Just for fun

Yay! Look who's loose enough after botox injections to ride on mommy's shoulders!! He thought this was as much fun as the picture communicates!

Spring has (prematurely) sprung! Owen, Leah, and Rinnah had the first picnic of the year today.

It's really too warm for the sap to flow well (there's a story in there I may or may not ever get to), as you can see by my oldest daughter's attire. I don't know that *I* was quite ready to get a sundress out, but I was okay with her wearing one. It was so nice we all went along to help Daddy collect the little bits that ARE flowing. (If you know anything about maple syruping, too warm is not a good thing for sap flow - you want to fluctuate between the 20s and the 40s - right on either side of the freezing point.)

But this was Krassi's first time to really be out since last fall, and he was absolutely delighted.

I'm asking him here, "Krassi, are you so excited to be outside?" And he was responding by clapping his hands. By the way, have I mentioned how much I love it that he can clap his hands? I'm just realizing now that this is a relatively new skill - really since last fall when he's been more able to open up his left hand on his own.

Back inside we spent a bit of time in the afternoon down in the basement on the platform swing. Krassimir and a pink and purple butterfly went on it together. His posture still leaves a LOT to be desired, but activities like this give him good opportunities to work his core and build those terribly underdeveloped muscles.

Love that happy face!

I included this one just so you can see what he's able to do with his left hand. It has been such a beautiful thing to watch this hand open up like a flower unfolding and to see him trying and achieving so many more things with it. For so many years it was gripped in a tight fist in an attempt to give him some rigidity to compensate for his low muscle tone, and as he's growing stronger in other ways, and through work with his occupational therapists (and mom under their direction), we're seeing tremendous improvement.

And one more - this one a day after the others - we realized that bigger grips would be better for Krassi, so a trip to Menards and $1.94 later we have nice soft foam grips in a 1.5" diameter instead of 3/8" rope. How fun to have all three of these little ones on there at once! You can't see it, but Reuben's got his Bible on his lap. ;) He rarely goes anywhere without it. He kept counting for me, "Do, doo, dee!!" "Yes, Reuben, there are one, two, three! children on that swing!"

Random bits

Am I allowed to post more than once a month? I sure *haven't* been.

Don't worry. This will be short.

1) Krassimir now weighs a whopping 38 lb, 15 oz!!! That puts him an ounce away from a full ten pounds up since he came home just over 16 months ago!

2) Today Krassi got his first Botox injections in his adductor muscles. Briefly, botulism toxin (bo-tox) is a neurotoxin that temporarily reduces the amount of "firing" that neurons can do in the muscles where it is injected. The effects will wear off completely in about three months, but in the meantime, he will experience some relief from the high tone he has in those inner thighs - the muscles that pulled his hips out of joint because no one ever helped him form good hip sockets in the first place, and for the first eight years of his life no one ever did any stretching or anything to help him manage his uneven muscle tone. The hope is two-fold - first, that with less to fight against, the other muscles will have a chance to work better and grow stronger, and second, that he will be more comfortable. If it works, we'll do it again in three months.

3) Tonight Krassi and I skipped our normal bedtime cuddle routine (I'll have to write more about that another time) because I was reading to Owen and Leah, but I still had him on my lap while we were doing that. This is what happened:

My sleepy oldest son fell asleep right there in my lap!!

Sundays

 Not many things can compete with a Sunday afternoon nap. After two later nights, the little boys were tired enough that while Vania took her nap, Reuben slept with mom and Krassi fell asleep snuggled up with Dad! How neat is that? It is no small thing for this boy to accept snuggling. We have made some significant progress in this area over the last two months (that I started to write a post about, but it's still stuck in half-finished draft stage), but if anything that only makes something like this even more precious. Our son who is still afraid to let someone be *too* close (emotionally) is giving us little glimpses into the scared, lonely little boy hiding under the I-can-survive-without-love outside that he had to learn in order to survive the early years of his life.

We don't have pictures of it, but we had some of the kids' music on this evening before bed, and a crew of us were dancing with it - Rinnah's quite the dancer, and Reuben was jumping, and even Leah popped in a few times with her dish drying cloth. I prefer dancing with a little one in my arms, so first 'Vania got a turn, and then Krassi worked his way into the room and he got a turn. I LOVE dancing with this boy! He laughs and laughs and laughs!! We twirl and spin and slide and bounce, and he's giggling the whole time with that huge, wide, lovely smile of his.

And as I was thinking about commenting to Matt that Krassi never got to spend Sunday evenings dancing with his mommy when he was little, the reality that far from dancing, he often didn't get to even see anybody - anybody! - on Sundays because the staff didn't really want to come in on Sundays, and the director didn't really want to pay them to do it anyway, so often Sundays were the day he didn't get his once-daily diaper change, and didn't even get his pour-it-down-your-throat gruel in a bottle.

There are many days when the horrifying conditions that were his only reality for eight long years seem so unreal that I can't find a place for them in my consciousness, and then some days like today when it floods back and catch in my throat and my heart.

Open your mouth for the mute,
For the rights of all the unfortunate. 
Open your mouth, judge righteously,
And defend the rights of the afflicted and needy.
(Proverbs 31: 8-9)

Twelve days ago, twelve of Krassimir's former orphanage-mates' nightmares became real-life as they were moved from the Pleven orphanage to a small group home run and staffed by people who lost their jobs when the new director took over the Pleven baby house. Plans for this move were happening unbeknownst to the current director until less than a week before the move was to take place. Originally, they were to take 20 of the older children from the orphanage into their new group home, but the new orphanage director (who continues to make good progress) managed to make a case for eight of them being too medically fragile to be cared for at the new group home. But that still leaves twelve defenseless children who grew up under the abuse and neglect of these people, who have had just over two years to begin to heal and grow, back in the hands of the very people who damaged them so severely.

I get sick to my stomach just thinking about it. Krassimir has very low cognitive abilities, but he has the ability to recognize people. We saw this about him in the first week we met him at his orphanage, showing a range of appropriate emotions: happiness (to his baba), ambivalence, trepidation (for us), and even now, he will recognize and respond with pleasure to seeing the face of a person he's only seen once before, but has treated him with kind ness! I can't imagine what it must be like for those twelve children to be not only seeing the faces of their abusers, but seeing only their faces now, and none of the faces they've been learning to trust.

There is very little from a human side that we can do to "open our mouths" for these afflicted, needy, voiceless children. But you can open your mouth to God on behalf of these children!

And there is something tangible you can do for at least one of those twelve children. I have not been very vocal in this way on my blog, but this situation really grabs me, so I'm going to throw it out there just in case God is directing one of you reading this to do something. Two of the children who've been transferred are currently available for international adoption, and one of them, nicknamed "Brandon", who reminds us very much of Krassi - same diagnosis, same age - just a week ago had a family who was already into the process of adopting another little boy with severe medical issues from a different orphanage in Bulgaria decide to add him to their adoption process. Unbeknownst to him, Brandon is not only going to get out of the horrific situation he's back in, but he's going to leave not to go back to the Pleven orphanage, but to a family!!! They are currently trying to raise the extra money that it will cost to adopt a second child rather quickly so they don't compromise their other soon-to-be-son's health by adding extra time to the adoption. If you're interested in helping, you can go here to donate funds to Brandon's family for his adoption expenses.

Brandon

And since I'm on this topic of speaking out for orphans, Matt and I have a friend from graduate school who has adopted a child from the Democratic Republic of Congo, but the government there has suspended the issuing of exit visas for these children. Hundreds of children in the Congo are legally adopted but have not been given the visas they need to travel to the US to live with their families. So they wait. And their families wait. This situation has been going on for over a year and a half, and some of these former orphans have died while waiting for their families to come get them, and the rest of them are just stuck there...waiting. A formal petition to our government has been initiated in an attempt to let President Obama know that these children matter, and asking him to intervene. If you are so inclined, you can go here to add your name to the petition.

We can't fix all the problems in this world, but we are told to speak out on behalf of those who have no voice, so that's all I'm asking - if God is telling you to act on their behalf, here are a few ways you can do that.

Communication

Reuben used to be our "non-verbal" child. I still remember when he learned how to tell us "yes" and "no." Until you've had a child who is limited in their communication skills, you will never fully understand how revolutionary this is. Once you've got "yes" and "no" down, suddenly all sorts of opportunities present themselves.

Why are you crying - are you hurt?

Are you hungry? Are you thirsty?

Do you want to read a book?

You can get an incredible amount of mileage out of the simple affirmative and negative. Add to that a few others, like "more" and "all done" or "water" and "airplane" and now you've really got some material to work with.

Krassimir has shown us that he's quite skilled at understanding basic English, and learned quite a bit rather rapidly (yes, immersion is the best way to learn, but still! the vocabulary that boy is able to respond to appropriately is really surprising.) However, we have yet to have him communicate in a truly meaningful way beyond expressing pleasure or displeasure in a situation through varying degrees of laughing, smiling, whimpering, and crying.

For over nine months (easy to remember, because his initial evaluation was on Evania's due date) he's been working with a very experienced speech therapist who is consistently providing Krassi with multiple modes of expressive communication. She encourages simple vocalization ("use your voice, Krassi!") and responds to "eh" to mean more and "eh eh" (two syllables) to mean all done in the therapy setting. But it's hit and miss.

She has introduced basic signs for a nice, limited range of concepts: more, all done, yes, please/I want it/my turn (all combined into one simple sign), using those frequently and consistently in all of their sessions, and we do the same at home, but we have yet to see true, meaningful dialogue even at this level.

He is also at least once a week given the opportunity to interface with a touch-button device with a set field of basic options, and same thing - nothing meaningful, despite many many minutes of consistent cause-and-effect teaching. (Krassi pushes the button that says, "bubbles" and she blows bubbles. "All done" and she puts away whatever they had out.) But all we seem to get is meaningless random hits, or stimming (the same button over and over and over...)

A few weeks ago we were starting to get excited thinking we were seeing meaningful use of the sign for more. He definitely does the sign for more, and often in a seemingly appropriate way, but just as often in ways that are obviously NOT appropriate.

We're trying to withhold judgement, knowing from first hand experience that at the early stages of communication acquisition, once one word is mastered, suddenly they're using it for everything. I remember Reuben, when, if he used a finger on his lips as a physical cue, could say, "mmm-buh." That was HUGE!! It meant more for about a week, and then suddenly meant all sorts of things, pretty much anything he wanted he would call, "mmm-buh." And then it's not useful anymore. He wanted so badly to tell us what he was thinking that he started using the one thing he could say to mean everything, and then it meant nothing.

So is this what's going on with Krassi and his "more" sign? We don't know. I'd love to think so, but I'm equally wondering if he has simply learned that the people around him get excited when he does that because we think it means something, and he thrives on praise, so he does it just to make the people around him cheer him on.

I wonder sometimes how dark and thick the tangle in his brain is - how atypically his brain developed because of the consistent years of no meaningful human interaction, and particularly through the years when tiny humans are designed to be forming all of those pathways that lead to speech and meaningful communication.

an example of a small child who is NOT lacking in meaningful human interaction!

My mental picture of the human brain is one that allows for new pathways to be formed, but I see an image of a jungle - the longer that pathway has waited to get started, the deeper and thicker the undergrowth that must be cut through one piece at a time before even a little foot-path gets through, and even more before you can get a road that any efficient vehicle can run on. It seems at times as though there is some tremendous barrier that, though he understands speech coming in, he's been so wired to think that there is no reason to attempt any change initiating from himself that before we can begin to see communication develop, we first need to tear down that barrier.

How I would love to know what this little man has to say.

School

I'm realizing that if I don't just put *something* up for this post (which has been sitting here as a draft with nothing but two photos in it) it will be so out of date by the time I do it justice that it won't be worth doing!

Krassi had his first day of school last week! I've talked before about how much I have appreciated our school district's willingness to work with us, and am even more pleased working with them to find the right place for Krassi. When we first started looking into having him evaluated I asked to have him placed in the elementary school as a fourth grader instead of by his age which would have put him in fifth grade, and thus, for our district, middle school.

Over the course of the evaluation, it was decided that instead of being placed in the 3rd and 4th grade special education room that he would be in Reuben's K-2 classroom. I was VERY pleased by this, because we had hoped to have him with Reuben so he would still be with part of his family even when he's away at school. Delightfully, he's not only IN Reuben's room, but they have decided to classify him as a kindergartener for a variety of reasons, the biggest one, I think, being that kindergarteners don't need to do standardized testing, and they don't want to have to spend their limited class time (currently one hour per day three days per week) testing him when they'd rather be working with him. I like it.

Krassi getting picked up from his first day. Reuben's pretty proud to have his brother there. I have really like the chance to see Reuben for a few minutes twice in the middle of his school day!

I *think* the plan is for him to follow with Reuben through elementary school, and then fast-forward to high school so he can still "graduate" (finish 12th grade) with enough time before his 21st birthday so he can take advantage of the transitional services the school district provides for children with special needs. As everyone I've talked to says, "Who wants to go to middle school anyway?"

Krassi did a great job when I dropped him off that first day, and I was delighted to see how he responded when I walked back into the room an hour later - a big smile lit up his face, and his whole body wriggled with delight. Two days later when we were back for his second day of school, he made a little happy noise as we pulled into the parking lot, so I think that means he thought it was an okay deal. ;)

And, a fun anecdote so I don't forget it - I met one of Reuben's paras for the first time on Krassi's first day, and she immediately shared with me that she has a dog named Reuben who also has seizures and shares a birthday with Reuben! So she thinks it's pretty neat to be working with our Reu. ;)

Remember Huckleberry?

Some of you may remember a post this past fall about a bike named "Huckleberry" that Andrea and I and Krassi (and Reuben) all had a chance to test ride when we were in getting Reuben set for ordering his new bike for next summer.  It is the bike that was in the TV show "Ride Across America" a couple of years ago.

Last fall after this meeting we decided that even though we really wanted to be able to get all of us out biking next summer, that we could not justify the cost of a new bike like Huckleberry.  The bike had so many good qualities to it.  Primarily it would give Krassi good therapeutic use of his legs and his pedals could be in "constant cadence" with mine.  Secondly it would allow our whole family to bike next summer as I could have Krassi in front on the bike with me and also be able to pull Reuben's bike/trailer combo behind.  Andrea could pull Rinnah and Evania in our double trailer and Owen and Leah can ride their own bikes.  Lastly, it would allow Andrea and me to take any one of the other kids that would like to ride with us on a ride sometime or possibly even allow Andrea and I to go out for a ride together on our own if we could find someone to watch all the kids! (Andrea is proofing this before it goes up, and is thinking, "ha!")

That said, we decided at that time that the best option was probably to look at a larger special needs trailer that would be far less expensive (think less than 10% of the cost of a Huckleberry-esque bike).  The upside is that we would all be able to go out biking together, but it would not have any of the other benefits listed above.  But, it would be an option that would work and perhaps sometime in the future we could look into a bike for Krassi again.

In the days after we made that decision, I remember toying with the thought of asking the owner of the bike shop if he would be willing to sell Huckleberry to us at a discounted price.  However, after talking with Andrea about it, we decided not to pursue that option as we knew that he had a very strong emotional connection to the bike because of its history. That wasn't just any old floor model.

Fast forward a few months to this past Wednesday when I got a call from the shop owner asking if we would be interested in Huckleberry at a discounted rate.  He relayed that the manufacturer of the bike has made enough changes to the 2016 model that they do not want their dealers carrying older style demo bikes any longer.  As such, he needs to pass the bike along and he wanted to check with us first out of the three people/families that had expressed interest in that type of bike.  So...we will get the bike for 1/3 the cost of a new bike plus some additional costs to modify the bike to work for Krassi (but we would have had those expenses even if we had purchased a new bike).  We are VERY excited.

This email from Andrea's Dad in response to my email to him letting him know about the bike captures it for me...

The ease with which God gets things done is amazing. Hmm, how to get a better price on the bike. That's easy. Just get the manufacturer to cone out with a new model and make him think he needs to dump inventory. He doesn't even break a sweat.
And because you weren't worried about it, you get a great present.
God is very good.

We are completely overwhelmed at God's goodness.  I was getting choked up in my throat and could feel the tears starting to well up in my eyes when I was writing the email to Andrea's parents.  We had already moved on from the idea of getting this bike for Krassi and our family, but God apparently had not. There are times when God's goodness, in the face of our complete unworthiness, blows me away.

Heart Rate

Andrea recently read somewhere that parents of children who are autistic have the stress level of a combat soldier.  While Reuben is not autistic, there is something about the constant vigilance and surveillance of Reuben 24/7 that definitely has an impact on me and Andrea.  We often comment as we head to bed that we are entering the battle and not leaving it!

For a while I have been wanting to write a post, but have always found something else to be doing.  However, for the evening I am at the computer as Reuben is sleeping on the chair a few feet away. 

It started last night when Reuben had a seizure a little before we went up for bed.  Then he had 3 more in the early morning hours today.  Surprisingly, he woke up fine and was fine at church.  Then this afternoon he was playing his marble game in the basement (where I was varnishing trim) when he decided to go settle down on the "rest chair" and fell asleep. 

Reuben helping me varnish yesterday.

We generally try to keep him from napping these days to reduce the likelihood of seizures, but on days after he has had a lot of seizure activity, we will let him nap because we know how exhausted he can get.  He slept for about one hour and then got hit by a pretty hard tonic-clonic seizure. 

I carried him upstairs afterwards and he had a hard time settling in on the couch, but did eventually and then had multiple seizures upon waking up.  That was at 5:20 according to Leah who got me the time.  The tonic-clonic seizure ended and he started breathing again, but he just kept looking around and was not responsive to our attempts to talk with him.  He would periodically ask for "help" or say "done" but that was about it.  By now it is 15 to 20 minutes later and Andrea and I are both watching him and trying to figure out what is going on.  Is he still seizing or not?  Is this non-convulsive status epilepticus or is it just a longer and more difficult recovery period than normal?  Close to 6:00 we move into the dining room and I try to snuggle him on the chair.  He wants to get "down", but he is so wobbly he would immediately fall.  Then he has a few short tonic-clonic seizures in close proximity which is the cue to Andrea and me that he is still in some altered seizure state and that it is time to give him his "rescue" medication. 

We ask the kids to leave the dining room to give Reuben some privacy as we administer the rectal gel valium.  In the middle of this, he has another short tonic-clonic seizure.  Within 10 minutes, the valium has taken full effect and Reuben is "out" and will be for the next 2 to 3 hours.  During that period of time, he needs to be under direct supervision to monitor his breathing to make sure the valium does not slow him down too much and he stops breathing.  As such, I thought I would take a some time to write while I keep an eye and ear on him.

Now to the content related to the post title.  Heart Rate. 

There are really three things that get my heart rate going.  1.  When any of my children stop breathing (thankfully Reuben is the only one who has done this so far).  2.  When I smell fire.  3.  When there is water dripping in the house.

One:

If you have been reading this blog since we started the construction project, you know that all three of these have happened in the last couple years.  Reuben stops breathing multiple times a week when he has tonic clonic seizures.  Usually this lasts less than 15 or 20 seconds.  As odd as it sounds, those seizures don't really get my heart rate going.  They are "normal" around here.  However, when the clock keeps ticking and he is still totally locked rigid in seizure with eyes wide open and dilated and his breathing stopped, but his heart pounding away and his face and lips starting to change colors, that gets my heart going too.  I am thankful for the "rescue" medication that we have, but it was the time before this time that we used it that I recall very specifically thinking that if he has another seizure after you have given him the valium, there isn't any more you can give him.  This was a very humbling reminder to me that our "rescue" medication only works if God wants it to work.  There is no guarantee.  In that light, I often go to bed recalling Psalm 127.  "Unless the Lord watches over the city (Reuben), the watchman (Dad) stays awake in vain."

Psalm 127 is one that is very connected to Reuben for me.  It was 2008 after three of the most difficult years of my life when God got a hold of me and his Word came alive to me.  I read this Psalm one night and looked over at Andrea and asked her "why are we trying to keep God from blessing us?"  If God is real and his Word is true, it says that "children are a blessing from the Lord".  Less than 2 weeks later, Reuben was conceived.  Very fitting that is is that very same Psalm that I often return to.

Two:

We have had fire.  See this post.

Three:

Water dripping.  As many of you may recall, when we first started building the addition, we had lots of water issues.  However, they weren't technically inside as the line between inside and out was rather blurry.  A couple of months ago, we did have water dripping inside the house.  We were talking with a friend in our living room when Andrea calmly mentioned that there was water dripping out of the light switch cover plate and running down the wall.  The heart rated kicked up a few notches and the the brain starting running through all the options of where it could be coming from.  Fortunately, the area where the water was coming from was below the main mechanical soffit, so by removing one of the plywood panels over the adjacent mechanical chase and using a flashlight and a mirror I was able to locate the drip.  It was coming off the waste line from my Mom's toilet where I had apparently not gotten my PVC connection perfectly welded.  I so much preferred that option to it being rain water getting in somewhere.  A little repair work and the leak is taken care of and now all I have left to do is patch the sheetrock on the ceiling that I had to remove to get access to the pipe.

  The other benefit of this whole situation was that I had to take the toilet up and then set it again.  While I was looking for a new wax ring, I found a wax-less ring that I got instead because one of the issues you can have with in-floor radiant heat is that the heat can melt the wax ring.  Now that just won't be an issue!

It has now been 3 hours since we gave Reuben his medication and he is still "out" in the chair.  Actually he just woke up and asked for his "Baba" (Brian - his physical therapist - his standard request upon waking).  Apparently all is right again in Reuben's world.  We will see what the rest of the night brings.