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.
Thursday, December 18, 2014
Sunday, December 7, 2014
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.
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.
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. |
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.
Thursday, December 4, 2014
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!
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!
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!
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!
Foot in neutral position |
and his foot in flexed position. |
~~~
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. |
Friday, November 28, 2014
Smorgasbord
A quick glance over my last few (rather sparse) blog posts reveals that it has indeed been almost a month since I've had a chance to update on how Krassi's doing! So I thought today, Thanksgiving, was an appropriate day in many ways to give you a smorgasbord of tidbits on how he's growing and settling in while my little ones nap, my big ones play with Grandma and Grandpa, and my turkey slowly roasts in the oven.
We had a perfectly lovely fall here in MN, so even in early November we were able to spend some bits of time outside.
Krassimir and 'Vania continue to be the very best of friends. They are ALWAYS together, and that's only partly due to the fact that I usually sit down with her near wherever he is when she gets up from her naps. They really do seek out each other's presence no matter where they are, and they like to be close. A year ago I certainly couldn't have imagined how much these two would enrich each other's lives.
Krassi started occupation therapy about two months ago, and it has been SO good for him. While physical therapy was something we started with him as soon as it was possible after getting home (I think it was his second week here!), we were slow to introduce occupation therapy for a variety of reasons, and even though he's making incredible gains through the work he's doing with his two therapists, I have never once doubted our decision to wait. One reason that he's been able to make so many gains is, I believe, because we spent those months giving him the security of knowing he was loved, and I think his awareness that he has a mommy has given him the ability to branch out in many ways that he couldn't before that was firmly established.
His therapists are working with him on very basic things - posture and core strength - but also are working through a variety of different reflex exercises to help him build his awareness of his body and boost sub-conscious responses to different stimuli. (I'm very aware while typing this that Reuben's OT occasionally reads my blog and I should really have her proof this in case I'm explaining it way wrong! So Kelsey, if you read this, feel free to correct me and I'll revamp what I've written here!) ;) Some of the exercises they do seem kind of unusual, but after what I've seen them accomplish with Reuben last spring, I am eager to get on board with ones they think will benefit Krassi!
Other big news around here is that Krassi is being fitted for a wheelchair just his size. We've been very grateful for the long-term loan of the stroller that we use when we're out and about with Krassi, but a wheelchair will give him the ability to move himself around. Getting a wheelchair, it turns out, is a drawn-out, lengthy process. First, Matt and Krassi met with a physical therapist at Gillette at a "joint seating" appointment, meaning that a rep from a medical supply company was also at the appointment. Here they discussed all sorts of options, and together settled on which basic model of chair they thought would be the best fit for Krassi. The next step was to try out a loaner chair for a week, but the waiting list on that was so long that it took almost two months before Krassi's turn came. That was two or three weeks ago. A different rep came out with a chair and a few adjustable options and spent an hour tweaking and refining to get it as close as possible to what we thought would be a good fit.
We got to keep the chair for a week, giving Krassi as many opportunities as we could to be in the chair and work with it. Here's Daddy and Krassi testing it out that first day.
That night we made a few minor adjustments to the back - Krassi's core strength is so poor that sitting upright is really hard for him, still, and the harness they provided, although good in concept, does not give him the support that he needs. But guess what - smart little boy understands that those wheels work to move him around! He's got a long way to go to learn exactly how to move them to get where he wants to go, but we're pretty sure he'll get there. His ability to use his left hand has increased so much in the last two months, and if that continues, it will serve him well. Getting both hands to work in a coordinated fashion on the two wheels will also be important for him to learn if he wants to predictably go in a straight line.
Probably my favorite part of how Krassi has grown over the last few months is in his willingness to accept my affection. We've known all the way along that we have had a much easier road with "attachment" with Krassi than many families/children have, but it's still a road to travel, and not something that happens over night. I've seen especially with me, his mommy, that he has made some significant gains this fall. One way we've noticed this is that he has been working with his therapists this fall without my presence for the whole time. We worked very hard from the beginning to have me be very present during all of his sessions, not only for the take-home benefit, but even more so he could learn that I would always be there for him, and that he would learn to love my voice and my praise over those of these other people who would be working so closely with him. It is encouraging to me that he is just fine with me NOT being there (whereas before in the earlier stages of attachment he would be unsettled if I was out of his sight for a few minutes) AND that when I do join in on his sessions, he just beams at me as he gets to hear my appreciation of what he's working on. His whole body beams when I praise him.
And then there are moments of even greater closeness that are becoming more frequent this fall. We had a mild bug run through the house, and on one of his down days let me snuggle him up, and he stayed there happily for quite a while, sometimes resting his head on my shoulder, sometimes looking around at the activity, but all the while accepting and seeming to enjoy my embrace.
At fairly regular intervals (roughly once a week), we've had an evening when I'm reading to Owen and Leah when the younger kids are in bed, and if Krassi's still up, I'll pull him up onto my lap while I read. Somehow he seems to know that this is another notch up on the intimacy scale, and he has not yet learned to like it. My heart aches as I hear him cry while I hold him in a way that is different from any other cry. I don't really know what goes on inside his little head, but my best guess is he's mourning something that he may not be fully aware of himself. He sounds so lost and alone, and my heart breaks as I think about all of the hundreds and thousands of nights that he spent the day alone and put himself to sleep alone.
We had a perfectly lovely fall here in MN, so even in early November we were able to spend some bits of time outside.
Krassi still loves swinging. Evania is big enough now (when she's wearing a snowsuit) that she can swing, too! |
on the floor in the kitchen |
'Vania will even get herself sitting on Krassi. This happens quite frequently - often enough to know it's not accidental. |
The same day as the above photo (look at the clothes), but in a different room of the house. Notice that she's chewing on his socks?? |
And then sometimes I have whole piles of children laying around on the floor! This is what kept me company making supper one afternoon. |
There those two are again, and notice how she's climbing right up on top of him? |
She thinks it's pretty funny, too! |
Different day, different room, but the same two buddies getting into trouble together. ;) |
Krassi started occupation therapy about two months ago, and it has been SO good for him. While physical therapy was something we started with him as soon as it was possible after getting home (I think it was his second week here!), we were slow to introduce occupation therapy for a variety of reasons, and even though he's making incredible gains through the work he's doing with his two therapists, I have never once doubted our decision to wait. One reason that he's been able to make so many gains is, I believe, because we spent those months giving him the security of knowing he was loved, and I think his awareness that he has a mommy has given him the ability to branch out in many ways that he couldn't before that was firmly established.
His therapists are working with him on very basic things - posture and core strength - but also are working through a variety of different reflex exercises to help him build his awareness of his body and boost sub-conscious responses to different stimuli. (I'm very aware while typing this that Reuben's OT occasionally reads my blog and I should really have her proof this in case I'm explaining it way wrong! So Kelsey, if you read this, feel free to correct me and I'll revamp what I've written here!) ;) Some of the exercises they do seem kind of unusual, but after what I've seen them accomplish with Reuben last spring, I am eager to get on board with ones they think will benefit Krassi!
There. This works. Can you see the difference? This was one of the photos we were given upon requesting his file from the adoption agency when we were looking into committing to him. |
And it's down!!! Success. |
Other big news around here is that Krassi is being fitted for a wheelchair just his size. We've been very grateful for the long-term loan of the stroller that we use when we're out and about with Krassi, but a wheelchair will give him the ability to move himself around. Getting a wheelchair, it turns out, is a drawn-out, lengthy process. First, Matt and Krassi met with a physical therapist at Gillette at a "joint seating" appointment, meaning that a rep from a medical supply company was also at the appointment. Here they discussed all sorts of options, and together settled on which basic model of chair they thought would be the best fit for Krassi. The next step was to try out a loaner chair for a week, but the waiting list on that was so long that it took almost two months before Krassi's turn came. That was two or three weeks ago. A different rep came out with a chair and a few adjustable options and spent an hour tweaking and refining to get it as close as possible to what we thought would be a good fit.
Here's Krassi giving the loaner a trial sit. |
That night we made a few minor adjustments to the back - Krassi's core strength is so poor that sitting upright is really hard for him, still, and the harness they provided, although good in concept, does not give him the support that he needs. But guess what - smart little boy understands that those wheels work to move him around! He's got a long way to go to learn exactly how to move them to get where he wants to go, but we're pretty sure he'll get there. His ability to use his left hand has increased so much in the last two months, and if that continues, it will serve him well. Getting both hands to work in a coordinated fashion on the two wheels will also be important for him to learn if he wants to predictably go in a straight line.
Big boy so proud of himself! And sitting really nice and tall in this one. |
Probably my favorite part of how Krassi has grown over the last few months is in his willingness to accept my affection. We've known all the way along that we have had a much easier road with "attachment" with Krassi than many families/children have, but it's still a road to travel, and not something that happens over night. I've seen especially with me, his mommy, that he has made some significant gains this fall. One way we've noticed this is that he has been working with his therapists this fall without my presence for the whole time. We worked very hard from the beginning to have me be very present during all of his sessions, not only for the take-home benefit, but even more so he could learn that I would always be there for him, and that he would learn to love my voice and my praise over those of these other people who would be working so closely with him. It is encouraging to me that he is just fine with me NOT being there (whereas before in the earlier stages of attachment he would be unsettled if I was out of his sight for a few minutes) AND that when I do join in on his sessions, he just beams at me as he gets to hear my appreciation of what he's working on. His whole body beams when I praise him.
And then there are moments of even greater closeness that are becoming more frequent this fall. We had a mild bug run through the house, and on one of his down days let me snuggle him up, and he stayed there happily for quite a while, sometimes resting his head on my shoulder, sometimes looking around at the activity, but all the while accepting and seeming to enjoy my embrace.
Krassi with a fever snuggling with mom. |
This week my parents were in town for Thanksgiving, and it's really fun to see how Krassi remembers and enjoys Grandma and Grandpa's visits. He took an especial liking to Grandpa this time around. They've always clicked, but over this visit, Grandpa couldn't sit down within sight of Krassi for more than a minute before that little guy was pulling on Grandpa's knees asking to be picked up. The last night they were here Grandpa and Krassi were "wrestling" and Krassi was laughing so hard he could hardly catch his breath! It is so special to see him not only deepening his connection to me, but at the same time broadening his affections to others who are a close part of our family. This first year home has been one of grounding for Krassimir, and I have a feeling that from that base he's going to blossom in many more ways over this next year.
Monday, November 17, 2014
**NEW and IMPROVED** Construction brief, now with 22% more photos...
My camera is full of photos of all of the little projects that Matt's been knocking off on the addition over the last two weeks. All of the projects he's been working on that wanted to get in the ground before frost are either done, or missed it ;) so his work load has been light enough to give him some good chunks of time to work on *our* stuff! So instead of little snips here and there, here's the last eight days all at once:
November 8th:
November 11:
November 15:
November 8th:
I went outside on this (not too cold) Saturday to find my husband putting up the shutters!! I've been so excited to see these go up! |
More or less finished. Also a good shot of the big dead tree that we had taken down. This one was not one for Chad to do. ;) |
In the back corner, lights are all in, and it's taped off for the other darker color of paint. |
Thursday, November 13, 2014
A change
Apparently a full year of getting your diaper changed as soon as it's apparent that it's dirty just doesn't get old after over nine years of having to lay in it until you get your once daily diaper change. The delighted smiles I get when I change him bring both joy (at being able to make him happy with something so simple) and sadness (at realizing how very much his most basic needs were not met for almost a decade of his life.)
Thursday, November 6, 2014
The smoke alarms work...
...and no the addition did not burn down! Today was the day that the fireplace installer came and finished up the installation of the fireplace. We passed our chimney inspection this morning and then the installer put the log-set in place and installed the face trim and gave us the tour of how to operate it and how to clean it. The first time you use it, they recommend burning at full flame for about 6 hours to "break it in". So after supper tonight we fired it up and opened the windows to let the smoke out. The installer said the first hour would be the smokiest as the paints cure and the oils and dust burn off. About 20 minutes after starting it, it was getting a little hazy in the living room and I commented that I wondered if the smoke detectors were working. About 5 minutes later the one in the living room went off followed immediately by the one upstairs (since they are interconnected). Good to know they are working and fun to finally have the fireplace installed.
Reuben, our little pyro, got home just as the installer was finishing up and he went over to my sawhorse and grabbed some shims and was ready to start feeding the fire. I think he was a little disappointed that it is a gas fireplace and not a wood fireplace. However, this evening after supper he was out there again until he went to bed and he was pretty content to say "bon-fire" in his language [something along the lines of la-la-laie-yo-yo] and hold his stack of shims even if he could not put them into the fire.
(Note from Andrea - we're spending some time tonight moving things around in the living room so we can use more of the space by the fireplace on a daily basis now. Sawhorses are pushed to the side, or moved to the office level, which is functioning as a staging ground for things that will move into the basement after Matt paints down there. He thinks he's done with the mudding and sanding, so next larger chunk of time he gets will be spent priming! Also please note that we have not finished the fireplace wall yet - it's still just bare mudded sheet rock. Cosmetic things are a lower priority until we get the spaces livable!)
Reuben, our little pyro, got home just as the installer was finishing up and he went over to my sawhorse and grabbed some shims and was ready to start feeding the fire. I think he was a little disappointed that it is a gas fireplace and not a wood fireplace. However, this evening after supper he was out there again until he went to bed and he was pretty content to say "bon-fire" in his language [something along the lines of la-la-laie-yo-yo] and hold his stack of shims even if he could not put them into the fire.
(Note from Andrea - we're spending some time tonight moving things around in the living room so we can use more of the space by the fireplace on a daily basis now. Sawhorses are pushed to the side, or moved to the office level, which is functioning as a staging ground for things that will move into the basement after Matt paints down there. He thinks he's done with the mudding and sanding, so next larger chunk of time he gets will be spent priming! Also please note that we have not finished the fireplace wall yet - it's still just bare mudded sheet rock. Cosmetic things are a lower priority until we get the spaces livable!)
Sunday, November 2, 2014
One lovely October day
This past October was a month of gratefully remembering all of the many people who gave us their time last fall to push hard to get the exterior of the addition weather-tight before Owen and I left for Bulgaria to bring Krassi home. We didn't get it quite done, but close enough that we could rest on that for the winter. And spring. And summer, and much of fall, too.
But, this past week, on a lovely October day, Matt had time to get out and finish up all sorts of loose odds and ends. (Have I ever mentioned how much I admire the way my husband can work??? Well, now I know I have!)
The results:
And I apparently don't have photos, but Matt got the battens on the door wall, and got them caulked, and also slid in the few pieces of siding on the existing house that had to be pulled off to make the junction between the two, so we are now, for this winter, completely weather tight.
Even though the all-consuming nature of this addition is definitely over, there's still regular work going on. Tonight Matt's putting on another coat of mud on the basement sheet rock, hoping to have things ready to prime down there by the end of the week. He and I may try putting in the last bit of wood floor at the bottom of Barb's stairs now that we have the subfloor evened out there. We'll see. ;)
Regardless of what happens tonight, it's been good to continue to see things reaching "finished" stages. What an incredibly packed last year and a half its been. I doubt we'll even in our lives have another 18 month period with as many significant life changes as this past one has had. We have started and close to finished building, mostly by ourselves (read: Matt) an addition that doubles the living space in our home. We have added a 10 year old son, a newborn daughter, and a mother/mother-in-law to our household.
But, this past week, on a lovely October day, Matt had time to get out and finish up all sorts of loose odds and ends. (Have I ever mentioned how much I admire the way my husband can work??? Well, now I know I have!)
The results:
A close-up of the underside of the soffit. I love the leaf imprints. Those boards have been waiting a long time to find their home! |
One last panel (the vertical one to the right of the bank of three basement windows) that's been missing for the last year is now in place. |
And look! There's now rigid insulation AND the first layer of finish siding (the "board" of the board-and-batten) around that door! |
It looks like just a photo of kids, but it's also a photo of Daddy working. In case you were wondering, it was totally butterfly leotard with boots, mittens, and a hat weather if I've ever seen it. |
Girls. Staged, of course, since we had to ask Daddy to come over and take the picture. |
A few last shingles on the fireplace bump. |
Even though the all-consuming nature of this addition is definitely over, there's still regular work going on. Tonight Matt's putting on another coat of mud on the basement sheet rock, hoping to have things ready to prime down there by the end of the week. He and I may try putting in the last bit of wood floor at the bottom of Barb's stairs now that we have the subfloor evened out there. We'll see. ;)
Regardless of what happens tonight, it's been good to continue to see things reaching "finished" stages. What an incredibly packed last year and a half its been. I doubt we'll even in our lives have another 18 month period with as many significant life changes as this past one has had. We have started and close to finished building, mostly by ourselves (read: Matt) an addition that doubles the living space in our home. We have added a 10 year old son, a newborn daughter, and a mother/mother-in-law to our household.
Subscribe to:
Posts (Atom)