A precision time table

I think mentioned here that Bobbi was ready to initiate a search for her birth family, and we started with just a simple post on facebook that we asked our friends, and particularly our Bulgarian friends through the Bulgarian school here where we live who have lots of Bulgarian friends in Bulgaria, to share the post, thinking that was an easy (and free) way to start.

As we suspected, nothing came of it, so we went to the next step which is to hire a private investigator that used to work with our Bulgarian adoption lawyer who has helped a number of other families that we know of also find their children's birth families.

We liked his policy that we don't pay until he finds something. Once he has a report to give, then the transaction happens, and following that, he'll deliver the information he has collected - photos, video, and responses to a variety of questions that he asked family members.

We have prayed for years that the timing of this would happen at just the right time. When we first contacted the investigator, no one had any idea the whole world would be shutting down in the very near future!! I was fully prepared for this to bring a delay in the whole process, but amazingly, he and his team were able to locate Bobbi's birth family, get the information they were seeking and get back to Sofia before things ground to a halt over there.

Just tonight we got the email saying the report is ready. We expect to have it within the next few days, depending on how quickly the payment processes.

Starting last week, our church has been live streaming the morning worship service. Last week there were about 100 people at church, meaning just over half of the congregation stayed home. It was during the Sunday School hour that the announcement came from our MN government about schools shutting down and recommending no gatherings over 50 people, followed quickly by the no more than 10 recommendation. So far MN has not yet ordered us to stay home, but *we've* been staying home because of the make up of our household! This morning our pastor adapted an article written by John Piper called "Don't Waste Your Cancer" and spoke with us about how to not waste our pandemic. The regular sermon following our sermon series in 1 Samuel will be available to us via pod cast tomorrow. ;) One driving point was that even this (perhaps even especially this) time is designed for our good, and that we will waste this time if we are not viewing it in light of God's goodness and his glory and the work that he is hoping to accomplish. With that as a backdrop, I am interested to see what develops with the timing of this new page in Bobbi's life as she, for the first time, is going to get to see someone who "looks like her."

Social distancing?

This is what social distancing looks like at our house:

That's Matt's hand waving, and you can't see Ebenezer well - his yellow jammies are visible under Evania's arm - but that's seven people (and one baby doll) piled into bed this morning. With no school, there's no rush to get anyone onto the bus at 7:37 am, so we took advantage of it.

Other than that, with five people considered high risk, and eight people who can't be trusted to wash their hands well, we're mostly going about life as usual...at home. Owen and Leah are really the only ones who are bummed about not getting to go out, which helps, and, honestly, I'm liking having fewer (as in, none!) appointments because it means there's just a little bit more time to get things done around the house!

And in the meantime, we read books like this one of Reuben's favorites:

We just changed the words a bit one night at supper and got a laugh out of the older ones who were listening in knowing that Reuben had no idea what I was singing about:

He's got the rivers and the mountains in His hands, 
He's got the oceans and the seas in His hands,
He's got COVID-19 in His hands,
He's got the whole world in His hands.

We are on our way home

After a mostly uneventful stay (as long as you don't count two nights ago which involved vomiting connected to a seizure, and not a tube feeding, followed by nine more seizures in the next twelve hours), we are set to go home! Reuben's urine is steadily showing high ketones, and his blood work has been coming back with good results, and his energy level is good.

We have played LOTS of marbles. (For which I will have photographic evidence once my phone syncs with the internet.)

We're looking forward to all being home together again. I've gotten to be back for supper and jammies every night, which helps a lot, but is not nearly the same as being there all day with everyone!

In case anyone reading is interested, Reuben reached ketosis on a 3.5:1 diet, meaning that for every calorie that he gets from protein and carbohydrates combined, he gets 3.5 calories from fat. We're going to give him three enteral (tube feeding with formula) meals a day at a 4:1 ratio which means he can have one meal by mouth everyday at a 2:1 ratio, which means he can still have some bread and even a tiny bit of the nutella that he enjoys! And at the end of the day we'll still be averaging out the 3.5:1 that seems to be working for him.

Next will be to see what this does for his seizures!

Keto initiation

After a great weekend with great weather during which Reuben got to help Dad boil off sap twice, we're now at Gillette ramping up the fat ratio on this young man's diet. The first day (up to 2:1) was quite uneventful.

We're now halfway through his first feed at the 3:1 ratio. The goal is to get him up to 4:1, if necessary, and to send him home taking three of his four daily meals via the tube at a higher ratio and getting to eat one meal by mouth at the 2:1 ratio - we'll see what ratio formula it takes to get him into a state of ketosis.

The "child life" specialist stopped through yesterday and asked if there was anything that Reuben would particularly enjoy. I said we were pretty well set with his books, his iPad, his stuffed buddies, but then at the last minute thought to tell her how much he likes marbles. Well, as you can see above, she had something tucked away in a cupboard that was perfect for Reuben! Any of you who have been to our house know that we have literally hundreds of marbles on the floor at any given time because of Reuben's great love for them. Now we have marbles rolling around the hospital floor, too!

Today they're expecting him to hit a sort of wall as his body begins to feel the effects of the serious carbohydrate deprivation. It helps that his carbs have been limited for the last month, but with every increase in fat ratio, we're halving the carbs that he's getting. The current 3:1 ratio he's at has him getting 20 grams of carbohydrates per DAY! For those of you who aren't accustomed to counting carbs (as I am after having cared for Matt's mom's diabetes for the last nearly eight years), 20 grams is a large slice of bread, or a five or six ounce apple. And that's it. For the whole day!!! That's not a lot of sugar.

But he's been in great spirits, and Matt seems to be getting on okay at home with caring for the other nine and Grandma. Thankfully both Rose and Mira's nurse have been able to put in a few extra hours to help cover some of the busier times, and we're just winging it on the rest. Our goal is always to come through these weeks with as many children as we had going into the week. The rest of the fallout we can work with after the fact. 😉

"Do everything you can at home"

So Friday Minnesota got our first case of COVID-19 confirmed, and then Saturday, Mira took one of her down-turns. Our typical approach when she tanks like this is to take her to the ER at Regions and then they transfer her up to Gillette. We called ahead this time, like we always do, and their recommendation (which was one of our main thoughts as we called) was to, "do everything [we] can at home."

So we are! Thankfully, she's got a running prescription for a decently punchy antibiotic that targets the pseudomonas that she has permanently dwelling in her lungs. We are supposed to use it when she hits her "red zone" for her respiratory cares. In her "green zone" we are doing 3 times daily vest treatments, and an inhaler twice a day. In the "yellow zone" which she honestly never really hits for more than a few hours, we add albuterol a few times a day and another vesting. In the red zone, we do all of the above and add her tobramycin inhalations to go directly into her lungs. I think the concept is that we knock down a bunch of the bacteria so she can go back to normal again.

She's still running a low-grade fever, and we're still suctioning nasty greenish-yellow stuff, but she's pretty stable at that point overall, so not progressing to where she needs hospitalization over the risk of exposure to other exciting things.

Check out the neat vibrating cat a friend gave Mira! She really enjoys it.

We know part of what she's dealing with is the same nasty viral whatever that about half of us in the house are also fighting. At this rate, I doubt Reuben will be well enough to start his stay at Gillette to ramp up his diet to the full 3:1 or 4:1 keto ratio that they would like to see him at. He's supposed to be admitted Tuesday morning, but he's got a lot of getting better to do before he's ready for that!

In the meantime, even though we're still seeing pretty steady, constant seizures in him even with the 1:1 diet, they are definitely less severe and debilitating than the seizures were before the g-tube and the low-grade keto diet. Because of that, Reuben was able to be fully involved with his favorite yearly activity again this year, including the entire day yesterday, an absolutely gorgeous day.

Boiling away - we need to take off 39 gallons of water for every gallon of syrup we end up with.

Reuben is tireless when it comes to stoking the fire with fresh wood. Whenever I comment to him about how hot it is, he points to himself and says, "Reuben," with a little knowing look on his face like he's saying, "I'm the one that made that fire so big and hot!"

Leah's taken over most of the sap runs this year, going through our yard and two neighbors' yards for a total of 18 taps.

The foam that we skim off the top while it's boiling is a hot commodity!

Bobbi didn't stay long, but did pop over to see it between getting home from an errand with mom and heading down for her first walk of the year on the paved trail in front of our house!

Our two days

No pictures, though I wish I'd thought to take a selfie ;) but we had a really wonderful two days away. We were so glad to have TWO days and not just the one. The first day we got to spend at our neighbor's house, which was perfectly quiet and private and she'd even purchased a really tasty lunch for us ready in her refrigerator (and chocolate for each of us on the coffee table!) so we didn't have to leave until supper time when we had to shuffle a few things at home before leaving again for the evening. We got our nap, got to read a book together, talk together. Wow.

Saturday was more of a planning, note-taking, list-making sort of day, which we spent largely at the library. Even though it was a shorter day than Friday, it was still quite productive (whereas Friday was more connective), and we came away from the weekend refreshed, refocused...and with a to-do list. 😀

We need to do this more often, even if it's just for a few hours!