More siding and the dump trailer

First off, MIRA HAD HER SURGERY!! Fourth time scheduled, but she managed to make it without being hospitalized for illness, and we're past it! So far it seems to have been a VERY good thing.

On the garage front, the past week and a half has again shown a little progress. Owen was able to get his dump trailer from work over here, so we took the opportunity to fill it (which is how we've been getting rid of stuff instead of having to fill a huge dumpster all at once!) It was kind of fun at the end of this day to see that the only photos I had taken were of my boys carrying heavy things. First, we have Ebenezer dragging this big old part of an old swing set...

...and then Matt and Owen carrying what was left of Matt's grandparents' clothes line which had to be taken down to make room for the garage - the plug of concrete buried deep in the ground was HEAVY!! The two men were able to carry it from the side yard to the dumpster, and I was able to grab a photo before helping them lift it up and in.

Then we were back to siding. Matt and I got the east side of the front entry finished, and Owen came up from his room to the sound of the nail gun, and climbed up on the roof to help finish the part above the cantiliever, which let me and Reuben run some errands!

AND, Matt had time to finally start putting some of the old siding back onto the original house as well! 

It's not rapid progress, but every little bit gets us closer to done, and being able to do it by ourselves is WAY more cost effective than paying someone to do it!

A few weeks ago I started reading this blog out loud to the youngest four children, starting at the beginning. One of the reasons I wrote it was to communicate with all of you, but the other big reason I laid out in the beginning was so that *we* would have a record of God's faithfulness to look back on in the future. 

From Psalm 77:12-13 "I will remember the deeds of the Lord; yes, I will remember your wonders of old. I will ponder all your work and meditate on your mighty deeds." It's good for us to spend time reflecting on all he has done, big and small!

The youngest three were all born AFTER our first adoption and the big addition, and Evania and Gloria were both too young to remember any time before Bobbi and Mira came home, so although all of this is *their* history, they're not aware of any of it, and I'm excited to share it with them.

I was briefly mentioning this to Gavin one evening, and recounting how the blog is a story, among other things, of God's marvelous provision of what we need to do the work he has set before us, but how sometimes one way he provides is by making things take longer than we think they ought to take. He jumped on that one immediately, recognizing God's design to build patience in us as we wait on him, and we are absolutely seeing that in this building project as well. And part of patience is learning to rejoice in all of the little victories along the way! 

Back in the hospital

 

I don't have a picture of Mira, but here's her empty bed, because she's back in the hospital AGAIN. Starting right around Christmas, Mira's been just not great. She was in the hospital for a week or so at that point, but not with a clear diagnosis.

She's been set to have a surgical procedure for a salivary gland ligation (basically stopping her from producing as much saliva because she has a hard time managing liquids, and there's always the risk of aspiration, so this would help to mitigate that.) three times now and has been hospitalized within days of when the surgery was supposed to take place. She also has an infected ear tube, so they're going to remove that hardware at the same time. Except, for the third time this year, she's not, because she's hospitalized instead.

As is often the case with Mira, you know something is wrong, but you really don't have any solid idea of what. This time her hands and feet were swollen and she was having trouble keeping her oxygen levels up and she as having some issues with high muscle tone and high heart rates. So the list of questions/possibilities start going through your mind. Pain from her dislocated hips? gall stones? pain from the infected ears? aspiration pneumonia? neurological/seizures?

Thankfully Gillette has a quick-care clinic we can go to that avoids the emergency room and has doctors and nurses who know Mira. They were really booked today, but managed to squeeze us in between other appointments. First stop was to get some blood drawn for labs, then in for a chest x-ray, then back to the room to wait for the doctor. Labs came back indicating some type of infection (but is it in her ears or lungs or...?) x-ray came back looking worse than some, but the radiologist said there was not indication of aspiration or generalized pneumonia (so why is she having trouble keeping her oxygen levels up without the help of oxygen or her bipap machine?) Blood levels related to liver function are quite elevated (not the worst they have ever been, but definitely quite high) which could point to there being issues with the small gall stones that we know she has. However, by this time it was mid-afternoon and there was not time for her to be off her feeds long enough to get in her for an ultrasound before the end of the day, so that is scheduled for tomorrow morning.

So what do you do in the meantime while her respiratory rate is in the 70's (normally in the teens to 20's) and her heart rate is getting up to 170's (normally 50-70) and she is stiff as a board because of her high muscle tone and none of the tricks for rubbing her hand or back or neck are helping her to calm down?

We discussed with two providers (one who has never seen her before because now that she is 19 she on the adult unit and one who has been seeing her since she first came home) and decided that we would start her on an antibiotic (that would cover ears and lungs) and then give her a small dose of oxycodone to see that would help her to calm down, which would lead us to believe that pain is the source of why she is getting so worked up. If that didn't help, then we would move to valium. She got the oxycodone at 4PM and it was not until 6PM that her heart rate dropped below 100 and stayed there. Seems like the oxycodone should have taken effect quicker than that, but maybe not...either way by the time I left at 7PM, she was resting peacefully in bed with her heart rate around 70 and her oxygen levels in the mid-90's and respiratory rate in the 30's. 

Still no solid answers, but it was really nice to see her calm. I spent three hours just holding her on my lap and to start with, she was like a rigid balancing beaming tottering from side to side over my legs. Slowly she began to relax and was able to just lean against my chest and relax.

She's back home :)

 Right on schedule, Mira finished up her antibiotics and has been sent home. For a quiet little girl who doesn't do much, she sure leaves an empty space in our home when she's gone!

All ready for bed with her bi-pap machine on. Hard to believe she can't see with the "look" I caught from her in this photo!

So far so good

 Mira's surgery went well. Her surgeon commented that her bladder was very thick, which, if you think about what you know about muscles (and the bladder is muscle tissue) means that her bladder's been working much harder than it ought to for quite a while now. We *knew* that (anyone who spends as much of her day trying to pee as Mira does is working harder than is normal), but it was a nice confirmation that this was a good time for the surgery to happen.

So many things that most of us take for granted - like the ability to coordinate the squeezing of one's bladder with the releasing of one's sphincter - are just really challenging when you have the degree of neurological disconnect that Mira has.

This should make a lot of things much more restful for her...and supposedly should be fairly complication-free (a hole in your abdominal wall sounds like a great way for infection to get in, but apparently because there's a continuous, low-volume flow *out*, contamination *in* isn't a big concern.)

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.

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.

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.

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.

Before and After

Well, the sprinkler systems behaved themselves, so surgery happened this morning!

Once more, here's Ebby before:

And this morning, all dressed up in his surgical gown:

Even though we're no stranger to it, there's still something tough about watching them put your little ones to sleep, and when they're so tiny, laying that limp little body on that big bed in that big room full of equipment and walking away is just hard to do.

He woke up screaming heartily, but fell right back to sleep on my shoulder for another good 40 minutes I'd say.

That gave me enough time to finish what I'd been working on in the waiting room...you see, we typically have our kids look in their stockings on St. Nicolas' Day, which is December 6th. When Owen and Leah were little we called it Little Christmas. I've cross stitched a stocking for myself back in high school, then one for Matt, then Owen and Leah. My mom had done one from the same series for herself and one for my dad, but since she's learned to knit, she let me have those two for Reuben and Rinnah (pick out the old name, add the new!) I managed to get one done for Krassi and Evania, and then I picked the name out of mine for Bobbi. I'm still working on Gloria's. Maybe next Christmas! But for Ebby I just took Dad's and picked out the name (but kept the "E") and was able to finish up during surgery this morning! Because of the surgery, we'll have the kids dig into the stockings tomorrow instead of today.

So now, all the stockings are hung by the gas fireplace with care...

As you can see, Gloria's using a blank one again this year, and Mira's still using a blank one (which we put some candy for me and Matt, since Mira's not much into candy, and neither of us have our own anymore!) By next year maybe I'll have Gloria's real one done, and then I can start in on something for Mira. I'm not quite sure what I'm going to do for her, though, because I've now used all nine that come in that series!! But seriously, that's pretty low on my Challenging Decisions list. I've got bigger fish to fry, and we'll cross that bridge when we get there!

All in all, Eben is doing quite well. He spent most of the afternoon sleeping on my shoulder, but perked up a bit around supper time and before bed. The eye looks pretty rough. But that's to be expected. There's a 20% chance that he'll need to repeat the surgery to get it just right (that seems high to me!), but we're hoping that we hit the 80% that are just right the first time.

Eben's surgery...as far as we know

Well, here we go again. Barring the unforseen (like last time, when we got a call the night before saying the surgery center's sprinkler system went off so everything was canceled), Eben will have his corrective surgery for his strabismus tomorrow morning.

It only took 14 months...

...but Bobbi's back up on the treadmill again!!! The recovery from this surgery is still progressing steadily, but it's been a MUCH slower process than I think any of us were prepared for. She's not very fast, but she's finally fast enough to be able to go at .6mph, which is the slowest speed that Grandma's treadmill will go. She managed five minutes yesterday, and today went for ten minutes total, though took a few breaks along the way. Her goal is to get back up to walking for an hour.

Because she still has issues with her legs crossing, and she's not fast enough to be able to correct as she goes (which she can do when she's just walking on the ground), Dad created a fantastic device that puts a board between her feet held in place by the uprights on the treadmill.

Bobbi doesn't like the sound of Daddy's favorite tool, the impact driver. 😁 Thus her goofy face! I tried taking a video, but made a joke, and she laughed and lost her stride and I had to rescue her, so no videos yet.

Standing

Bobbi, post surgery, can STAND. This she could not do before, as everything was so out of whack that she could not balance. She still doesn't stand for long, and things like laughing can throw her completely off, but today she added new skills, like turning her head and moving her hands. It may not seem like much, but it's these kinds of things that we keep seeing every week - steady progress forward!

It's kind of hard to tell, but Lori (therapist), is not touching Bobbi at all - she's got her hand on the safety belt around Bobbi's waist, but is holding it completely slack. That's all Bobbi!

Rehab: day 1,000,482

(Or something like that!)

Have I mentioned that the recovery from this surgery is a long road? Well, if I haven't, I have now.

And yet, there is still measureable progress steadily happening. Here's a glimpse of the work on the robot two days ago:

Last week she walked for three minutes with the support of the sling, but doing all of the motions with her own muscles - no help from the robot itself!

On Tuesday, she went six minutes, and then did the rest of her session with the robotic legs, and then today when she and Dad got home I asked how it went, and she said that it was still six minutes, but they had her carrying a higher percentage of her own body weight.

As you can see, she's getting some help with positioning her feet, as the legs still have a tendency to want to pull in and cross, but she's doing all of the lifting and stepping forward - and those are nice big steps!!!

Rehab continues

Am I delinquent or what?? I have three posts in draft mode that I'd forgotten I hadn't finished up! Here's the oldest one from a week ago.

Bobbi's still going back to Gillette twice a week to work in the robot. How does she like the robot? Well, she hates it. ;) It's not very comfortable to be all squeezed into that machine! But, according to the readout (shown above), she is doing increasingly more of the work and weight bearing herself. It's working!! It's a very slow process, but we're continuing to see incremental, but measureable progress.

Rehab: Day 2

Rinnah joined Dad on an afternoon visit to Bobbi today. Grandma was with her through the whole day, and is spending the night with her again.

Today Bobbi got to try out this cool rolling stander. It serves multiple purposes. First of all, it gets her standing for long periods of time without really realizing that she's standing because there's other stuff to distract her, or at least that's Dad's hypothesis! It also gives her a good cardiovascular workout, especially considering she's supposed to get out in it for three thirty minute stints outside of her other therapy sessions!!

She likes it. She finds it easier to maneuver than her wheel chair since the wheels are more out in front of her where she grabs them. She thought she would see if they noticed if she tried to bring it home with her!

Here you can see her in action!

And Eben's waking up and looking for something warm to drink, so I'll let Matt finish up the post if there's anything else he wants to add!!

During a small bit of "down time" before supper Bobbi was working on writing some notes. Her schedule is pretty busy, but she does get a little break around lunch time and in the evenings.

The big rehab begins

It ended up being eight weeks instead of six weeks in the casts, but today was the long-awaited day when Bobbi begins her inpatient rehabilitation stay at Gillette. Dad, Eben, and I joined her as they began with removing the casts, taking x-rays, meeting with the rehab doctor who will be overseeing her stay, and then seeing Dr. Healy to confirm that, yes, we're seeing the degree of healing he wants to see in her bones before beginning the intensive work of getting up on those legs. She got the final fitting on her ankle-foot orthotics, and then we found our way (with the help of her physical therapist for the duration of the stay) to her room in the rehab unit - a new unit for us at Gillette.

The casts are going away! (The tool in the tech's hands is the saw that will do the work...)

Washing her legs a bit after the cast removal.

Taking a few minutes with Eben

Watching the bubbles while Bobbi got her x-rays taken.

I still marvel at these images. The one on the right is before. Notice the location of her kneecap. The one on the left was taken today. Now, do we wonder that she wasn't able to ever straighten her legs?? It still boggles my mind that anyone can do something like this to the human body and expect it to work.

Bobbi got to use the remote control to lift herself from her wheelchair into her bed.

Batman, who was a gift from Grandma and Grandpa (Andrea's parents) during her first hospital stay, "decided" that he was going to come along for rehab as well. Here Bobbi and Batman are optimistically checking out their new home for the undetermined future.

My mom is in town with us again, and will do the honors of staying with Bobbi at the hospital so I don't have to take care of everyone here single handedly. Eben in particular is going to miss his sister, because now that 1) her room is available, and 2) she's not here to be bothered by some crying, he's going to get some practice sleeping a little bit more during the night. For the last week he's been up about every hour and a half wanting to nurse and snuggle for an hour, leaving me with very fragmented sleep. Poor guy himself isn't really hungry, and by the 5am awakening is pretty overtired, too. We're hoping a slightly more secluded place will give him the chance for some more undisturbed sleep, and that he and I will only snuggle once or twice during the night. The duration of her stay should be the perfect amount of time to settle into some new sleep rhythms!

In the meantime, we're pretty excited about the changes that the next days/weeks hold for Bobbi!