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.

A second helping

As comprehensive as I tried to make my last big update post about Krassi, I've realized over the last few days that I've left out a number of significant things, and as of today, have something else rather significant to add to the list. So this post will be an addendum to the smorgasbord of a few days ago.

Two weeks ago Krassi successfully made it through his first hair cut that involved no tears on his part! (Or anyone else's part, either.) His hair is fun to cut because he's got these funny cowlicks that make him look like he styles his hair purposely with a bit of flair. ;) It also helps ease over the fact that despite a more relaxed boy, it's still hard to cut this kid's hair! (The lack of core strength and thus ability to hold up his head is the biggest challenge. Because he's strong enough now to sit using his own arms for support for longer than he could last time we cut, it was a much easier job! But most of all I love it that he didn't break down sobbing before it was over. One more tiny place where we're starting to build enough memories of positive, safe encounters that he doesn't automatically revert to his memories of painful, frightening ones.

(Reuben's hair cut the same night was a little more exciting. He is hard to cut for the same reason he's hard to bathe - everything tickles! If I hadn't been doing it alone, it would have made for some exciting photos as I lay his head on my lap, hold down one of his arms with my left arm, his head still with my left hand, and his other arm with my right leg as I go after him with the trimmer. ;) His hair cut doesn't look as good as Krassi's does!

Krassimir has made such gains in his eating. Almost without noticing it, he is able to now handle much less processed food. We used to blend whatever he ate to a complete puree with our little hand blender, and for a long time were just working on having him handle that thicker, but still completely smooth. I realized last week that we've worked up to 1/4" chunks of green beans and similar sized bits of ground meat in the blended dinners, and with soft-ish pasta, pieces much larger than that - often, for smaller pastas, not hardly blended at all. At breakfast we still blend up his stewed prunes with a small amount of oats, but roughly 2/3 of his bowl of oatmeal in the morning is just straight up old-fashioned oats! When he first came home his gag reflex used to trigger with the smallest little bits, but he's learned to move far beyond that!

Related to this is that it's been a very long time - I can't remember when - since he's had an emotional breakdown during a meal. These used to be fairly regular occurrences in the months after coming home, but I realized recently that it just isn't any more. That's not a bad accomplishment over a year - to learn that what you've always thought was a terrifying/life-threatening thing at worst, and severely unpleasant at best, is now just a normal part of the day. Maybe after another year he could start to learn to enjoy it a bit. ;) We'll see. He still requires quite a bit of coaching to put his toys down to be brought to the table, but that, too, happens most of the time without any protest on his part. He's also learned that toys will still be where you dropped them when lunch is over!

The last thing I've noticed related to his eating just in the last week is that he is now able to respond to purely verbal cues when he starts getting defensive at meal times. Even though we don't see the emotional breakdowns anymore, his right hand coming up in front of his mouth to show that he doesn't want another bite of food is still a regular part of each meal. Fairly early on we learned that if we used one hand to gently move that hand away that he would then open his mouth to take the bite, and that's worked well for getting him past the humps he hits during meal time. But now I can simply use words to say, "Krassi, can you put your hand down and open your mouth so you can take another bite of your supper?" And he does it! How's that for my smart boy!! I know immersion is the quickest way to learn a second language, but I'm still regularly amazed at how much English our boy understands. And to see him now understanding AND willingly complying is truly beautiful.

Needless to say, the decreasing aversion to mealtime has been a major contributing factor in his weight gain. His speech/feeding therapist is continually pushing me to push him further at home, as he's doing even more with her in the therapy setting, but the difference there is that at therapy she's not trying to get him to eat a whole meal, but 5-10 bites, and I have to make sure I get enough food into him that he keeps growing, and secondly, his therapist is not simultaneously trying to feed herself and nurse a baby. ;) Even so, his progress with her encourages me to continue slowly pushing his limits at home, knowing that there's plenty of room for him to progress, and that we'll get there at the right time. For the meantime, having him learn to enjoy mealtime is important enough that we are staying 2-3 steps behind what she's working on with him at the therapy center.

~~~

Other big news is that we met with the public school district earlier this week to review with them their recommendations after the month of testing almost a dozen different school personnel did with him, mostly coming to our house to see him in an environment where he's most comfortable. When we originally contacted the school district we had asked for him to be placed in fourth grade instead of fifth which is where his age would put him. In our district, fifth grade would put him at the middle school, and I knew I was absolutely not ready to send this little man off to middle school!! But elementary school was at least a possibility in my mind. We had talked about starting him in an even earlier grade so he could potentially be in Reuben's special ed classroom, but one of the teachers recommended we not do that so he would not lose out on the benefits of transitional services the district would provide to him after completing grade 12 and before he turns 21.

I still couldn't quite figure out what they would be able to come up with that we would be comfortable with for Krassi. Unlike even some of the other children from Pleven, Krassi is so significantly delayed that even kindergarten tasks are impossibly beyond him at this point, but we want him to have as many opportunities to develop those skills as possible, and as many skilled therapists working with him as we can.

The recommendation that was discussed at that meeting earlier this week was so fantastically appropriate to our concerns and desires for Krassimir that I couldn't have hoped for better. The plan right now is to have him be a fourth grader, but to have him repeat fourth grade for as many years as it is beneficial. He also will NOT be in the 3-4 grade special ed classroom, but will be in the K-2 room (where Reuben is!) for a variety of reasons. One, the academic day of those students more naturally allows for the kinds of activities that will be more beneficial to Krassi (fewer expectations of sitting and attending to desk work, and more opportunities for gross motor play, and other more play-oriented ways of learning.) Two, his small size makes him a good fit for a room with younger children, and third, they recognize the importance of being in class with his brother - a constant reminder for Krassi that he is not being left alone, but is still with part of his family!

The other item they were willing to be very flexible on is when  he attends school. What we decided was to start with one hour a day, three days a week (the same three days that Reuben attends.) Until he gets his wheel chair, Matt or I will bring him and pick him up from school, and he will use his stroller, but once he gets his chair, the bus will come, apparently even if it's not a "normal" school time. That means we could have that little yellow bus at the bottom of our driveway four times a day on school days! But the hope, too, is that Krassi will work up to putting in more than one hour a day.

One thing that I was reminded of at this meeting is how much a child like Krassimir is outside the realm of "normal." Even the special education department has kind of a "normal" way of functioning, and he doesn't work within that framework. The director of special education for the whole district was part of this meeting, and we were asking about the long-term plan, and he honestly said he didn't really know what Krassimir's school trajectory would look like. The best we got is a loose idea that he will be a fourth grader for as many years as necessary until he's ready to go to high school so he can finish 9-12 and thus qualify for as many of the up-to-three-years of transitional services that the district will offer him.

What I'm most excited about is that they really seemed on board with working within the system that doesn't "fit" Krassi to make it do whatever Krassi needs it to do.

As a home schooling mom, I have to say that the more I learn about our school district the more I appreciate it. I still think that home education is very much the way to go for the ones that we have at home, but I am so very grateful for the flexibility they are able to offer us as we seek to provide the best education we can for each one of our very different children.

~~~

After a good solid year of wearing his first set of ankle-foot orthotics, Krassimir has finally reached the point where he needed a new pair, both because his feet have grown longer and his calves wider, and also because the first pair has done its work of helping to stretch and re-position his feet to the point that he's able to handle something with some articulation. After our initial appointment to make the molds of his feet, his appointment yesterday took a full three hours of trying on, sitting and waiting to see where pressure points hit, making adjustments, and repeating the process. Here's what we have to show for it!

He's good at sitting, but sitting on a soft surface like this, and leaning over like that to look at his braces makes this a somewhat precarious position, and we brought him right back down to the floor after getting the photo!

 His old braces were completely rigid because that's what it took to get things in his feet and ankles aligned correctly. These give him the ability to bend slightly at the ankle, which will make things like using his walker much easier for him to do.

Foot in neutral position

and his foot in flexed position.

 I was told when he got his first pair that if I could put those braces on that I'd be able to do any pair of braces. It's true. These are much simpler!

~~~

And lastly, one delightful thing about this second year at home is that this is NOT the first time Krassimir's seen us putting up a Christmas tree! It's his second Christmas tree. ;) And since Grandma lives with us now, we're putting ours up in the dining room (what used to be the living room) and Grandma's larger one is going up in the new living room, so he'll get his third Christmas tree this year, too!

This is my favorite photo because it shows me and all six of the kids crowded into the corner where the tree is! Krassi really is in there down on the floor right in front of the tree.

See - you can see his legs between mine and a bit of his plaid shirt. Lots of helpers. ;)

And into the living room to start working on Grandma's, and guess who's right there crawling all over Krassi? Yes. You guessed it. I'm not surprised. ;)

He had fun playing in the lights while Daddy was trying to wrangle them around the tree.

Love this shot of my handsome boy. He has such a beautiful profile.

There. Now *that* should fill you up on Krassi-news for a while. ;) Good thing, because I'll probably be pretty busy over the next few weeks getting ready for Christmas!