Forgot one!

This post is a continuation of this one. After I left the computer and was spending some time reading it came to me that this afternoon Matt received a phone call for a new project for our design business! Yes, it's a very small one. Very small. But when you are self-employed, one thing we have found (and loved about being self-employed) is that the mirage of security that is offered by a full-time position paid by an employer is gone. You are suddenly very aware of how dependent you are on God to bring in the right amount of work at the right time to keep your bills paid. I'm guessing that in this rich string of events this week that it is no mistake that it was this week that he got that call.

Matt and I have been growing by leaps and bounds in our understanding of what it means to live by faith. God has made many, many promises to us in his word, and living by faith is not just a matter of "I believed that Jesus died for my sins" but from that as a base upon which everything else builds, it also means believing everything else that he has said through his word, and putting your trust in that. Tonight I was in 1 John. The 25th verse of the second chapter says simply, This is the promise which He Himself made to us: eternal life.

Now at first glance, that doesn't really seem like something that has any impact on the right here and now that we live in. But on the other hand, it does. Immensely. This is the framework through which I work every day to view the things that go on in our life. We've been in 2 Corinthians in Sunday School this year, and there are so many passages that I can identify with - parts that contrast the frailty and temporal nature of our lives with the enduring steadfastness of God. So I looked back at the end of chapter 4:

Therefore we do not lose heart, but though our outer man is decaying [my physical ability to move/lift Krassi is not going to get better any time soon! Matt and I are both beyond tired all the time because of Reuben's sleep habits. Matt's sideburns are showing a few white hairs - we're getting older!] yet our inner man is being renewed day by day. [Every day! Day by day. Psalm 23 - "He restores my soul...for his name's sake..."] For momentary, light affliction [that's worth repeating. Momentary. Light. Momentary, light affliction. That's written by Paul referring to things that from the perspective of this world were anything but "momentary" and "light."] is producing for us an eternal weight of glory far beyond all comparison, while we look not at the things which are seen, [dirty diapers, unfinished interiors, toys and dirty dishes and unfolded laundry everywhere, upcoming bills bigger than our available funds, more work than Matt and an 8 year old can do alone] but at the things which are not seen; for the things which are seen are temporal, but the things which are not seen are eternal.

 We are not to look at these difficulties, challenges, ahead of us as though they are all there is. This is the promise which He Himself made to us: eternal life. We have something eternal to look forward to, and the glory of that makes everything that happens here seem inconsequential, and something to be lived through in the light of what he has promised to those who believe.

Day by day

The last few days have been full of God's shower of provision for us.

On Sunday I was handed an envelope with my name on it, and soon after, someone else gave us a gift bag for Krassi (a stuffed Snoopy). After getting home, we opened the envelope and found a check for $500 with the memo "for Dondi's expenses" written on it. Wow. About an hour later another friend stopped by out of the blue with two big boxes of size 3 and 4 diapers.

On Monday I got a call from the person at our church who arranges meals asking if they could set up a semi-regular schedule for helping us out in the way (yes!!!) So it looks like many weeks on Wednesdays we will have a meal provided for our family.

Then on Tuesday we went to therapy, and Krassi had his evaluation with the PT (Lori) who will be working with him. It went really well. We found out that Krassi does NOT like the ball pit, but other than that, he took to the time very well. I think this is partly because PT was one of a few positive experiences for him in his orphanage, but also because Lori does what she does very well - she was very sensitive to how he was doing physically and emotionally during the whole hour. I also loved how even during the one hour evaluation she was already talking with me about things to be doing with him and ways to be handling him that will encourage the development we're hoping to see. I certainly learned more than I could take in in just an hour, but have a feeling that over the next months, it will stick. ;)

During the second half of our hour with Lori, Brian (Reuben's PT, who you will just have to learn by name because these people are a regular enough part of our lives that I can't always be saying "Reuben's PT" and because Brian has become more to our family than just "Reuben's PT"!) poked his head in to tell me that he had all four of the other kids outside with him. [I think I may have mentioned that our therapy center has arranged for us to have a small infrequently used room in the treatment area to spread out in so we don't have to just sit in the lobby - this is where Owen, Leah, and Rinnah spend their time while Reu is with his therapists and I am with Krassi and his. The rest of the morning Krassi and I spend with O, L, and Ri.] Toward the end of Krassi's time with Lori, she said that she would really like to see him twice a week, and thought she could arrange to change her schedule a bit to be able to get him in on Thursdays when we're already there with Reuben. Yay!

But the best moment yet of this week came as we were leaving therapy yesterday. As I'm getting everyone bundled up and talking with Kelsey about Reuben's OT session (that's another name that you've heard before and will likely hear again), Brian came out to help us to the van since the little guy he usually is with at that time didn't show up. As we were walking out, the PCA for one of the other families came running out saying she had a box of diapers in the van that was for us if we wanted them - I can't turn down diapers the way we're going through them these days! - so I opened up the trunk, and as I was putting Krassi into his seat from one side, Kelsey was buckling Rinnah in on the other side, and Brian was climbing up through the trunk to help Reuben get into his seat as Aleisha was putting a huge box of diapers and chux pads into the back and confirming with me that the wheelchair they had offered last week as their daughter was upgrading to a bigger one was going to be available next week. For us to keep. I was fighting back tears as I drove out of the parking lot overwhelmed by how many people in so many ways are being put into our lives to help us walk this road we've been called to.

And it didn't stop there. Today Krassi had an early morning appointment at the International Adoption Clinic that Matt and I wanted to both be at. Finding someone to watch the kids for an open-ended amount of time starting at 7am is a bit of a formidable task, but a friend from church said she was able and willing to do it. She homeschools her own three children, but they're old enough that she doesn't need to be there every moment.

Just tonight as I was in the middle of writing this post I got an email from a local adoptive mom I've met only via email offering us another special needs stroller, slightly narrower than the one that Dondi has given us. Since the stroller is Krassi's seat while he eats, and since we bring supper to Matt's mom's six nights of the week, having another stroller means that we will no longer need to be moving the one that we have in and out of the house for meals/walks/meals at Grandma's/errands, etc. I am so excited about having one less thing to cart around! We can just *keep* one at Grandma's house now! And to sweeten the whole deal, she also has extra size 4 diapers to offer us.

We are still smack in the middle of a very impossible seeming time. Reuben is always a challenge. Adding a new family member, as smoothly as that transition has been going, is a challenge. Knowing that as I get bigger and bigger over the next six months that those same six months are when we are expecting to see the biggest growth spurt in Krassi, and then the arrival of Baby! is something I just choose not to spend too much time thinking about. ;) Do not worry about tomorrow - each day has enough trouble of its own! Our current insurance for Krassi is going to still leave a big portion of these early medical bills in our court, and there is still a lot of work to be done on the house. And a lot of supplies for that work that still need to be purchased for the house. It all seems so impossible BUT, we believe it when the Bible says that what is impossible for man is possible with God. Barriers that seem huge to us are insignificant to him. So that's where we're choosing to rest.

And days like these are beautiful days of encouragement from him as we hear him saying, "Don't be afraid. I've got so much more than you can imagine in store for you. Trust in me, follow me, seek me, and I will take of everything else, often in ways that are completely outside of what you expect."

Quick stats

When Krassi was 8 years old in June of 2012 (soon after the new director took her position), he weighed 22 pounds.

Six months later in December of 2012, he weighed 27 pounds. That's a big change in a short amount of time!

Right around the time that his adoption was finalized (August, 2013) he weighed 28 pounds. Some growth, but not too much.

Last Wednesday at his checkup with our family doctor, he weighed in a 30 pounds. Not bad.

Today at the International Adoption Clinic, we got a weight of 31 lbs, 6 oz. Yikes. ;)

At this rate, he and I will both be gaining roughly a pound a week for the next almost 6 months! (At least that's been where I usually fall for all of my previous pregnancies. We'll see if the exercise of carrying a growing 9 year old around makes any difference!)

The race is on, Krassimir!

New Header (aka: Krassi's Habits)

The old header, as much as I loved that photo, is now very much out of date. So tonight as we were outside getting ready for our nightly supper run to Grandma's, I asked the kids to pile into the leaves that Leah and Owen have been raking and see what I could get. I'm of course not tall enough to look in the viewer while getting all five kids in the photo, so these were taken by stretching my arm as high up as I could get and aiming as best as I could. Looking through them tonight, I realize that they capture one of Krassi's habits, which I will share with you.

"Now what is that nice lady having me do?"

"Well, since I have a moment here I might as well get to work on this sleeve..."

"...pull, pull...almost got it..."

",,,Yes! Past the elbow!"

"There. That's better."

"Now to get to work on the other one..."
 

That little man of ours is just not happy without those sleeves pulled up!

One week home

Almost to the minute, we've been HOME for one week.

The week has gone much more smoothly than I had anticipated. Matt and I have both concluded that Reuben is still our most challenging child, and that caring for him pretty much balances out caring for the other four (Owen, Leah, Rinnah, and Krassi). In many ways Krassi has fit his way into our daily routine. He really is, as his file indicated, a very calm child, and we have already noticed that he is quite inquisitive, enjoying feeling and handling and banging the baby toys that are amply available for him. This is more than can be said for Reuben. ;) Reuben needs much more prompting to engage with play - yes, when he does, he engages at a more advanced level than Krassi does, but we are so pleased with the way that Krassi does engage at the level he's at. Seeing this makes me think that there is a lot of room for growth and development in him.

I already wrote about his little bursts of laughter on Sunday morning, and we've seen more of those throughout the week. One thing that I really enjoy is how delighted he is to be placed back in "his" spot on the living room floor. It's familiar to him, and is a place that he enjoys being. My daily life is full of little tasks that have me moving here and there throughout the house, and between my growing belly and his spasticity, it's a challenge for me to carry him along with me for any period of time. (I had wanted to use a carrier periodically, but am not sure yet how his limited flexibility will take to that, so we will likely be looking for other ways for him to get around the house more.) So in the meantime, his days are comprised of the steady banter of siblings and mom passing through every few minutes to talk or snuggle or play, and he seems quite content with his life.

Reuben seems to understand at some level that Krassi requires more gentle treatment than the others do.

Sometimes Krassi sits up on the couch for a change of scenery. Here's Leah snuggling up with a book near him.

Rinnah spends a LOT of time near Krassi. On this day she was one at a time bringing the little plastic animals down the stairs and over to Krassi. "Just a minute Krassi! I go get one more!"

One thing from his file that we have found to be not true of him here is that he "rarely smile." We get plenty of smiles out of this boy! Some of them are a response to our play and affection, and some of them just seem to burst out of him. I grabbed the camera one day when he was particularly happy. By the time I was ready, the moments had passed and he required a bit of verbal interaction from me to keep it going, but this is a sample of what he sounds like happy.

In general, as the week has gone on, we've had less of the whimpering and more happy sounds, or else just quiet. Quiet sounds so beautiful when contrasted with whimpering.

This isn't to say the week hasn't been without challenges. I mentioned with excitement that he'd had two dirty diapers one day - a relief to me after how constipated he'd been the first week. However, that trend continued, until Wednesday there was a stretch where he was going hourly. Yikes! That night we put him to bed wondering what to expect (we'd woken Wednesday morning at 4am to Reuben with such a diaper that we had to strip him in the tub, rinse off his back and belly nearly up to his armpits, scrub down the tub, and put him back in for a bath, and then two hours later Owen came in to tell us that his (and Krassi's) room stunk, and sure enough, Krassi had a big one, too) and were a little apprehensive about what this night would bring! I did a sniff test at 10pm before going to bed myself, and sure enough, the K-man was dirty. So up and changed him and put him back to bed, and he STILL work up in the morning dirty and leaking out. Yikes again! Amazingly, things slowed down over the next few days, and today he had only two dirty diapers. We like that. ;) The system's moving, but not at record speed. [sigh of relief]

I've been a little more ambitious than I had originally planned about going "out" this week. Sunday and Monday went so smoothly that I told Matt I thought I could handle taking all five children to Reuben's therapy appointments on Tuesday morning, thus freeing him to continue getting his work done. One very nice thing about the therapy center we go to is that they have been very accommodating of our family and for this fall when Reuben's schedule expanded from 2 hours to 5 hours per week spent there, arranged for us to have a small private room where we can spread out a bit and relax. The older two can get their [home]schoolwork done in a quieter setting than the lobby, and it also provides us a less stimulating place to spend time with Krassi. Knowing that we had this quiet space played a huge role in my being able to venture out. And it worked! The morning went very well. Krassi does quite well in the van, and it's always so neat to bring him back home after an outing and see how excited he is about being back here.

On Wednesday he had a short visit with our family doctor. This, too, went well. He got a little worked up about the blood pressure test, but the nurse was very perceptive and just stopped and removed the arm band before it developed into anything. So, that afternoon we decided to brave our weekly library trip. I figured it would be similar to the out and about time that we had in Bulgaria as he would spend most of his time in the stroller, and Barb (my mother-in-law) comes with us to the library, so I'd have an extra set of hands for getting small people across the parking lot. The whole outing went great until the Diaper Change. This was the beginning of the hourly dirty diapers, and I didn't want to put him back into the van with a dirty diaper. So, without thinking about it, Krassi, Rinnah and I went into the little bathroom in the kids area to change him. All was fine until shortly before we finished, Krassi began to panic. I immediately realized that there were many similarities between the small, white tiled, echo-y room that we were in and the small, hard surfaced room that diaper changes occurred in at the orphanage. Even the waist-height hard counter is similar. Poor boy stiffened up and began screaming! I put together pretty quickly what I figured was happening, and we got out of there ASAP and he eventually calmed down with me holding and singing soothingly to him (note: even the fact that I am able to soothe him that way is amazing to me! The plane ride home was pivotal for that.)

Despite that rough afternoon, the rest of the day was beautiful. I think he was VERY glad to be home.

Thursday we went again to therapy, and were very excited to get some paperwork done to start Krassi with a PT evaluation next week. Tuesday afternoon, after our morning at therapy, Reu's PT (Brian) emailed to say he had just that morning heard that Lori (the other PT who he thinks would be a great match for Krassi) had an opening on Tuesday mornings!!! They're often booked out for months, so to hear that there was room, and that Brian had asked them to place a hold on that spot for us was super exciting! I had originally planned to hold off on therapies for a while to give Krassi some solid time to bond with us, but realizing how much progress he's made in the past year made me reconsider, at least from the PT side of things. I don't want him to lose the momentum that he's got going from what they began at his orphanage with him last fall. I expressed some of my concerns to Lori, and she smiled while telling me that she can work with him for a long time from the back, letting me still be the one in his face, and also letting me learn how to handle him, how to work with him. She laughed sharing that sometimes she'll have worked  with a child for months before needing to move to the front, and at that point seems like a complete stranger to the child! ;) I can handle that - all the benefits of PT without the drawbacks of bonding confusion! I'm very much looking forward to this next Tuesday.

Friday was a beautiful weather day. We had no appointments, so decided to go for a short walk (an obsession of Reuben's) to change things up a bit. I really love having Krassi in the pictures of my kids playing out in the yard.

Okay, no Krassi in this one, but sometimes the Rinnah ones are too much fun to not share!

Krassi watching Leah...no, Krassi nearby while Leah is in the leaves. He's not particularly engaged, but not unhappy, either. He lets us know when he's unhappy.

"Must push those sleeves up!" Krassi has a 'thing' about having anything touching his arms below the elbows. Winter and mittens will be a challenge with this boy, I think. But look at how well he's keeping that hat on! On one of our colder walks in Sofia he was so distraught because of that hat that we just removed it and figured his ears would survive. They did.

Walking down the wide bike path that runs along our property and the frontage road. Little bit smoother ride than the sidewalks in Sofia! (Doesn't look as pretty, though, as the cobblestones do!)

And back up into the yard to check out Daddy's progress. With the slightly warmer weather, Matt and Chad were able to get the last of the panels onto the stair bump, and today he started putting the battens on. Not a lot of progress, but some. The inside is still looking at a LONG way to go.

Last night, too, we finally got all of the kids together for some photos on the couch. Notice they're all in their jammies because I kept forgetting at times when they had real clothes on! But, here, for your viewing pleasure, are some photos of all of our children. Well, all of the ones that are visible. Since I was taking the photo my growing belly didn't make it into the picture. ;)

Our five children, from oldest to youngest.

Little mother Leah, snuggling whoever's near her

These are funny. It looks like they're having a lively conversation, which they're obviously not, since they're both non-verbal, and don't even understand each other's language if they were verbal.

It looks like they're sharing a fantastic joke, but really what they're sharing is the contagiousness of laughter. Which, I guess is a pretty universal language that they are both rather fluent in, come to think of it!

We lost Owen and gained Daddy.

Look how strong Krassi is getting! He got himself from the position in that last picture up to the position he's in in this one!

Something more to laugh about, apparently.

Nightmares can be funny

I'm too tired to post about the week with Krassi so far (briefly, we're tired because of Reuben, not Krassi, so nothing out of the ordinary there, and secondly, constipation is no longer Krassi issue - we're hoping after the afternoon he's had that he can make it all night without a major blowout. Or at least until 6am!)

But just for comic relief, here is a recap of the nightmare I had two days before we left Bulgaria lifted from an email I sent to Matt in the early hours of the morning as a way to clear my head and go back to sleep. Enjoy. ;)

~~~

I just woke (it's 3am here) frm the msot horrible nightmare.  We were trying to get through the Sofia airport, and our baggage was awful - we'd packed badly and planned poorly for what to check and what to carry. And we had increasing nmbers of people we were responsible for - including a small adult who we tried to wrap up tightly inside of a mattress roll (Dondi loves the bed here and we've been joking all week about bringing one home!) and then realized that probably wouldn't fly so took her out and decided she could sit in Reu's seat with his ticket and you could hold him on your lap (since by now you and all the kids and Krista and *Davey* are all along as well as Calvin and his younger brother from Owen's soccer team. They had to weigh the kids, too, before they'd let themm through security and Calvin just made it. [note: I have twin cousins, Bobby and Davey. Bobby is married to Krista. Davey is not. Calvin is a boy from Owen's soccer team. I have no idea if he has any brothers.]

So then I realize our plane takes off in 30 minutes and we haven't checked in and I don't know where to go to do that. I check one rom, but it's the pharmacy concourse, so thankfully find a technician (who looks surprisingly like the vice-consul and speaks great English) who informs me I have to go all the way back to the entry to check in and doubts I'll make it in time. In the meantime, you [Matt] have been trying to fill backpacks and bags and load them onto small children and we have endless piles of stuff. The tech finally says he'll just take care of it on his little hand held device so I don't have to get back, but it's now 10 minutes to take off and we're still just through the baggage check area and trying frantically to pack things up. Reuben's shoes are untied, I don't know where Leah and the big boys are (with Krista??) and we have a 3'x3'x1' cardboard box we're trying to cram full of all the rest of the stuff we need and we're hoping we can use it as a carry-on...whose carry-on? we don't know, but we're throwing things into that box: a small wok, the pizza peel piled high with riced potatoes and gravy, the pink sandal that Rinnah likes to wear but is still too  big (can only find one), baby socks, Reuben's clothes, tart pans, we decided to leave the chicken and rice. Shove, shove, shove, pack, seven minutes left - shove the small singing telephone and two other toys into Davey's backpack which has suddenly shrunk to be the size of a camera case, so put the rest into the front zip chest pocket of his coat, go go go...

And then I woke up. No idea if I caught the flight or not. 

~~~

The best thing about this dream was that I woke from it not in a cold sweat, but immediately delighted by the absurdity of it and all the random pieces of my week that had managed to find a place in there. But no idea where the wok came from.

Maybe tomorrow I'll update a bit more on what's going on here at home with our five children. ;) 

Photos have been requested

Because some of you are asking, ;) here are a few photos of the first two full days home.

First thing Sunday morning was Krassi's introduction to the whole family (and your introduction to what my hair looks like in the morning if I go to bed with it wet! Bathing after the 24 hours of travel was critical. Waiting for the hair to dry before hitting the pillow was not!)

I doubt Krassi's used to having 2 year olds doing gymnastics next to him on a regular basis!

"Krassi, this is your Baba Glewwe!" At the word "baba" he lit up and was thoroughly delighted in Grandma's presence for the rest of the time until supper. How neat that Grandma will be moving in with us as soon as we get her space finished!

And Krassi continues to eat like a champ, and today had two dirty diapers (yay!!!), so I think we're past the worst of the initial constipation. Now it's just maintenance. ;)

I think someone likes being home

We all slept pretty well last night - even Reuben.

Krassi slept in a pack-n-play in his and Owen's room, because even though we've never witnessed the "pulls to standing in his crib" that has been reported, we didn't want that to happen and have him fall out of the lower bunk - the side rail won't keep all of him in. But this way he's still in his room and Owen, who he recognizes from all week, is there in the room with him.

He's not alone.

And when he woke up this morning he was REALLY not alone. All of his siblings just surrounded him, showering him with their toys and blankets, and pats on the head or the back, or kisses - whatever they could think of. And it was noisy. ;) It started getting a little overwhelming and Krassi was clearly concerned, so we moved into his bedroom and laid him on the lower bunk with either me or Owen nearby, but not touching, and a steady stream of one or two of the other kids, but it was still less intense than the beginning.

Matt took our four youngest children to church with him this morning and Krassi and I stayed home this week. We spent some time on the bed, with me moving in and out of the room with little things I was doing, but always talking so he would hear my voice. He ate something for breakfast, which he wouldn't do when everyone was here. Then I wanted to move into the living room so I could unpack and sort some things before everyone got back, and Krassi laid on his belly on the floor next to me with a bucket of toys nearby.

After we'd been doing this for about an hour I suddenly heard a sound - I looked, and sure enough, it was a breathy little laugh and a big smile! I got the sense that at some level he understood that he was home - that he was at a place that was good.

A few minutes later I heard it again, and now it's been four or five times where, independent of my trying to get a smile or a laugh out of him, all on his own, spontaneously, he's smiling! And the last time he was laughing out loud. A lot. In the hotel we'd get that between supper and bedtime when we would play with him. This is in the morning and all on his own - just happy with his circumstances.

So much joy in this mama right now!

Reu 2

Reuben did set a new record yesterday.  He topped out at 12 seizures.  Three tonic clonic and 9 partial seizures.  The last two of each kind were especially troublesome to me.  His last T/C came as we were out taking a walk and for about 30 seconds he didn't want to walk, but kept standing still.  Soon enough as his legs started buckling underneath him I realized it was because the tonic part of the seizure was hitting.  I lowered him to the pavement and kept my hand under his face so it didn't scrape on the pavement and he twitched.  Typically these last less than a minute and he takes a deep breath and things get going again.  This one lasted closer to 2 minutes and his face was very splotchy and lips were losing some color and I was starting to wonder when it was going to stop and how I was going to call 911.  Thankfully it did stop, but he was so wiped out that he couldn't keep his eyes open or his head held up on his own for the next 30 minutes.

He did perk up enough to eat supper and then was very perky and not at all interested in going to bed at bedtime, but just sat or crawled out of his bed screaming for Mom.  At one point as Leah and I were trying to read together and watch Reu on his camera, he sat up and was clearly having a partial seizure.  This one lasted probably 4 or 5 minutes and his heart was racing and his teeth were chattering.  Again, I was wondering if this was going to stop or I would have to administer his "rescue" medication (that we have never had to use before) or call 911.  This was about 8:15 (4:15AM Bulgaria time) and I knew that Andrea should be awake, so I tried calling via facetime to Dondi's phone.  I partly just needed to talk with Andrea about what to do and partly that that Reu may calm down a little bit with getting to see Mom.  He was ecstatic and as soon as we were winding up the call where she told him that she was soon going to be getting on the plane to come home, he started pointing out the window (hard for him to grasp a 24 hr + travel time)

Andrea and I figured it would be a good idea to have something in place in case the seizures continued or worsened as the night went on, so I called Joel and asked him to keep his cell on all night so I could call him if I needed him to come and be at the house with the girls if I had to go with Reu to the ER.  After that call, Reu and I headed upstairs.  I figured for one night, I would just let him sleep in all night in our bed so that I could monitor him more closely and hopefully it would be more calming for him than going back in his own bed.  Thank you to those who were praying for Reu and for myself.  He fell asleep in about 15 minutes and slept fairly well the rest of the night and as far as I could tell did not have any seizures.  We will see what happens today!

Lord willing, Andrea and Owen and Krassi and Dondi should be landing in about 8 hours.  It will be so good to have them back home (or in K's case home for the first time).

Before trying to laying Reu down for bed the first time last night, I had been playing and singing some of my favorite hymns before bedtime and this is one of the ones I sang and was clinging to during the evening and night.

How Firm a Foundation:

1. How firm a foundation, ye saints of the Lord,
   Is laid for your faith in His excellent word!
   What more can He say than to you He hath said—
   To you who for refuge to Jesus have fled?
2. “Fear not, I am with thee, oh, be not dismayed,
   For I am thy God, and will still give thee aid;
   I’ll strengthen thee, help thee, and cause thee to stand,
   Upheld by My gracious, omnipotent hand.
3. “When through the deep waters I call thee to go,
   The rivers of sorrow shall not overflow;
   For I will be with thee thy trouble to bless,
   And sanctify to thee thy deepest distress.
4. “When through fiery trials thy pathway shall lie,
   My grace, all-sufficient, shall be thy supply;
   The flame shall not harm thee; I only design
   Thy dross to consume and thy gold to refine.
5. “The soul that on Jesus doth lean for repose,
   I will not, I will not, desert to his foes;
   That soul, though all hell should endeavor to shake,
   I’ll never, no never, no never forsake.”

Reuben

After a pretty good week for Reuben (until today, he'd only had one seizure), he's been having a rough day. I just got an email from Matt, and halfway through the day Reu's already had six seizures. He typically averages, over the course of a month, one per day. The most he's ever had in a day is eleven. I think eight was the runner up. That means with 12 hours left of this day, he's potentially gearing up for one of his roughest days since the seizures started three years ago.

Using Dondi's phone I've been able to facetime a few times this week. This morning was the second time with all three kids, and midway through the call I saw a seizure hit. I called for Matt who was right there to be with him through it, but as many times as we've seen him go through that - hundreds of seizures - it was tough to see it and not be there with him through it.

For those of you who pray, would you ask God for the mercy of holding that little boy's brain steady? He has only once been hospitalized because of seizures (and that was largely because of the unknowns at the time of his initial diagnosis), but it's always a possibility. His chromosomal abnormality (ring (20) chromosome syndrome) is characterized partly by difficult to manage seizures that gradually tend to worsen over time. His normals are always a moving target, and a string of seizures like this always heightens our awareness of the possibility of something escalating beyond what we are able to manage on our own.

I'm ready to be back home. :)

Tidbits from our last day in BG

We get to go home tomorrow.

So tonight I get to finish up my last chocolate covered caramel from a box a friend gave us for the trip - it's been my routine every night to sit down with my bottle of water, a chocolate (or two on longer posts) and skim through Dondi's facebook photos to remind myself of the day!

In eight hours we'll wake up and spend our last hour getting ready for our 5am local time cab to whisk us away to the airport.

I doubt I'll sleep much. ;) I had a doozie of a dream/nightmare last night about getting through the Sofia airport, plus our experience last time (did you know that Bulgaria practices daylight saving just like we do in the US? Matt and I do...) makes me doubt that I'll be sleeping deeply tonight.

We did some good walking and sight seeing today, once again enjoying the adventure of pushing something with wheels over the sometimes rugged terrain. It was chilly, and I finally felt it was worth it to have brought along a winter coat for Krassi. I had a hat, too, for which he had an extreme distaste, but we compromised - no hat, but I wouldn't let him push up his sleeves which is something he is pretty determined to do with any piece of clothing he wears. (Mom - Dondi thinks some long sock-like mittens with a string to keep them up may be the thing for days when bare skin is not an option in MN!)

Poor Krassi's tummy was upset after eating in a plaza a ways from the hotel (although the system has been moving, he's still pretty constipated, and sometimes eating triggers that for him as things settle in) and poor guy hit 3-4 times on the quick walk back to the hotel when he was so uncomfortable that he cried real tears. :( Stretching out on the big bed helped, but he wasn't too happy.

This afternoon we found out what the excema-like spot on his non-dominant arm is from when we saw him start chewing on his arm while [not] playing with toys on the bed. But I still have to say that even with that, what we've seen of him this week is that typical "institutional" self-soothing behaviors are not a significant part of his routine. Still, he's already slightly tolerant of sitting close to mommy - more than he was at the beginning of the week, though I wouldn't say he likes it or is in any way comforted by it. But with practice he'll get there. ;)

It was so good to get Toni's phone call this afternoon saying that she had the visa and was on her way over. This is the last piece necessary to make it successfully home. She met up with us at the hotel restaurant, and brought tears to both my eyes and Dondi's at the way she could bring smiles to my boy's face. He is so hungry for the Bulgarian language after a week of being stuck with three strangers who don't know how to talk right! He's like our Reuben in that way - a very high level of comprehension of spoken language in comparison to his ability to express himself in that language. (Reuben has a vocabulary of roughly 20 words or recognizable approximations at the age of four years and three months.)

Toni has such a sweet heart for these children, and it brings her such joy to see them going home with a family - a chance to live and love and be loved. And Krassi certainly responded to her sweet-talking. Tonight we didn't get our regular smiley happy time with him - I think he used it all up on Toni! But it's only fair - she's done a lot of work to get him to where he is today - and we've got the rest of our lives to earn the right to be the recipients of the smiles and delight that we know are inside our son.

Tomorrow's going to be a long day. It will be 24 hours after we wake up in the morning before I finally get to see my husband (this is kind of pathetic, but in the 13 years that we've been married, this is the longest that Matt and I have been apart. I've been apart from my kids for a week at a time (Reu and Rin only once when Matt and I were here in BG in the spring), but NEVER that long away from Matt. I'm ready to be with him again!!) and Krassi gets to go HOME. He gets to go home! Krassi has a home! With a mommy and a daddy and two brothers and two sisters (so far - who knows who's waiting inside!) and three cats.

Ice cream is no good

After a supper of pizza (to follow our lunch of pizza) we decided to share a dessert from the restaurant that Matt and I had really liked back in March - a chocolate souffle. It's about the size of a muffin, and the waiter wasn't too sure when I told him we were going to split it, but I told him I had ordered it before and knew what I was getting. It also comes with a tiny dish of vanilla ice cream. Just perfect - and all of us felt like we had just the right amount. Even Krassi. I tried offering him some ice cream, and it was promptly refused. Tried again, like worked so well with the sippy cup, and once again, no good. We've noticed that he tends to like his food room temperature; too hot or too cold is no good.

Bummer for him!

New skills

Apparently today is the day for short snippets throughout the day. ;)

More good news today is that we've finally had some "movement" and our poor boy is not quite as constipated as he's been seeming for the last 24 hours. I'm sure more would be good, but we are SO glad to have had something before we get on the plane.

And much fun is that we were able to encourage Krassi to drink juice from a sippy cup this afternoon! In an effort to keep things moving, we ordered up some apple juice to go along with the rest of our mini arsenal, and decided we'd get a lot more into him via cup than spoon. He refused the first attempt, pushing it away with his hand and mouth tightly closed. Dondi encouraged me to try again, so I did, and managed to drip a little bit into his mouth while holding his hand out of the way. After a few more attempts, we got to where he would open his mouth voluntarily, and by the time we were done, the hand wasn't coming up at all!

This boy is a quick learner. Seeing this happening this week is super exciting to me - just wait until this boy gets home and has so many more opportunities to grow and learn! Everyone we've talked to at his orphanage comments that he has so much potential, and being around him both that week back in March and this week it is so obvious that there is much room to grow in our oldest son.

Embassy interview complete

One more hoop jumped through! In many ways, this was the last step, though I'll actually feel like the business of this week is over when Toni picks up his visa tomorrow and delivers it to me along with the sealed packet of documents that we'll need when we go through immigration in Chicago on Saturday. We will have supper with Toni tomorrow night and receive all of the documents that we need. *Then* I'll feel like we're on our way home.

Having spent an entire semester studying the Finnish Embassy while we were in graduate school, I had a heightened sense of excitement about being in a "real embassy." ;) I know that sounds kind of silly. ;) But there was a definite sense of solemnity about the whole business that was satisfying. Before we could even enter the building we had to show our passports at a little window, and were asked, "Where is Matthew?" I replied that he was back in Minnesota with the other children. That was satisfactory. Then we were allowed in, and went through a security check just like in an airport, and then through a courtyard to another building where we had to check in. I love the notion that here in Bulgaria I was standing on what is considered US soil.

The interview itself was a short formality, and mostly was helpful information about what to expect when we get back into the US. And then back to Bulgaria we went!

I think I hear Owen and Dondi getting off the elevator with our pizza. ;) Late lunch today.

Negative!

Just got Krassi's TB blood work results back, and it's negative, so we're all set to get to our Embassy interview this afternoon which is the last thing we need to get to go home!!!

Wednesday

I'm so grateful for all of Dondi's photos if for no other reason than it's the only way I can remember what's happened each day! ;)

For example, I forgot that this morning was when Krassi had his first bath with mommy. ;) You can't tell from the photo necessarily, but he seemed to enjoy it quite a bit. His baba told us back in March that he loves his baths, but there are so many different factors - much larger tub (he usually got his bath in what was essentially a laundry sink), different person, and thus different methods...But Dondi encouraged me to go for it, sharing how much her son with CP enjoyed his baths because of the relief it gave his muscles. The bath was a nice reprieve for him - he had seemed really comfortable with us today until we were coming back from breakfast and I think reality of the change he's going through hit him again, and the whimpering really started up, turning rapidly into full fledged crying with real tears. The bath ended up being just what we needed.

 After the bath we took a walk. He seems to really enjoy these times. We like them, too. It gives him some relief from the intensity of being with us and only us ALL of the time. While he's still with us and hearing our voices, he's also hearing the more familiar sound of the Bulgarian language around him, and he seems to find comfort in that. He seems to be quite an intelligent boy, and he absolutely knows that these people who he's with don't know how to talk right. ;)

Owen is really taken with the Roman ruins, and wanted to walk back past them again. This time as we crossed the street we took advantage of the underground crossing (the one with the "nicer" ramps that are at least possible to navigate) and came out a different way, and found that there are what appear to be restored ruins integrated with the underground crossing! Very neat.

Hi, Dondi! Now everyone knows you really were in Bulgaria! ;)

 After lunch (a chicken/carrot/something baby food combo given to us by the orphanage and prunes that we had purchased at the market for Krassi, and 1 lv. pizza slices for the rest of us) we headed back to the hotel for some down time. We are in the room with the balcony and the curving roofs on the top floor.

Here are my boys wearing matching socks again. ;) When I first saw this photo I smiled at the red striped socks, and then looked at my boys' legs and got all teary. Owen is a small boy for 8 years old (though quite fit, I must add - probably because he knows how to WORK!) but he looks like a monster next to his older brother. I don't expect Krassi's legs will ever be as sturdy and muscular as Owen's because of his CP, but I am very excited for the day when there is some more meat on those bones!

Once again we had Krassi take a rest at what is supposedly his nap time, and once again he didn't sleep, but just lay whimpering in his bed. Today we got him out after only an hour, and spent some time snuggling on the bed. Part of this is that I am so very exhausted that I could hardly think, so it was nice to just be close to him, but not actively trying to engage with him. After a bit of restful time together I fed him his afternoon snack. He's been taking some chocolate Pediasure from the spoon today, and we combined that with the rest of his prunes to encourage some movement. ;) One really funny part of the afternoon was when Krassi was trying to "tickle" Owen. Dondi's been tickling Owen to get him to laugh because of the way Krassi responds to Owen's laughter, and it was so funny to see him trying to tickle Owen himself and to see his response when Owen laughed. Owen really hammed it up, too. Krassi's not the best tickler yet, but he sure got some good incentive to keep trying today!

In the late afternoon I was able to facetime with Matt and the younger three, which was just delightful. Reuben looked so delighted to see me, and I heard Rinnah comment, "Rinnah's mommy!" We tried having Krassi sit with us, but he was very agitated, and eventually worked up nearly to tears again, so Dondi took him and laid him back down on the big bed. Over the next half hour he passed some gas, which we're attributing the discomfort to. He's got to be filling up in there!

At supper he once again ate like a pro - this time some "3rd foods" lasagna baby food that I'd brought from home - lots more chunks in it than most of what we've been giving him, and a lot thicker, and he did great at first, but them seemed uncomfortable again, so I slowed down on the food and periodically gave him either Pediasure or baby fruit thinned with water (liquids, liquids!) For a while I thought I was going to have to take my meal upstairs with him, but he managed to settle down a bit and make it through our eating of our meal.

Evenings have always been our best times with him. He's kind of sleepy, and so relaxed, and we've gotten some really sweet smiles. After last night's success with massaging his legs I decided to try again tonight, and again it was a hit. He particularly loves having his feet rubbed. ;) He's got such soft, fleshy feet - feels like all of the fat that's missing on the rest of him is pooled in the soles of those feet. ;) Dondi's experience matches my theory, that they simply have not been used, so have no calluses built up on them.

By far the best part of today, though, was hearing my son laugh!!! We've seen lots of smiles, and once or twice a sound of contentment, but we were actually getting giggles out of this boy tonight! Is this not the most beautiful picture! We got smiles back in March, but momentary fleeting ones that we had to capture out of video. Tonight we had ample opportunities to catch smiles on still shots because they were frequent and long lasting. Isn't he beautiful wearing that smile! I am so excited for this boy to learn what it is to be safe and to be loved. He's getting a taste of it here, and it seems like he's thinking it's going to be something that works for him.

Accessibility

Look! A handicap accessible street crossing!

And although I post it laughing, because this would never fly in the US, it really does make navigating with a stroller easier when they raise the cobblestones up a bit to get you up the curb. Now that I'm here with a stroller I'm noticing more things like this than I did when it was just me and Matt walking around back in March. Sometimes its a small bit of wedge-shaped asphalt, sometimes the sidewalk slopes down, sometimes the street pulls up as in the photo above, but the places where there IS something instead of nothing is really nice.

Socks

Forgot to mention that it was of the utmost importance to Owen that he and Krassi wear matching socks today. ;) I have a feeling that the rest of the week will be the same since they have the same set of socks, just different sizes. Today was "green" day. ;)

First full day free!

My laptop hasn't switched to Bulgaria time, which means I can very simply (without doing any math!) see what time it is for all of you reading. ;) So, even though many of you aren't even awake yet, I can give you the update on how much of our Tuesday has gone so far.

First of all, sleep last night was pretty good. It takes Krassi a while to fall asleep. He makes little noises and plays with the fabric on the sides of the cot. We've noticed that he doesn't appear to have any common institutional self-soothing habits (rocking, scratching/biting himself, etc) and the only thing we've seen is once when he was awake during the night (HUGE crack of thunder!) Dondi glanced and saw him stroking his hair - his baba has said that she does this and he likes it, and our best guess is he duplicates it himself when she's not there. But that's the only time we've seen it, and its very gentle.
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Well, many hours later I'm going to try to finish this post. I was so wiped out that I had to lay down instead of post while Krassi was resting this afternoon! So here we go again.

This morning we got to sleep until we weren't tired, waking up around 7:30 for all of us. We quickly got a little bit fixed up (not out of jammies, but not obviously bed-headed anymore!) and headed down for breakfast. Since Krassi didn't eat a lot yesterday, nor have anything straight up liquid to drink, we wanted to get down and start the day with food sooner rather than later. We started with the peach baby food that had been so successful the day before, and had terrific success. He was happy when I mixed it half and half with yogurt, and I even got three little bites of soft scrambled eggs into him! We tried a bit of juice on the spoon, with less success, and are just taking comfort in the fact that he still seems to be wetting his diapers. That baby food has a fair amount of liquid in it. Anyway, we were all very pleased that we were able to get food into him and that we were able to get some variety.

At 9:30 Martin and Dani picked me and Krassi up to go back to the clinic for his blood draw. Dani is used to being the "bad guy" so when it was time to stick him she sat right down in the chair and reached for him so I didn't have to hold him during the owie part, but just got to do the snuggling afterwards. He is still pretty resistant to snuggles, partly because his CP makes it difficult for him to snuggle up and relax while being held, but also partly because the whole idea of snuggling is a pretty foreign thing. But of all the blood draws I've had to do with my children, this was by far the easiest. By far. Reuben is such a hard poke - often, even at the hospital, he will need the needle stuck in two or three times before they actually find a spot that works. This was so much easier. In, done, and out.

Then we were free for the day! We decided to take a walk - Dondi gave us the stroller she used for her son Caleb when he was younger. It's essentially an umbrella stroller, but much sturdier, and with much better support straps - clearly made for an older child. I am LOVING having Dondi along. Besides the fact that it's nice to have another adult around to help with choices (should I try some more water or just leave him be?) her years of experience with CP have been invaluable. She just *knows* what's normal for a kid with CP where I would be worried or wondering. She's not afraid to manuever him, and thinks of things like after we've been walking for a while to alter his position just slightly so he doesn't have any "hot spots" that could get sore. So many things that I could probably figure out eventually through trial and error are just second nature to her. I can't explain how grateful I am to have her along! (Thank you, Jared, if you're reading this!)

Navigating the city with a stroller is an adventure. ;) Here is a photo of a middle of the road sidewalk. Not the best, but BY FAR not the worst. Most of the corners don't have ramps, so we bump Krassi up and down.

And how about this? Some of the busier streets in the center of the city have underground crossings - you go down a flight of stairs and under the street, and there are little shops along the tunnel - they're rather pleasant places - and then a flight up. This isn't a problem, because they have handicap accessible options...

...or something like that. Can you imagine trying to come down this in a wheelchair? This is how we did it with a stroller:

It worked okay, but I was very glad to have Owen there to guide and support the front wheels. Those ramps are STEEP!

And this was the best ramp we found. Dondi and I were both very touched when we came to another crossing that had metal tracks - one side was fine for the wheels, but the other track was too narrow for the double tire. We tried, the three of us, to guide him down, and had just started when a man came over, and with very little English said that some of these crossings had elevators, but he didn't know of one here when we asked where. He offered instead to carry Krassi down for us, and proceeded to scoop him up just like you would cradle a baby, and stroller and all carried him down the stairs for us. Dondi and I were both tearing up - it was so neat to have a complete stranger see our predicament, recognize that the infrastructure doesn't cater to someone like Krassi, and just step in and fix the situation.

Many times, too, especially on shorter flights of stairs, Dondi would pass her camera to Owen, and she and I would each take a side of the chair and up or down we'd go. Nice that he's a little man!

Me and Krassi in a lovely plaza near the important government buildings in the center of the city.

On our way back to the hotel we stopped at a little pizza window shop very like the one that Matt and I ate lunch at every day in Pleven. For 3 leva we can get three nice big slices of pizza - one for each of us. It's surprisingly satisfying, and not overly greasy, and since a lev is worth slightly less than a dollar, it's a very inexpensive lunch. We followed it up with an orange at the hotel, and it's a great meal. We had also stopped this time around at a larger grocery since the small market Dondi and Owen ran to while Krassi and I were at the clinic didn't have any fruity baby food! Even at the larger market we couldn't find peach (oh no!) but grabbed a variety of other similar ones, based purely on the photos on the front. Peach/banana/rice and prune, and apricot/pear...we think...as well as a vanilla pudding. Basically, we're looking for anything that will taste good so he will eat it!

When we got back to the hotel, it was a little later than he usually eats, so we decided to use the sauce of hunger to try the chicken/carrots from last night again. This time we didn't heat it up at all, and I mixed it with a bit of the peach that we still had left over, and...success!! He finished off the whole small size jar of chicken/carrots, as well as the half of a small jar of peaches, and in the last bit of the peaches I added about a tablespoon of water and fed him runny peaches, and in that way got that much more water into him! Once again he had a nicely wet diaper, so we're still having success at keeping fluids moving through that boy's system. Toward the end of the meal he started getting agitated, and quickly escalated to full tears and loud, painful sounding cries like we hadn't heard since leaving the orphanage. Oh, so sad! So hard to hear! And no idea what was wrong. Is he constipated? Does he want more food? Less food? Different food? Is he simply too overstimulated suddenly? Is there pain elsewhere?? We quickly took him out of the stroller and laid him on the bed where he continued to cry, and I tried to soothe him (but not too much in case intense personal interaction was what was triggering the outbreak) and he let out two small burps, and slowly was able to calm down with me stroking his hair. Poor boy.

After that, we changed him and laid him down for the afternoon nap he supposedly takes every day. He did not sleep. He lay quietly, whimpering here and there, for nearly two hours. He was never upset, but never slept, either. I started thinking about our son Reuben, who, although developmentally is around 18 months old, is actually over four, and is starting to not need his nap every day. I'm thinking its very possible that this nine year old boy, although developmentally very young, is physically old enough that he doesn't need a nap. It's very possible that he "naps" every day by simply laying in his crib whimpering softly to himself. Regardless, we decided that maintaining some routine is a good thing this week, and since too much face time with us does seem to get to be too much, it gave him some mid-day relief from that, and sure enough, when we got him up (Owen came and woke me saying he thought Krassi sounded ready to get up!) he was seeming more ready for our company.

In the afternoon we took another walk, knowing that the weather is not going to be good for that Wednesday or Thursday. We took a slightly different route so I could show off more of the city to Dondi and Owen, and stopped to give Krassi his afternoon snack near the huge cathedral.

Once again, he ate like a champ. We had packed some prunes this time, figuring if he just wouldn't take them we'd have supper sooner rather than later, but that wasn't an issue. Again, I added some water to the prunes, and in that way managed to get not only some food but also water into him.

We did a little bit of fun shopping this afternoon, with both Dondi and me finding some neat things to bring home to our girls. ;) And then back to the grocery to make a deli stop for supper things (and Owen opted for another piece of pizza for his supper!)

After supper we spent some time all hanging around on the bed again. Owen takes such pleasure out of being with his new brother. We brought out the singing telephone, and it was a relative hit.

We also decided this was a good time for Krassi to "open" his birthday present from Leah. She picked this out and paid for it herself back in June, and asked me to bring it along when I went to pick him up.

Lucky boy got his own set of four snoopy toothbrushes, AND the bonus of paper to crumple. She remembered how much he liked the feel and sound of paper when Matt and I were there in March, and she's been insistent that the wrapping paper is going to be a good toy to bring on the airplane. And we definitely will. We also had a funny moment when I was talking to him about his new name, jokingly using the way that the Bulgarians pronounce it and spell it in the Cyrillic: "Glue." (In all fairness, we are often "Glue" or "Gluey" in the States, too, because only people who are familiar with the name know that it's pronounced, "Glevee" rhyming with "heavy.") When I said his name out loud, he smiled. Hm. This was kind of a surprise to me! So I said it again, and he grinned! And I said my full name, and he grinned again! As I talked with Matt (thank you, Jared, for giving Matt some hints on using facetime! I don't have an iPhone, but Dondi does...) this evening (afternoon for him) he said his first thought was that Krassi's baba must have been talking with him about us, so the name was familiar to him. Is that not an incredibly beautiful thing? She did her job well of preparing that boy as best she could for the huge changes he's going through this week.

Then, while Owen took a bath, I changed Krassi and with some guidance from Dondi, used some lotion and massaged Krassi's legs. He was so happy about this! Huge smiles and sounds of pleasure and delight! I told him that this is a little bit of what it's like to have a mommy and to be loved - to have someone who cares about your sore muscles and gently works some of the tension out of them when you're not able to do it on your own. He was an incredibly happy boy.

And, apparently, a pretty relaxed one, too, because I don't think it took more than three minutes after laying him down in his cot for him to be sound asleep.

Tomorrow we have a quiet rainy day ahead of us. No appointments, no where to go. But I'm guessing I'll still have photos and stories to share tomorrow night. If nothing else, *I* want them so when these days are gone I can still remember some of these precious first times.