more about the Bobbette

 Four and a half years ago we took our little family on a trip up north to the North Shore of Lake Superior.

In the background is Split Rock lighthouse. In the foreground is our means for hiking with a non-mobile child.

Perched on a rock

At Gooseberry Falls (which is wheelchair accessible until you get right down by the falls themselves)

...at which point Dad can carry down the rest of the way.

Another method for carrying someone who is not yet mobile!

All of us outside of the hotel we stayed at, which is made from converted railcars!

 

We've been talking seriously for the last year about doing it again, but this time around, it's a little more complex. First of all, Krassi is bigger than he was four and a half years ago, and though we still do the "sack of potatoes" carry with him a lot, it's a little tougher now than it was...and Bobbi doesn't work as well that way! Tsvetomira can stay with Crescent Cove, but we wanted some way to have both Bobbi and Krassi be able to be involved with the active parts of our days if we made the effort to take a family trip!

So, we researched, and found this, which is pretty much amazing in pretty much every way: the Joelette.

But the price tag was a little (significantly!) steep for us, particularly because although we have three kids who could potentially use it (Bobbi, Krassi, and likely Reuben some day, too), it's not like we go hiking every weekend!! So, we thought, can we rent it from someone? Nope - closest we could find is in Colorado, and just wasn't feasible.

So, we researched some more and found this, which is not as amazing: (link here). But it has a much more accessible price tag. But would it be worth it for the cost? No foot rest, and, more significantly, would really require ALL carrying, and not have the benefit of the wheel to roll along and support weight during easier/smoother stretches of the hike.

Months passed, and then we remembered that we knew someone (distantly) who makes custom bicycles!!! So we thought, why not? We sent him an email asking if he thought he could rig something up with the more important features of the really nice vehicle with a price tag more reminiscent of the not so nice vehicle, and he said...yes!!!

His family passed through the Cities on their way to Wisconsin last week and left the in-process "Bobbette" as they've named it, with us to try out so he can make any last adjustments before powder coating it (in Bobbi's color of choice - espresso - like her beloved coffee!!)

It works SO WELL. It's so well balanced that when you're just running it along on the ground, both the front and the back person feel like the other must be doing all of the work because it's so easy to work with. He's got a great cushion incorporated in as well as a nice secure harness. The footrest needs a bit of adjustment, but otherwise, we can't really think of anything that needs to change! It's so perfect! (And he managed to figure out a way to get it to fold down small, which was a feature we said we didn't need to have, but because it DOES fold, we can take it in the back of Big Blue without needing to hook up the trailer or take Owen's pick up truck!)

It's so easy to use that even Rinnah is sufficient to be the front "sherpa" when we're going on fairly straightforward terrain.

Here we are this past weekend down by the Mississippi River at a hiking spot (Pike Island) we've enjoyed in the past...but not ever with Bobbi! We paused a bit to throw rocks, so Matt's just holding it on his own. There's an option to flip the wheel back so it can sit stable on four legs when we're stopping for any length of time, but it wasn't worth doing for this short pause.

Set up and take down is pretty quick.

We managed to do a lift over some driftwood at the shore, and even to go up a rough cut flight of stairs. There are two mini-handles on either side of the chair, too, so if we needed to we could easily have four (or up to six, if each person took one handle) people to lift and move if/when the terrain requires.

North Shore, here we come! We have reservations at the same hotel for the first week of June, and we're really looking forward to an adventure. We're bringing Rose and her husband along, as well as our adult niece (and her two-year-old) to stay with Grandma who can't really be left alone anymore, and the girls' best friend, Hope, who we consider to be our seventh daughter. And probably our nephew (Owen and Krassi's age), because even though he's not really into hiking, he and Owen will enjoy the time together, and we've got the rest of the family anyway! (The two of them are our kids' only cousins on Matt's side.)

Go ahead and check out Randy's web page (click on his logo below for the link) - he's the one creating and fashioning the Bobbette for us!

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!

Made it to Fifteen!

Not counting Grandma G and Matt, we've reached the final birthday of the year as Mira turned 15 the day before Thanksgiving. In the spirit of giving thanks, we are so grateful for how generally healthy Mira has been over this past year. Especially this year with all of the limitations, it's been very nice to not have her spending weeks at a time in the hospital. Just two years ago was when she spent her birthday not only hospitalized, but in the PICU. (pediatric intensive care unit)

Oh, wait! Looking back at photos, it was three years ago that she was in the PICU on her birthday:

It was Bobbi who was in the hospital on Mira's birthday two years ago:

And since I'm reminiscing about late Novembers spent in the hospital, it was ten years ago that we had our first hospital stay with any of our kiddos when Reuben first got his diagnosis of epilepsy.

That diagnosis was one of two events in my life that break all of my experiences into "before" and "after." Reuben's diagnosis forever changed the direction that our lives would take, including being a major piece of what led us to the events (Krassi's, and then Bobbi and Mira's, adoption(s)) that led to the existence of this blog. Ten years.

[Deleted is the start of some other thoughts that were developing deeper, but I've got to just post this and move on - time is limited!]

School at home

After the school year beginning with some of our kids (Owen, Krassi, Reuben, and Bobbi) in our public school district's hybrid model (two days of distance learning, one day at home with no formal stuff, and two days in class...though for Owen, his start date was the last to be phased in...) we are now in a fully distance learning scenario, which started the week that Owen was supposed to finally get to go to two days of classes in person! Poor guy. 

Our academic goals for this year are pretty simplistic:

1. learn something (by spring 2021 know *something* more than you did fall 2020)
2. do stuff you wouldn't normally get to do in a normal year.

For our physically capable kids, item number two has included some nice long bike rides, ranging from 6 miles (in which the younger girls did all of their own biking) to 29 miles (in which we left the younger two at home, put Ebby in the trailer, and Mom, Owen, Leah and Rinnah biked to Hudson, WI!)

One thing we all learned from that experience (so goal number one!) is that a 12 or 13 mile bike ride is really nothing, so we did that with Gloria and Evania along as well, though Owen rode Huckleberry so the little girls could swap back and forth between riding with Owen and riding their own little bike so their legs had a chance to keep up! After a few technical difficulties...

...we were back on the road. There they are - six of my ten, clambering all over a little trickle of a stream running under an abandoned railroad trestle.

As much as I treasure these days together, they are not without a pang of longing for the ones I've left behind. And not that it's not *possible* to get more of them out with us - Krassimir can ride Huckleberry, and Reuben has a bike that can be converted to trail behind me or Owen, but it needs adjustments that didn't make it to the top of the list this summer, and some days it's just more work than I can get myself geared up for.

The accomplishment of this year's goals is still happening for the others, but it just looks different.

Here's Krassi doing some of his homework: self-feeding! For a guy for whom eating is still a hateful part of the day, having him participate is pretty fantastic. As you can see, he requires a lot of coaching, but he can do it! I'm particularly proud of the way he manages to finish each bite in such a way that he can get every last bit off the spoon - that's not easy to learn!

Tsvetomira's days are still just a back and forth between her cozy cushion corner and her chair, between contended sleeping, and the sometimes-agony of voiding and stooling. But she's been enjoying her once a week trip to PT, and Dad has learned a few tricks that every now and then he has time to put to use with her. Here she is doing some weight bearing on her elbows at the table.

Ebenezer continues to take great delight in Mira's nurse who comes in four mornings a week. "Hi, 'tine!" he says, "Check on Mira, check on Mira?" They have a daily routine of him helping her "chart" while Mira gets her "shake shake" (vest treatment for respiratory function).

Bobbi's obviously had an interesting year with starting her new job - it's already been two months that she's been working at Kwik Trip! Also new just last week is a Foods class she's taking at the local technical college through her post-high school transition program. Even though all of the students have been transitioned to full distance learning with the increasing cases of COVID in our state and county, the technical college students are still able to do some of their learning in person. Here she is making a pumpkin pie. She still needs a lot of help, but has also continued to develop her skills. My favorite thing lately is when she's helping to bake anything and we're practicing math by having her work with the quantities, she almost automatically doubles or triples everything...because that's just how we do it around here!! Multiplication skills, here we come.

And I realize that this has turned into a little update on almost everyone except Reuben, so in the interest of him not being left out, here's a recent shot of Reuben:

Twinning with Dad. :) Although we've seen a lot of good changes since the introduction of his new diet in Feb and March, he's still just got a lot of rough spots that he deals with. We'll have weeks (like this one) where vomiting is a daily (or more!) occurrance, and nights where his default-tooth-grinding is nearly non-stop...and he insists on sleeping in our bed...with his head resting on my skull...and we let him because sometimes you get more rest with a tooth-grinder on your skull than you do when he keeps climbing out of his own bed and needing to be put back in. It's also easier to monitor for seizures when he's on top of me. Hard to miss.

One of his new frequent words is, "river." We've taken as many chances as we can to get him to a variety of moving bodies of water over this unusual fall where winter keeps pretending to come and then fall returns. It's so good for him to have something to do that is active and doesn't involve his iPad.

So there's a little view into some of what's happening around here!

Fourth of July

For the first time, we've been able to make our annual 4th of July fruit tart flag using only fruit from our own yard! Those are blueberries and black raspberries for the stars and the stripes are red raspberries and sour cherries (you can't grow sweet cherries where we live - *just* too cold in the winters - but this variety is considered "the sweetest of the sour cherries" so they're edible right from the tree...as long as you're expecting a tart treat! Thankfully all of our kids (who eat food) are accustomed to less rather than more sugar, so they will all happily eat these right off the tree).

 The Fourth of July has always been a big deal for our kids. We have a few years' running tradition of inviting our neighbor/cousins, S & S, over (one Matt's dad's generation and one Matt's generation) for the afternoon and evening, just this year it's without fireworks.

We started off with red, white, and blue water balloons, with Dad as the target.

Reuben's sneaking up on Dad. (It was hot. Pants were optional for certain children who don't regulate temp well - we live in a fairly secluded yard for being in a first-ring suburb!)

A whole crew busy loading up - the sled is full of balloons. Krassi loves this! His favorite method is simply to squeeze each balloon until it explodes in his hands!

You'll notice there's no Bobbi. 😒 Some days "family" is a little too much! (Yes, that's partly just teenager and partly that she's kind of all or nothing and doesn't want to have to share her time with S & S with her siblings!) And partly, it was REALLY hot, and she's got a pretty decent bedroom on the north side of the main level that doesn't get as hot as much of the rest of the house does! But still, we missed her. And Mira, who had other plans for the weekend...

We followed up the excitement with hot dogs, guacamole, and other goodies (including rhubarb crisp that S made with our rhubarb) and instead of fireworks, watched...Anne of Green Gables!!

A day in the garden

The summer before we met and brought home Bobbi and Mira (but after we'd started the process) was a sort of idyllic year as far as our yard and gardens were concerned. Gardening has long been a hobby of mine, starting with a bleeding heart that my grandparents got for me and my parents let me plant in a little foundation garden behind our house and moving to a little 10x10 vegetable plot that my dad dug up in the back yard as we got older. When I was twelve we moved and I got to help my parents design the landscaping for the bare naked yard (brand new house) and my dad double-dug two beautiful 5' by 20' veggie garden beds that I thoroughly enjoyed. I can't remember at all what degree of success we actually had with the garden, but I DO remember how much I loved the planting and watching things grow.

Matt comes from a long line of farmer/gardener/yard-putterer stock. The almost-one-acre yard that we live on is what's left of his grandpa's truck farm from which he used to take produce to the St Paul Farmer's market. Our current vegetable garden is about 2000 square feet, and was the "kitchen garden" on Grandpa's property. His grandma (who I never really got to meet because her Alzheimers was quite progressed by the time I met Maty) had been an amazing flower gardener, and the yard is still full of all of her old beauties - peonies, iris, and many other treasures. We still get fruit every fall from the old apple and pear trees that his grandparents planted, and raspberries in the summer from the ones they used to eat off in the summer. One of our favorite things to do together when the kids are in bed (or during the day with them!) is putter in the garden - weed, plant, move, plan.

That summer before the girls came home was almost too good to be true. The weather was great, I wasn't pregnant (so the ground didn't seem like it was a mile away!) and Gloria was a content enough baby that she was happy to just be around, but didn't feel the need to be constantly held, so we spent many delightful hours outside. Oh yes - that was the year our neighbor worked at a garden center, and all summer long was bringing home off-casts that didn't look good enough to sell, but just needed a little TLC to be just fine, so we had a great influx of interesting plant material - everything was simply ideal. (I blogged a bit about it here.)

The years since then have been not so good in the gardens. Yes, we've gotten out there a bit, but it's been a sacrifice that I've felt that something that means so much has been taken away. This year, however, has come in a way that it feels like a smile of delight from a Father who knows me. There is so much that inspire worship when you're out in the middle of what he has created!!

With yesterday's incredibly beautiful and mild weather, on a whim we brought Mira outside. It's not super easy to get her in and out of the house (oh, I'm so ready for that ramp we're dreaming about!) but earlier this spring we reshaped some of the hillier parts of our yard so we have a more wheelchair friendly path to the back yard for Bobbi, and decided to try it for Mira!

Here she is in the shade of the huge crab apple tree (which every year shades more and more of the veggie garden!) where she won't get a sunburn, but can still feel the wind in her face.

After a while, Bobbi decided to join us, too, which is a pretty common passtime for her these days. Sometimes she'll bring her Bible out to read if it's not too windy. Sometimes her iPad if she's close enough to the house to still get wi-fi, and sometimes, like today, she just comes out to see what we're up to! Matt put her to work watering the gladiolas.

Here you can see Matt hilling potatoes, Reuben settling down with his iPad (at least he's not wandering!), Mira all wrapped up in her blanket, and Bobbi leaning in with the hose.

Lest you miss this, let me bring to your attention the joy that it is to have Bobbi contributing to this venture! It's a joy to have her interested, it's a delight to have her contributing meaningful work to the well-being of the garden, and such a great way for her to get to see in real life how God has designed all of these systems to work! She, remember, helped Dad cut the potato sets, so she's been involved to some degree already with the garden, but to have her out there working with us is fantastic. It's one more little thread that is getting woven into our lives as we live life together. Starting from sixteen years of none of those connections makes these interweavings that much more significant.

And for the record, Krassi did not come out yesterday. But's he's been out plenty of other times this spring! He still really only has his one ASL sign ("I want!/Mine!") but he gets a lot of mileage out of that one. We can ask him, "Krassi, do you want to go outside? Or do you want to stay in the house?" Once he knows the two options, I'll ask again with a pause in between, and it's usually not too hard to tell which one he's looking for! So he's not left out, here's a photo from a few weeks ago. I love how great he looks lounging in these chairs! He gets up there from laying on the grass all by himself! In and out and in and out all afternoon.

A brief update

• We got the report back regarding Bobbi's birth family. They were only able to speak with her grandparents, learning that her mother and older half-brother have moved with his wife and two young daughters to another EU country (which we know). Her grandparents were not really interested in talking much, but even with that, we were able to get a whole handful of little tidbits, that while in and of themselves are not much, were able to answer some of our questions and Bobbi's curiosities. And, of course, to open up a whole bunch of others. There's still hope that her grandparents will choose to pass the information on to her mother or brother and this may not be the end of the story. We shall see.
• Mira is doing really amazingly well. We are keeping ourselves completely isolated, knowing how easily she can get really really sick, and figuring even if we could make it through the COVID-19 virus, she probably couldn't, and since truly the one "goal" or dream that we had for her when we decided to bring her home was that she would not die alone - that when her time comes, she will die with her family that loves her surrounding her and touching her - this is not the way we would choose for her to go! Her nurse still comes in three days a week. She has stopped working for her other family because the mother in that family works in health care, so more exposure than Mira's nurse was willing to risk (and, I think she made the decision, too, knowing that Mira's need for professional care was greater than that of her other client). Rose comes into our house five days a week as well, but she's only coming here, or grocery shopping, even before Minnesota's stay-at-home order went into effect. 
• We have dear friends from church who are doing all of our grocery shopping for us so I don't even have to leave the house. They even brought and amazing full meal for us last Tuesday, which was Leah's birthday, to help her celebrate.
  
  
  

  

  Now my second-born is the fifth teenager in the house!

  

  And there's the fat hands of the youngest, helping himself.

• We DID have to go out for an orthodontic "emergency" for Leah. I talked with her orthodontist on the phone, and he agreed that what we were dealing with fell just over the line into "emergency," so was willing to treat. Her last appointment came two days after they were ordered to stop seeing patients, and her wires on the bottom were protruding far enough that they were irritating her gums. They agreed to just have us give them a call when we got there and come out into the parking lot with their wire clippers so we didn't have to go into the building. Owen, our new driver, drove us over there, with Evania, Reuben, and Eben along for the ride just for something different to do! We didn't even have to call when we got there because they saw Big Blue drive up and knew it was us!
• Bobbi, Krassi, and Reuben are doing physical therapy, occupational therapy and speech therapy (each some combination thereof) over the internet starting this week, and it's gone really well. Krassi was showing off some of his skills this afternoon. See him sitting up so tall!
  
  And that's it for now. Just a bit to let you know we're still alive over here!

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!

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.)

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.