Surgery complete

Sitting with Dad before surgery in pre-op.

Ebenezer also got a chance to snuggle with dad in pre-op!

Just a quick update that Reuben is out of surgery and back in his room. He had a rough night last night with lots of larger seizures and this morning was pretty much unable to do anything or even communicate. Back in his room this afternoon after surgery he was at least able to interact a little bit.

Eben and Evania and Gloria did great job hanging out at the hospital again all morning and into the afternoon today.

They said he might have a large rash of seizures today after coming off the anesthesia, but so far he seems to be doing pretty well.

Sweet boy resting in his room after getting out of the recovery room.

If all goes well, he and Andrea should be returning home tomorrow.

Just got a text from Andrea saying that Reuben spoke his first word since coming out of surgery. "Bible". He never goes anywhere without it (except into surgery!)

G-tube 2 Update = New Date

Got an update from Andrea around supper time tonight that the surgery has been postponed until 10:30AM Friday morning. His original slot was 9AM Friday morning, but they thought they could get him in this afternoon. Ends up that didn't work and there is actually one other child in front of Reuben tomorrow morning.

G-tube 2

As you might have guessed from the title, we will now have two people with g-tubes in our house. Andrea and I took Reuben and Mira for their 6-month appointment with their neurologist. Mira's appointment was very quick and she graduated to a 1 year appointment interval.

Reuben, on the other hand, was given instructions to be admitted to the hospital for a g-tube placement as soon as they could get him in. Reuben was having so many seizures during the appointment that his Dr. did not feel he could in good conscience send Reuben home for a later follow-up appointment. So Mira and I dropped Andrea and Reuben off the Gillette's main building/hospital and then continued on our way home. For some time Andrea and I have felt that a g-tube was going to be in Reuben's future and as we were driving to the appointment yesterday we both commented that there was a very real possibility Reuben was going to get send directly to the hospital. We were right!

His seizures have been getting bad enough, that it took me 10 minutes to get 6.5 mls of medicine into him because he was not able to swallow. Eating and drinking have been very difficult because the seizures are so close together that he get stuck with food or drink in his mouth and then drools it out when he loses control of his mouth with the next seizure. So for safety reason and weight gain reason, the g-tube was the way to go, even if we were not going to start the ketogenic diet. However, we also determined that the ketogenic diet is likely the best option for Reuben at this point. Anti-seizure meds do very little for Reuben or other people with Ring 20 Chromosome Syndrome. Some people with his condition to get some relief from the ketogenic diet.

Yesterday and today have been filled with conversations with the dietician as we try to figure out how to start introducing the ketogenic diet for Reuben. His current diet is mostly carbs. Break, nutella, chocolate milk. The ketogenic diet is mostly fat. Eventually they want him on a 3:1 ratio of fats to carbs/protein, but that will require a 3 to 4 day hospital stay so they can monitor blood sugar levels and other indicators. In the meantime, he should be coming home tomorrow on a 1:1 ratio that will hopefully start giving him some of the benefits of the diet while not requiring the next hospital stay right away. Luckily Andrea is very good with numbers and enjoys that challenge of figuring these types of things out!

Yesterday they also did an EEG to check Reuben's "new normal" for brain activity and establish a new baseline before we start making changes. The report is that he is technically in "status epilepticus" where his brain is showing some seizure activity continuously, even if it is not visible on the outside.

After getting all the electrodes on for the EEG and getting his fancy hat, he spend some time reading books.

And he also got to spend some time with the "balls" that he loves watching.

So, right now, he should be in surgery for the placement of the g-tube. Andrea or I will post an update when he gets out of surgery.

Last night he has some large seizures and did not sleep very well. However, this morning he had 3 siblings join him to keep him company.

How many kids can you fit in that hospital bed?

and under the hospital bed!

Reuben got hit pretty hard with a large tonic clonic seizure during some imaging they were doing and then fell asleep while waiting for the procedure to start.

A blessing

This past week I [Matt] have been able to share with a number of people how Reuben is being protected by God in the midst of some difficult days.

Shortly before Christmas, Reuben's seizures took a twist. They often do this every 3 to 6 months and we arrive at our new normal. This time the new normal is hundreds of seizures every day...heading for a thousand a day, but probably not quite there and we are not even really trying to keep track at this point. They are nearly continuous all day and all night long. However, they are for the most part short partial seizures where he is still conscious and only loses control of a part of his brain/body. Then there are a few drop seizures and few generalized/tonic-clonic seizures scattered in the mix.

What I have shared is that every night when I take Reuben up for bed, we read a book and then I pronounce a blessing over him and then we sing. The blessing is the same every night.

May the Lord bless you and keep you.
May the Lord make his face to shine upon you and be gracious to you.
May the Lord lift his countenance upon you and give you peace.

Some nights it almost seems wrong to pray such a blessing over him when he has been seizing all day long and is periodically seizing while I am blessing him. But then again, it doesn't seem wrong and in fact God has fulfilled the statements in the blessing.

The things mentioned in the prayer above are not about circumstances. They are about a state of being. You can be in difficult circumstances and still experience God's face shining on you and Him being gracious to you. You can have peace, even when everything seems to be going wrong.

This is indeed what I see in Reuben. By this point in his life (prior to this new normal pattern) he had experienced thousands of seizures. Now he is racking them up really fast. And yet, he is still the personable Reuben we all know and love. He keeps getting hit over and over again and he just keeps getting back up and picking up where he left off. Reading a book with him his head will droop down and his lips will quiver for a few seconds and then his head will pop up and he will point at the page and say something about it and we will continue on. Walking around the house, he will just lock up and not be able to move his feet, so you just hold him until he "is back" and then you keep walking. No fussing, no complaining...just get back up and keep going.

Over the past week Reuben has had a few drop seizures that have landed awkwardly and even with his helmet on, have still managed to draw blood on his jaw line. Nothing too serious that a little ice, some tylenol and a bandage could not handle. They hurt and he would cry a bit and then be going again.

This morning it was a bit tougher...he didn't just get back up and keep walking...at least not right away. Shortly after breakfast one of the drop seizures hit and Reuben fell forward to the floor totally limp. His chin took the worst of it. The first glance told us we were not going to handle this one at home. Luckily Leah was able to cover the home-front so I could drive while Andrea sat in the back with Reuben.

Reuben was a champ in the triage area of the ER. Holding out his arm for checking his blood pressure, holding out his finger for the pulse-oximeter. They applied numbing cream and got us into a room to wait for that to take effect before coming in to take a closer look. So, Reuben and Andrea sat on the bed reading books and taking selfies...including a selfie video where he has a partial seizure during the video and is actually laughing at himself as he sees himself having the seizure on the screen.

Reuben did great as they put in two internal stitches and seven external stitches. That numbing cream is pretty amazing, he didn't even flinch while the Dr. did the stitches. She actually tried to do most of them while he was having a partial seizure so he would not be aware of it. After they were done, we asked Reuben if he was ready to go home and his response was "No". He was having a fine morning hanging out with Mom and Dad at the hospital. We came back home and made sure he always had someone close to him while he read books, played on his iPad and watched some of his videos on the computer.

There was some crying after it happened because it just plain out hurts to hit the floor face first with no muscle control or awareness to slow or break your fall, just face first onto the floor. But after that, Reuben was just back to his normal self. So no, Reuben's circumstances are not great, but Reuben does appear to have the peace of God surrounding him.

Reuben post-script

Reuben's partial seizures tend to get worse as the day goes on, so after having to tell him yesterday that, no, he couldn't go out with Daddy and be in the snow while Dad shoveled (because we didn't have an extra set of hands to help hold him up!) it was an absolute delight this morning when Dad was out again and Reuben asked again, " 'no? Daddy?" to tell him that, yes! he could go out and join Dad! I bundled him up, and about 20 minutes later dad was done and the two of them came in. Reuben can't see a thing with his hat over his eyes, but we can all see the smile of delight on his face.

He will wipe away every tear

Oof.

This post has been waiting under the previous few for a chance for me to sit down and write and think.

Reuben's seizures have been a moving target since they started going on ten years ago. We'll settle into a normal semi-predictable routine and stay there, usually for a few months at a time, and then...it will change! And we'll figure out the new normal. Sometimes these changes are minimal (seizures hit in big clusters every 4-5 days instead of every 6-7 days) and sometimes, like the fall after the girls came home, it's a much bigger shift, where we went from most of his seizures being weekly clusters of tonic/clonic seizures that usually started during the night time hours to a new pattern where the seizures were hitting at all hours of the day, and were hitting every single day. He regressed in so many areas during those months, and it was really hard to see the boy we knew slipping away between our fingers.

Late that fall we started medical cannabis and another pharmaceutical, and ended up with a beautiful month long reprieve (no seizures!!! Ca-razy!!) and then for the last two years have been more or less predictable.

Until a week or so before Christmas. We'd seen two or three days in the month leading up to it, but then, like a switch, he's been having more or less continuous partial seizures all day and most of the night. Sometimes they're punctuated by the bigger tonic/clonic seizures, but mostly he's just walking or sitting around all day having short little seizures. It's tough for him to even eat or drink because he often can't make it through the bite-chew-swallow without a seizure hitting, and some nights we catch as much of his chocolate milk drooling back onto his plate as he gets into his belly. Most of his seizures have been partial enough and he's got enough awareness of them coming that he can grab onto someone or something until it passes to keep himself upright, but some of them have impacted a broader part of his brain and he tumbles all the way down. He's wearing his helmet a lot more often, but despite that, has had three really good wonks to his chin since Sunday. The first we thought initially was going to need stitches, but it ended up being wider than it was deep, so we made it at home.

We've gone through so many thousands of seizures with this boy that most of the time we just cover them in stride like we do for runny noses and poopy bottoms. And then there are times when holding him through one of those seizures just cuts through me and brings me to tears. That dear, dear boy - so sweet, so isolated because of his limited communication, so isolated because of his differences - all the things he'll never have in this life because of his medical challenges - and so fragile. Living with a child with intractable epilepsy is a daily reminder that we can't take for granted any of the days that we have with any of those whom we love.

The night I started this post, with simply a title to help me remember, was one of those nights that I cried as I held him until the post-ictal stage of the seizure had passed enough that he could go back to sleep and I could head back downstairs. And as I lay there holding him, I thought of the truth of what John records in Revelation that "He will wipe away every tear from their eyes..." and recognized that in order for him to wipe away every tear, there have to be tears there to wipe away. As this (temporary) life makes me yearn for the life yet to come I find great comfort in this little tidbit of knowing that in the new creation there IS a place for tears over the heartache we have experienced in this life. We are not going to be emotionless creatures who don't care about the things that have happened. There WILL be tears. And then those tears will be wiped away "...and death shall be no more, neither shall there be mourning, nor crying, nor pain anymore, for the former things have passed away. And he who was seated on the throne said, “Behold, I am making all things new."

Nine months and counting without a pneumonia-related hospital stay

Mira still hasn't been hospitalized for pneumonia since last May! Yay! Earlier this week she went in for a short out-patient procedure to have her ears cleaned (TONS of wax!) and to have new tubes put in her ears. She handles being put under so well, and came home without any complications, good girl, AND with a new blanket!

 Yes. There really is a little girl under there! And, yes, she really has all the access she needs for breathing (see the photo below) but since it's been plenty cold up here in Minnesota and she doesn't wear a coat, lots of blankets and warm rice socks is her way to go.

The weird world of the digital era

Shutterfly sends these "lovely" memories periodically. This is what I got today:

Yes, I do remember that EEG, and no, I don't really need to relive it, but here we are...that was either Reuben's third or fourth EEG (electroencephalogram), and was done because we were still, over a year into it, nowhere near figuring out why he was having so many seizures AND  why his seizures were changing. It was right after this test, from which we learned nothing useful, that his neurologist suggested we do genetic testing and we learned that Reuben had ring (20) chromosome syndrome. So, yes, I do remember that time from eight years ago!

The other two that regularly come up over the course of the year are the ones from the week Matt's dad died and the ones from Reuben's initial hospitalization/epilepsy diagnosis. You realize that a computer is no substitute for the mind of a real, caring human being! 😀

Tsvetomira

Mira got some beautiful hair things for Christmas gifts this year. There's so little that she wants (nothing!), but gifts like this make me smile as I think back to a conversation I had with our Bulgarian adoption lawyer the week that we picked up the girls. Toni told me that night that she was glad that Mira finally had a family (after having a few other families commit to her and then decide not to follow through), and almost in tears she said that for Mira she didn't care if she ever learned to walk or talk or sit or anything - she just wanted me to make her hair pretty. Every time I brush Mira's hair, or put it up in braids, or even just throw a quick hair band in before we race out the door, I think of Toni. Toni passed away somewhat unexpectedly (but not entirely unexpectedly - she had a number of health complications due to a car accident earlier in life) a little over a year ago, and along with the smile, there's also a sadness that I don't get to send this photo to Toni! So all of you get to enjoy it for her with me.

I think I've written briefly in the past about what a great place Minnesota is to live if you have a disability. It is. We are self-employed, so have no employer through which we can get health insurance, so for years have independently purchased a high-deductible plan for our family (as in, we pay 100% of our health care costs up to the high deductible and then the insurance company pays 100% after that). That in itself always kind of feels like we're cheating since the plans come for one or two adults, and then one, two or three-or-more children. We have three-or-more. So that means we pay the highest possible premium, but it also means that for the last ten years we haven't had to jump into a higher bracket even though our family has more than doubled in size! Additionally, our four children with disabilities all qualify for Medical Assistance as a secondary form of insurance, so anything that our primary doesn't cover for them is covered through MA. This means that if those four kids have enough medical bills to meet the deductible before any of the rest of us need to see the doctor each calendar year, we don't have to pay a cent (beyond our premiums). Because it usually takes an average of four weeks for our four to reach the deductible, all the rest of us have eleven months of the year to go for free. (Broken arms, weird foot spots, ear infections, eye surgery - done.)

But that wasn't really what I wanted to mull over today, but rather something related. All four of the kids with disabilities, in addition to secondary insurance, also get some additional funding via a grant that we can use for disability-related items that insurance will not cover. This summer we learned that Mira, because of the highly medical nature and degree of her needs, qualifies for some extra funds that will cover the cost of paid nursing staff here in our home! Well, qualifying was a great first step, but it wasn't until almost a month ago that the agency we were paired with was able to find a nurse to match up with Mira. But we have one now, and she's been great. "J" comes three mornings a week to help with Mira's morning routine to free Matt up to get to his work sooner, and she's been able to add so much to Mira's life! Mira's cares don't take four hours of solid work, so J has time to do stretching, to get her more frequent baths, and to fix her hair (J's only child is a little boy who's not into having his hair braided, so now she has a creative outlet!!) Her son goes to school about a mile from our house, so she's able to drop him off before coming here, and we have the flexibility in our needs that when the kids in our district have off school, we just give her the day off, or have her switch to another day that week, so she doesn't have to arrange child care. It works well.

She's only been working with Mira for about a month, and only three mornings a week, but it has been so sweet watching the way she interacts with Mira. She will sing to her while bathing her, and even when she's filling Mira's med syringes and mixing up her feed solution for the next 24 hours, she'll bring Mira into the kitchen with her and talk to her while doing so. Yes, she knows that Mira can't hear her, but it's the overall attitude that Mira is a real person worth treating as such that matters to me. On the days when we're not really sure where Mira's at, it's so helpful to have someone who can listen intelligently to Mira's lungs and that that person knows Mira in particular and isn't just listening once every four months like a doctor does! J has also learned how to do some range of motion exercises with Mira (we arranged a single therapy session with Lori, Bobbi's PT who also sees Mira occasionally, so J could learn the specifics), and Matt has taught her how she likes her hands rubbed. Mira is one happy girl on the days that J has been here!

But it's been tough for me, too. *I* want to be the one who can devote hours of time to Mira. *I* want to be able to hold her and rock her and massage her tight muscles, and because she's my ninth child out of ten, I simply can't. I struggled with a similar thing when Reuben was three years old and we were considering sending him to a special ed preschool. I was a mom who home schooled her kids! I didn't want to send any of my kids off to someone else. I wanted to give them the best of me all by myself! It took realizing that even as a mother of *just* three kids, I couldn't match the student-teacher ratio that they were offering Reuben for me to be okay with having Reuben spend three mornings a week at school.

All of those things put together (and more) have put me in a place where I am realizing that although I've poured the last fifteen years of my life into this thing called "mothering" I'm not sure I really know what I'm doing! What IS my role as a mother? As with anything that I do in life, if I'm going to do it, I want to do it well ("Whatever you do, work at it with all your heart, as working for the Lord") but I'm not sure right now that I know what doing it well looks like, so I don't know how to tell if I'm doing well! What does it mean to do a good job at being Mira's mother? And not just for Mira, but for each one of these children that I have been given, because I realize (and this is nothing new), that what each one of them needs from me is different.

This isn't so much something particular to adoption as it is to being a mother in general, but I do think that being mother to children we adopted brings some of these things to the forefront of my mind. Mothering children with significant disabilities brings some of these things to the forefront as well. The whole goal of raising "independent, responsible, compassionate human beings who know and love Jesus" is a tidy package that just doesn't translate nicely to nearly half of our children! And the questions that our four bring to me make me look at the other six differently, too. My slogging through this over the last few months is likely in part why posts have been brief and only skimming the surface, and I think it's important that those of you who read, and have been reading know that life around here is more than just a series of happy snapshots. :) (Though a steady stream of those happy snapshots are definitely also part of our reality, too - don't get me wrong there!) But I'm definitely looking ahead to this new year as an opportunity for a revitalized vision and direction. It's been a goal of mine since September to find a day and a half or two day stretch where Matt and I can get away and have some focused time to talk about some of these things together, and it hasn't happened yet, but I'm still hoping! It takes a lot of coordination to get the two of us out of the house at the same time. 😊