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.

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.

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.

Rehab: First steps on land

No photos, because Daddy accidentally left his phone at home last night, but twice today Bobbi took real steps with her new legs. Here's part of the email Matt send me after the first session in the morning:

Bobbi had a pretty good morning so far. She was in her stander during school and recreational therapies and then switched the chair and went directly to PT where they stood at the parallel bars. She was tired and shaking by the end and she said she was not ready to take any steps, but with a lot of help she was able to take 10 steps. It is not what she WANTS, but it is progress. She feels like her feet are stone and are stuck to the floor. But I keep thinking she is just over 2 weeks into a 16 week* recovery...if we can just help her to be patient and to see the progress that she is making, she will get there.

That was the morning, and when Matt got home early afternoon, he reported that she did it again for ten steps in the session she was in when he left. (*the sixteen weeks Matt refers to is NOT hospital recovery - thankfully! - but based on what her surgeon told her before the surgery: it's going to be a long road, but six months past surgery she'll be able to look back and say that it was worth it.)

The girls and I (minus Mira, plus Eben) got to spend a few hours with Bobbi later this afternoon - what a sweet time. We're looking forward to her being home so we can all be under one roof again, but she's pretty delighted with her hospital room. (Particularly when the people from home keep coming to her!)

Bobbi's room is one of two (the other is unoccupied) that instead of being on the main hallway loop of the rehab unit are on a little dead-end off the main loop. It makes the room VERY private, even with the door open, and that little dead end hallway is a great place for little sisters to play with paper airplanes!!

Status report from Matt

This is lifted from an email he sent to my dad earlier today - figured it says everything I'd want to say, anyway, and saves the time of re-writing it! [I've added some commentary in brackets to fill out details.]

~~~

Mira continues to make progress. As of yesterday when Bobbi and I stopped in to see her [Bobbi had an appointment for something unrelated to her legs at Gillette], she was down to 1 L of oxygen on her nasal bi-pap and they had pulled the foley catheter and had stopped the antibiotic they had started her on last Thursday. This morning when I checked in with the nurse, they said she had been on room air since midnight last night and was holding her saturation levels. She is still on continuous bi-pap, but they were going to try giving her a break from that today and see how she handles it.

Bobbi also continues to improve.  She has not needed any tylenol for the last 36 hours. She is still taking something at bedtime to help her sleep as she tends to get anxious and tight when it gets to bed time. However, the last two nights she has slept the best she has since the operation, so I think the better rest and lack of pain means we should hopefully not get so anxious at bedtime.

Mini bathroom update. I am hoping to wrap up some electrical and plumbing and exhaust fan work this weekend so I can get my rough-in inspections next week and then get insulated. It is a pretty chilly draft coming into the house from the old bathroom! Our boiler [which heats the large addition from a few years ago], which was down for 2 weeks waiting for parts was repaired yesterday (thankfully the gas fireplace was keeping things OK over on that side of the house). However, the new loop that we installed for the radiant is air locked, so the thermostat calls for heat and the pump turns on, but it doesn't actually move any water through the system. The technician gave me some pointers and Andrea and I looked at it last night and have a solution that will just require the addition of 1 purge valve in the new piping we added. Hopefully that will be enough to get us up and running.

Surgery has begun

This is a day that Bobbi has been looking forward to since the first days after she came home. Her goal has always been to be able to walk. She has been working hard in physical therapy since getting home to strengthen her and get her as strong as possible before having this operation. This operation is the next big step in getting her closer to being able to walk.

Bobbi is currently in the OR. Here are a few pictures from this morning. However, I think the most important one is that they got her name tag corrected to be more appropriate and to Bobbi's liking. Any of you that know Bobbi will know immediately what was wrong with the first name tag!

Way too girly girl.

That is more like it!

After getting the name tag issue resolved they got on to the other less important things like going over the checklist of what they were going to be doing and putting the surgeons initials on each location where they were planning to make an incision. There were a lot of initials.

Mom and daughter getting ready to head back to the OR to put Bobbi to sleep.

Bobbi has only had one other surgery in her life when she was about 3 years old and she was dropped off at the hospital by a staff member and was on her own until they picked her up when she was ready to return to her group home. This time Bobbi had her Mom and her Dad (and Eben) with her and she will have one or the other of us or Grandma with her until it is time for her to come home.

Some firsts

Here are Leah and Rinnah saying goodbye to Mira as Mom and I get things packed up for another trip down to the ER with what looks, from the outside, like a perfectly peaceful, contented little girl.

We were getting some funny colored discharge out of the "g" part of her g-j tube (she transitioned to the g-j tube near the end of her last hospital stay to help avoid vomiting and aspiration that can lead to pneumonia).

Mira underwent a variety of tests, labs and scans. In the end, they all came back clear with one exception. She did have some blood in her stool. Most likely what we saw this morning was old blood coming out of her g-tube, but by the time they tested her stomach contents for blood there was none remaining. Obviously, any time there is blood in the stool or stomach, the question is where is it coming from?

So here is the best theory we could come up with. At discharge, Mira's paperwork said that all of her medications were supposed to be given in her j-tube and the nurse confirmed that that was how she had been getting her medication since her g-j tube was placed. However, on closer reading of the discharge papers when we got home on Sunday, we noted that her Kepra (anti-seizure) med was still noted as being given through her g-tube. So on Tuesday when a nurse called to check and see how Mira was doing, I asked about that as well as a few other questions. She conferred with the doctor and got back to me clarifying that the Kepra could be given through the j-tube, but her Zantac needed to be given through her g-tube, even though it had been noted as j-tube.

That should be pretty obvious, Zantac is for stomach acid, so bypassing the stomach doesn't do much good. So for at least 2 days and possible up to 6 days, Mira was not getting Zantac in her stomach and the stomach acid was irritating the stomach lining to the point of bleeding. As of Tuesday night we had started giving her the Zantac in her g-tube again and that is when we first noticed the dark brown liquid coming out of her g-tube and then we noticed it again this morning, prompting some phone calls and the trip to the ER. By the time they drew stomach contents for lab work, they were whitish with only a few dark spots and tonight when I gave her her medicine, the stomach contents were clear.

So that brings us to our first first. This is the first time Mira has been taken to the ER and the sent HOME rather than being admitted to Gillette.

The second first is related to Reuben. Since November 11th, he has only had 13 seizures. That is coming after months of 6-20 seizures a day every day. On November 20th, he had 3 isolated seizures and then went for 37 days with any seizures. Then he got sick with one of the bugs that has been running our house lately and he had a high fever and had 10 seizures in one day. That is a first for Reuben. Reuben has never had seizures when he has had a fever. Typically, Reuben has fewer seizures when he is sick, but having seizures with a fever is quite common. To be classified as having epilepsy you have to have two or more "unprovoked" seizures. If a child has seizures when they are sick and have a fever, that is considered a provoked seizure and does not mean that child has epilepsy. I am devoting a fair amount of time to this, but this is VERY different.

The third (and fourth) first has to do with Bobbi and her walking. She has been steadily getting stronger and going longer and faster on her walking. She has been able to go for an hour at .6 miles/hr., which is the slowest speed our treadmill goes. Recently she has been going .9 mph for about 30 minutes. Yesterday at therapy, she went at 1.0 mph for 10 minutes and then today when at 1.5 mph for 2:30 before she collapsed from laughing.

Reuben the plumber [by Matt]

This weekend while Andrea's parents were in town, I had her dad help me tackle a project that has been on my list since the day we turned the water on in the addition, but that I had not gotten to in the past 2+ years.

There were a number of things about the west addition to our home that were a first for me. Plumbing was one of those things. Shortly after my Mom moved in, you may remember a post about water leaking out of the light switch in the hall and having to cut a hole in the ceiling and re-do some of the waste piping below my Mom's toilet. [Can't find the post right now - will link to it if/when we find it!]

Well, there was another plumbing issue in my Mom's bathroom. Namely that the hot water in her bath tub never ran at more than a trickle. Cold water was okay and hot and cold water were both fine at her sink. But for some unknown reason, the hot never worked well in her tub. Since she is not usually in a rush, we would just plan plenty of time to run the water and it was OK.

So this weekend we pulled the faucet apart. We had thought that maybe something was wrong with the cartridge, so we got that off and then tried running hot and cold water separately to see if there was a clog in the cartridge. Nope. We were really hoping it was the cartridge as that would have been an easy fix. Now we were wondering if the pex piping had gotten kinked somewhere or who knows what.

With the cartridge out, I did notice that the check valve on the hot water was less open than the check valve on the cold water side. We decided to pull those out to see if there was something clogging up behind the check valves. Here is what we found.

This is the back-side of the check valve. Notice anything out of the ordinary?

In total, there were about 5 shards of wood jammed into the check valves. Mostly on the hot side, but a couple on the cold water side.

Now we get to the heading for the post. I can't prove it, but I am pretty sure that my little "bum, bum" addition helper Reuben was behind those wood shards getting into the pipes. He was often out helping me and it would be just like him to pick up pieces of wood and stick them into the open ends of the roughed-in pipes. Then when everything was hooked up and we turned the water on, they got pushed into the check valves where they have been sitting ever since. Thanks Reuben.

It ended up being a simple fix after all and it is very nice to have normal pressure and volume on the hot water in my Mom's tub after having her live with it for two and a half years.

This was apparently the weekend for working on west addition projects. On Saturday I cleaned up the last pallet of a few siding materials that had been sitting in our front yard since we did the addition. That was a very good feeling.

Valentine's Day [by Matt]

A month or so ago, when Andrea was reconciling our credit card statement in Quicken on our computer, she commented that out of all of the payments on the account, to which we both have a card, only 4 were on my card and 2 of those were automatic payments and the other two were for gas at the gas station. We joked that she needed to let me out of the house more often!

I got my chance this past Saturday when I had to run out to the store to pick up a prescription. I decided that was my chance to get something for Andrea for Valentine's Day. In general, we don't go out of our way to do "extra" things for days like this as we both believe that it is far better to live a life day by day that demonstrates our love for each other than to once a year do something "extra". However, since I was out so close to Valentine's day, I did get her some chocolate that she likes and gave it to her this morning at breakfast.

Then this evening at supper Leah passed out all of the valentines that she had hand made for each of the members of our family. I was touched by how creative she was and how she made each one so specifically for the person she gave it to. Below are just a few images of them.

Here is the one for Mira just telling her how much Leah loves her.

This is the one for Bogomila, written in Bulgarian.

On Krassi's wrist is a Valentine's bracelet for our guy who loves to wear bracelets

As you can tell, he thought it was pretty neat.

While these are "extra" things that Leah made specifically because it was Valentine's day, it reminded me of what life around our house is like. There are plenty of things about the general size of our household and the decisions that we made as a family to make room for Mom and for Krassi and Tsvetomira and Bogomila to be a part of our family that can bring about daily challenges. However, it also gives us many opportunities to love, day in and day out. Much like Leah's valentine's day cards, what it looks like to love each person in our household looks very different and is specific to each person.

At Gillette [by Matt]

Tsvetomira is now at Gillette Childrens Specialty Healthcare (where Reuben and Krassi go) and Andrea is feeling much more comfortable that they are listening to her and are doing everything they can to help. The Dr. even wants to talk with Adam as soon as he lands and is reachable by phone.

Bogomila is doing well. We got all her stuff unpacked and set up in her room and we had dinner and spent a bit of time just talking with her new siblings. She is currently listening to some of her music in her room by herself while she waits for her pajamas to get out of the wash.

Once I say goodnight to her, I will be heading over to the hospital to spend some time with Andrea and Tsvetomira.

Tsveti is not doing well [by Matt]

She is at the hospital with Andrea, but she is not doing. They are in the process of transferring to Gillette, but please pray. Andrea is very concerned that she is dying.

2 new US Citizens [by Matt]

The plane has landed and I now have two more daughters that are US Citizens and are for the first time in their lives "home". Andrea will call when they get through customs and immigration and then I will be picking them up and bringing them home briefly before running Tsvetomira to the hospital.

Tsvetomira did great for most the flight, but was having sustained seizures about 1.25 hrs before arrival and they gave her diastat (like we use for Reuben, when necessary) and she has been sleeping peacefully since then.

Can't wait to see them all!

Simple Things [by Matt]

In Minnesota, it has been a very busy few days. I have not taken the time to post pictures of the progress on the bedroom, mostly because I have been too busy working on it! It is getting closer. I plan to be sanding/priming tomorrow (Friday).

However, I felt I needed to pause from my work to share this from today. At supper time, I came up from working in the basement to help get supper on ready and to get everyone to the table. I went out to get K from the living room and he was whimpering a bit and his nose was red and his eyes were wet and I immediately started to try to figure out what was wrong.

So I started at the beginning of the day. This morning K had a bone scan at the University of St. Thomas as part of a "stander" study that he is involved with at Gillette. It was not his favorite, as it is a "medical" environment, which always makes him more tense and it was a new location he had not been to before. Add to that the fact that they wanted us to hold him still for 30 seconds to 3 minutes to get accurate scans of his bones. 2 hours later we went home and he seemed fine. Maybe he was still bothered by something about the morning?

Around lunch time Andrea and I skyped to try to figure out what it is going to look like on Saturday when they get home and who is going to take T to the hospital and when, etc. As part of that call, Andrea had a chance to talk to each of the kids for a few minutes. Maybe K was really missing Mom after seeing her?

All day today, Owen has been cleaning his stuff out of his bedroom to make way for Bogomila's furniture so it is ready when she gets home. Late this afternoon, K had crawled his way in there for a bit. Was K upset because things are getting all changed around in his room?

At supper itself, he was just whimpering and giving me "the lip" and did not want to eat hardly anything. What is going on?

Toward the end of supper I thought I would see if he wanted to take a bath as that is usually something he loves and I thought it might get him out of his funk. I perked up and put his arm to his chest saying that it was "his turn", but pretty quickly was sad again. Now I am really wondering...

Then the light bulb turned on. He had had his AFO braces on all day from the time we went to the scan until the end of supper. We often take them off when he gets home from school or just at some point in the afternoon to give him a break and then sometimes put them back on again. However, with him not being at school and me being in the basement working all afternoon, I completely forgot about his braces not being taken off.

I took his braces off and with in 10 seconds he was his normal, mostly happy, self again. He still got his bath and thoroughly enjoyed it.

So here I was trying to figure out what kind of emotional drama he was dealing with and how in the world could I help him through it and the simple answer was that his feet were tired of being in his braces and he just wanted a break!

Now, back to the mudding!

On the homefront [by Matt]

Like most of you, I am waiting to hear the details of what has been happening in Bulgaria! I have received a few emails with little blips of info. All in all it has been a good day with some complications, but nothing that has caused major problems at this point.

One of the emails that came through was also an updated itinerary for Adam. He has changed his flight to one day earlier, so he will now be arrived in Sofia on Wednesday afternoon and will have one more day to help Andrea with Tsvetomira before traveling home on Saturday.

In Minnesota, other than Reuben have a rough 24-36 hours with seizure activity on and off, things have been going remarkably well. All of the kids have been doing better than expected with Mom gone. Even when we did Skype on Sunday, we were worried that Gloria might not respond well to hearing and seeing Mom and Leah on the phone, but she thought it was the greatest thing and when the call ended, she was just fine.

I can't wait to see Gloria's face light up when she sees Mom and Leah and Bogomila (and Tsvetomira, though Gloria will not be as excited about T, since she is not used to us talking to T over Skype like we have been with B) on the next Skype call, whenever that ends up being. There will not be room for all of the family to come along with me to pick up from the airport, but I think Gloria will be one of those coming, as she and Bogomila have a special bond that they developed when Gloria traveled with us to meet both girls.

Anyway, I have to note a BIG reason things are going so well at home is that Grandma F (Carolyn) is here helping. She has been reading a ton of books, helping with homeschool, washing and folding laundry, picking up the house and doing all sorts of other things I probably am not even aware of. She is making it possible for me to get business work done as well as get some time to work on the new room in the basement. I lost half a day of taping time when I was holding Reuben on Sunday afternoon, but that was the more important thing to be doing anyway.

Here are a few pictures I took when all the drywall was up, but no taping had been started. As of tonight, most of the 60% of the joints are taped and all of the larger gaps have been pre-filled in preparation for taping and installing corner bead tomorrow. The goal is to have everything first coated by the end of tomorrow.

 

Looking from the window area to the hallway and closet.

The window wall. Working at night means it is always dark outside, but during the day, these windows flood the room with south light.

Owen's bed cubbie awaiting the mattress platform that will be put in after the drywall is done and the cut outs for two books shelves.

Time to get a couple hours of sleep before Gloria wants to snuggle with me, since she can't nurse with Mom this week. So far Reuben has been out solid for about 3 hours without any seizures. It would be wonderful if he could get a full nights rest and be a little more back to his normal self tomorrow.

Make that 200! [Now with photos!]

[This is Andrea hi-jacking Matt's post from a different continent. The internet is so weird. Here I am on the other side of the world editing/modifying something my husband wrote back in MN! Anyway, you can look below for the photos that I've taken off the camera.]

Since Andrea is on a plane somewhere over the Atlantic currently, I thought I would give a brief update on a couple of things.

First, Andrea did update the footie pajama count on the sidebar to 201, but did not have time to actually write anything about it after writing that we had 100. We are very excited about all of the PJ's that came in. Thank you to everyone who donated. Andrea and Leah and Scott all have their bags full of PJ's as well as a few other things, but they are maxing out their 2 checked bags for each person plus a carry-on.

What does 201 pajamas look like?? Here's Leah helping Andrea to unpack - because we had so many, we divided them up with our other things packed in between, and somehow made it without going over the 50 pound weight limit on any bag!)

There - are you impressed??? Well, don't be TOO impressed, because this photo doesn't include all of the ones still sitting on the bed! (See the photo below this one.)

There's still a pretty big pile on the bed, too!

Leah is sitting on the couch surrounded by pajamas - she's there to give you a reference point for where the seat of the couch actually is! That thing is piled HIGH with pajamas!!! Incredible!! I know Matt already said a thank you, but Leah and I, and Toni are sending one, too!! There are actually so many that Toni has asked if it would be okay to split them up and share them with another orphanage director she works with that also has a great need for something like this. The children at Pleven are more than amply supplied with what you were all able to help us bring, and I told her we would be glad to spread the coziness around to another group of children, too. She reiterated how pajamas like that are nearly impossible to get here, and how wonderful they are for the kids. (I know! Most nights in the winter there are five or more children in our own house wearing their fleecy footies!!)

Second, the insulators did make it yesterday morning and were pulling out of our driveway when Scott and Carolyn arrived shortly after 1pm. At 1:30, the inspector came and passed us on our insulation inspection. By 2:15 Scott and I were already working on hanging drywall and then Chad showed up at 3 to help as well and by supper time we had all of the ceilings up and probably 25% of the walls. We took a break for the evening, as Andrea and I had a client meeting and then there was packing to be done.

This morning before we took our travelers to the airport and then again this afternoon after we got back from dropping them off, Owen and I were working on drywall and the closet is totally done and the main bedroom has 1 piece left to put up and then we just have the bed cubby to do. I anticipate all the drywall will be up tomorrow and I will be getting started on putting up corner bead and maybe starting to tape and mud.

No pictures with this post as the camera is with Andrea and I have not figured out my phone well enough to take photos and then get them to my computer...maybe I will get there...I know it can't be that hard, it just has not been an important thing for me to figure out thus far. [So here's Andrea to the rescue!! Though, sorry Matt, I won't be able to do this any more this week!]

The ceilings are done and there is sheetrock on the south/window wall! (Still need to do a bit of trimming around the window opening.) Matt is measuring for the next piece on that first wall.

There's Dad and Chad (just his shoulder visible by the end of the purple wall) ready to measure and set up the next piece.

The next day (Friday before the travelers left), Owen and Dad got the interior of Owen's closet all done up.

Matt cuts, and holds while Owen gets the first few screws, and then he can finish while Matt cuts the next one!

Now the wall to the left of the window wall is done (except for the well pump/bookshelf cubbie).

And the wall on the right of the window wall? Matt's measuring...cutting...

...and there it's up! Instant room!

And there's that elusive bed cubbie of Owen's that wasn't done when Andrea left, and apparently still isn't done. But it will be before too long!

Thirdly, yesterday morning we had our last Skype call with Bogomila. Out of that call, one of the really neat things was hearing her talk about how she was excited to start PT in the States. She made it very clear that she wants to learn how to walk! Andrea and I were overjoyed to hear this. We have been confident that with PT, Bogomila could learn to walk [probably with some form of assistance from equipment) and be more independent, but we were not sure if she would be motivated to do so. Hearing her say that she wants to was wonderful.

Bedroom Update [by Matt]

Framing, window and mechanical inspections have been passed.

Insulators are scheduled for Thursday AM.

Drywall arriving today or tomorrow.

Insulation inspection at 1:30 PM Thursday.

Drywall starts going up anytime after the insulation inspection.

Provision and Timing [by Matt]

As I was driving back from the pharmacy (after picking up a new bottle of Reuben's "rescue" med since we had just used up his last bottle this afternoon) I was thinking about a number of ways that God has been providing for us as we prepare for Andrea to go get our girls and bring them home.

Last Wednesday I was with Krassi and Reuben at the YMCA while Krassi was having his pool therapy. Reuben and I were hanging out near Krassi and his PT, Lori, talking about plans for the girls and getting them home and we were talking about how we were going to be trying to figure out how to custom fit a car seat that Tsvetomira can be in during take-off and landing procedures. Adam has a seat he will be bringing and Andrea has ordered some memory foam and the two of them were planning to just cut and piece to try to get the best fit they can once Tsvetomira and the car seat are in the same location.

As we are discussing that, Lori with a mix of excitedness and sadness tells me that she has some positioning foam that she can give us that is specifically intended for doing exactly what Andrea and Adam will be trying to do. Lori was excited because this will be much better than the memory foam alone and she has it and she can just give it to us to use. The sadness is because the reason she has the foam is that a person that she had been treating for close to 20 years passed away and this person's mother gave the foam to Lori and told her to find someone who could use it. You could tell it was a bittersweet moment. It has also been neat to see how excited Lori has been getting about potentially getting to work with Bogomila and maybe Tsvetomira and help them to new levels.

As long as we are on the topic of people from the Therapy center, last week while Andrea was out with Gloria at her 1 year doctor appointment, I got a call from Reuben's OT (Kelsey) saying that she and Reuben's old PT (Brian) wanted to set up a Pajama Drive at the therapy center to be able to send some PJ's with Andrea to Tsvetomira's orphanage. As of Friday (after only two days) they already had 15 pairs. It will be fun to see how many they have by this Thursday when the PJ drive is done. If you have been following this blog for a few years, you will recognize these names from when we were getting ready to bring Krassi home and both of them helped us as we were working on the addition to our house.

Late last week we also got another substantial financial gift from someone who had already donated, but knew that God had been telling them to give more, so they did. Amazing!

Then on Saturday one of our neighbors called to tell me that he was going to be coming over to pick up his daughter, who had been playing at our house, and to drop of some PJ's and something else for us. Before I get too much further on this story, I need to also fill you in on some of the emails we have had with Toni (our Bulgarian attorney). We have been trying to make sure we have plans in case we need to take Tsvetomira somewhere for emergency care while Andrea is still in Bulgaria. We have a plan figured out and part of that plan requires us to have funds to pay the hospital if we end up needing to go that route.

In Bulgaria, medical care is free to all citizens of the country. The catch is that since Tsvetomira's birth certificate has been re-issued with changes related to the adoption, she (as well as any other adopted child) is no longer in the database and therefore can not get free care after the adoption proceedings have taken place. So, that means we would need to pay cash for her care. Based on Toni's estimate of cost for a worst case scenario stay, we has figured the amount we would need in cash.

When our neighbor arrives, he gives us a bag of PJ's and then an envelope that is something their family wanted to share with ours. You guessed it, it is the exact amount (in cash) that Andrea and I had been discussing!

I know Andrea has commented about this before, but if anyone out there is reading this and they are considering adoption and feel that God has called them to it, but they don't see how the finances can work, be encouraged. If God is calling you to adopt and you are obedient to that call, He will provide you with what you need.

Lastly, but by no means least, we have been getting volunteer support from our church and neighborhood friends who are making themselves available to bring food or take kids to therapy appointments or stay with our other kids so Andrea can take Reuben and Krassi to therapy if we end up taking Tsvetomira to the hospital and I am staying there with her.

I guess that was the last part about provision! Now onto timing.

Sunday morning before church, Leah said she did not feel well and that she did not want to eat breakfast and just wanted to stay home, so we let her stay home. Andrea said she did not feel well, but she would go to church anyway because if she stayed home she would end up keeping Gloria and/or Krassi home with her and it would not end up being restful anyways, so she would rather be at church. She made it OK, but as soon as we got home, she spend the rest of the day in bed trying not to move. Leah was fine the whole time we were gone, but ended up throwing up a couple times this afternoon.

I am glad I am going to have Carolyn here next week to help me as when I was trying to do everything today on my own without Andrea or Leah's help, it was a little crazy, especially at meal times!

By bed time, Leah and Andrea were feeling a bit better, but Gloria was running a fever and Reuben also seemed feverish. For Reuben, he might be sick or he might just still be off from his runs of seizures the last two days. Either way, something is moving in our house. Then as I am up laying kids down, I hear Andrea whisper up the steps that my Mom threw up in her bathroom and that I needed to come help clean that up. That is a step in the right direction...last time my Mom was ill, it was all over her bedroom on the wood floors. I much prefer the bathroom tile floors for cleaning up.

So what does this have to do with timing? I think it has everything to do with timing. Andrea and Leah are the first two to get sick, which means they stand the best chance of  being better in time to leave on Thursday. It would also be much nicer to have whatever this is get in and out of our house before Andrea and Leah leave and Carolyn and I are trying to keep things in order around here.

So in the midst of a crazy day, where it would be tempting to ask "why now?", I am instead able to say "Thank you". Thank you for timing everything exactly according to your plan and not mine and thank you for providing everything that we need.