon said many times, Reuben has a VERY small stomach - likely the result of not eating very much for quite a while. Today was our best day yet, and his energy continues to increase. He does still feel quite uncomfortable at the surgical site, as evidenced by the way he moves, but he is moving around, which is good!

Best of all, he hasn't had any seizures that we are aware of since mid-day Saturday!

Home on Feb 1?

Everyone here knows that our big big goal is to get me and Reuben home today and not have to wait until Sunday.

Matt messaged me yesterday with this photo saying, "Tell them you ARE coming home [Saturday]."

Thank you, Eben. If you look close you can see that he's sampled pretty much every slice.

Saturday (today) also happens to be our first-born, Owen's, 15th birthday! Especially when you consider that I've already been staying in the hospital with one of his siblings for a g-tube placement surgery (among other things) over his birthday three years ago, it would be really nice to be able to come HOME for this one!

Reuben is tolerating what they're putting through his g-tube very nicely. They're now working up to larger and larger bolus feeds every few hours of the keto formula aiming for 240 ml in an hour and then from that side we're clear to go home.

He's still mostly non communicative, but looks overall MUCH better than yesterday. We couldn't really see a difference before and after surgery, but he looked just horrible yesterday.