Today is Wednesday, August 28th. Today is the first day of school. Casey is sad. It's the first day time he doesn't return to school with everyone as he has done for 20 (well preschool and kindergarten may have had different start dates) years. He didn't always like or cooperate with school work but he sure loved going. He loved the commotion and the attention and just being around the kids, staff and teachers.
Today Colin would have/should be, started/starting his post grad year #1. I *think* we would have had him continue as a post grad like Casey did. Although, Casey physically went to the high school and Colin did 99% of his school from home. Casey also loves to learn. Colin was a reluctant learner, lol. Some things interested him more than others, of course. He was really starting to enjoy cooking and art projects and he was convinced that he should have won at the Science Fair :) But, there was so much more we could have done with his communication and his expressing his thoughts/feelings, etc. Not sure what it would have looked like around here. Since Casey is done with school, he is home. Of course he goes out and has appointments, we do fun things and occasionally he goes to Howard for activities but much of the time he is home. I can't quite imagine Colin being cooperative with school stuff while Casey was in the next room!!
All this thinking makes me sad. Colin being gone is certainly huge all the time, and gives me such a heartache, especially on what should be a milestone day.
Casey is sad, too, but I didn't harp on the fact that it was the first day of school. He was aware that it was coming up, of course, but I never actually told him which day it was.
A couple of weeks ago, he expressed interest in buying some groceries for the Milton Family Center. He has done it several times before. For some reason, Casey is concerned that people get enough to eat. He's always telling us to eat. He has zero interest in trying foods, so who knows. Anyway, the Family Center was also looking for donations of school supplies. I thought it would be good to shop for both. Well, Staci, Casey and I went into Dollar General to shop. Someone was NOT cooperative. He would say Casey back. Casey school, etc. He was loud and not a good picker outer. But we got through it. Staci and I had both already picked up some supplies so we added the new stuff to the stuff we bought today and headed to the Family Center. I asked for Kelly and she came out and made a big deal about Casey :) We will miss her as she is retiring and leaving the state to live with family in Georgia.
So this really showed us how Casey was feeling about his school life chapter ending :( I hope we can make his next chapter stimulating and fun.
And let me tell you, I have those feelings, too. It's been weird, these past 6 months, with Casey not in school. I could kind of pretend that it was a long summer break, but now, when back to school time is, it hits. I've spent a lot of my time with some sort of connection with the school--meetings, emails, baking for meetings, composing letters, thinking about curriculum, behavior and behavior plans, scheduling, etc. I used to go to school with Colin some days as well as the meetings, etc. And I spent countless hours with him on 'TV school' when he was home bound. Now it's done. All gone. No more. Such a big part of my life that has an end. It leaves me feeling a little ungrounded so I can imagine how Casey feels. I couldn't wait to be done with high school and move out and start college. Casey doesn't have that. Didn't have that to look forward to. I hope we can keep his mind and spirit happy and growing.
Showing posts with label Colin-school. Show all posts
Showing posts with label Colin-school. Show all posts
Wednesday, August 28, 2019
Wednesday, February 12, 2014
Colin rocked the Science Fair!
Colin, Priscilla and Karyna spent the day finishing up Colin's science fair project. Finished writing, printing, matting, gluing, etc. Finally, done! Priscilla brought it over to school and set it up.
I napped (had the boys last night and Casey was a total restless mess). I had help from Ryan Nelson on how to make Colin's experiment pictures and videos into a slideshow. So easy once he walked me through it.
Decided that Gene and Casey would stay home because Gene was feeling pretty crappy and Casey has his ear infection going on and was pretty tired out.
Aunt Chris came and we got ready to head out. Called Priscilla and Rick to let them know we were leaving...she was there already with Rick. Rick (Priscilla's husband) is such a good sport and came to help tote things and hang out. Told us to park out back and drive up on the sidewalk (it was okayed for us to do that). So we had a perfect spot. What a Zoo!! But I really think they did a good job with set up and that kind of stuff. Everybody had a table and a number and it was pretty organized.
Colin had to be at his table to be judged from 6-6:30. We set up the ipad and looked around and chatted and not too long later the judges came. Colin got shy when the judges came and shut his eyes but Priscilla talked to them and explained how he did things and how much work he put into it. I think they were impressed.
After he was judged (and we have no clue as to how he did or what the rubric was for judging) we toured many of the projects. Lots of great ideas and hard work in the gym!! Colin talked with some of his friends and had a good time. He really was excited! My favorite part was a hug from Tom Keblin, one of Casey's middle school teachers. He is teaching at a different school now but came back to judge and see his old cronies.
Daddy and Casey watched Emergency 51 while we were gone and had a fine time. I think they missed us a little bit, though. So all in all it was a successful evening and all went smoothly. Pretty impressed with myself since I drove and parked and got Colin in and out all by myself and we had no equipment snafus or any mishaps. Whew!
I napped (had the boys last night and Casey was a total restless mess). I had help from Ryan Nelson on how to make Colin's experiment pictures and videos into a slideshow. So easy once he walked me through it.
Decided that Gene and Casey would stay home because Gene was feeling pretty crappy and Casey has his ear infection going on and was pretty tired out.
Aunt Chris came and we got ready to head out. Called Priscilla and Rick to let them know we were leaving...she was there already with Rick. Rick (Priscilla's husband) is such a good sport and came to help tote things and hang out. Told us to park out back and drive up on the sidewalk (it was okayed for us to do that). So we had a perfect spot. What a Zoo!! But I really think they did a good job with set up and that kind of stuff. Everybody had a table and a number and it was pretty organized.
Colin had to be at his table to be judged from 6-6:30. We set up the ipad and looked around and chatted and not too long later the judges came. Colin got shy when the judges came and shut his eyes but Priscilla talked to them and explained how he did things and how much work he put into it. I think they were impressed.
After he was judged (and we have no clue as to how he did or what the rubric was for judging) we toured many of the projects. Lots of great ideas and hard work in the gym!! Colin talked with some of his friends and had a good time. He really was excited! My favorite part was a hug from Tom Keblin, one of Casey's middle school teachers. He is teaching at a different school now but came back to judge and see his old cronies.
Daddy and Casey watched Emergency 51 while we were gone and had a fine time. I think they missed us a little bit, though. So all in all it was a successful evening and all went smoothly. Pretty impressed with myself since I drove and parked and got Colin in and out all by myself and we had no equipment snafus or any mishaps. Whew!
Tuesday, February 4, 2014
Sleepy Colin
Colin just fell asleep during his half hour break in school. Weird. Mel gives Priscilla a break and comes and does Unified Arts with Colin every day. He's in music/drama right now. The connection via Skype has been pretty much non-existent lately so maybe that's why he was bucking participating today. He is supposed to participate, and for doing so he earns stickers for either Persistence or Flexible Thinking, which are part of the Habits of Mind for the middle school (but that's another story). Today they got connected and Colin started in with his noise making and closing his eyes. He did not earn any stickers so that means NO fun break afterwards. It's lunch time for the kids so Colin usually gets to pick something fun to do. He usually picks watching a Wii walkthrouh and lately it's been Nancy Drew. Poor buddy. He likes his one-on-one time with Priscilla and Mel so we think that's why sometimes he has a hard time with Skype and VGo, at times. He's been a little odd these past couple of days; he just hasn't been finding a comfy spot. He wants his arms moved a lot, especially his left one. I hope it's not hurt. I ended up giving him Tylenol earlier so maybe he just got all his aches and pains taken care of so he dozed off.
Friday, January 17, 2014
 | |||
| Water Colors! |
He also had a good time with his science experiment. The kids used frozen juice concentrate and water to make different ratios and then they tasted them. Pretty cool lesson! Colin really liked tasting the orange juice! I'm surprised that he's been so into it lately. Casey has totally no use for trying things and Colin used to like it when he was little but kind of got out of it. But the past 6 months he's been into it.
Karyna (Colin's nurse) and Colin played some games after school today and he had fun with that, too. Splashy the Whale and Jumpin' Monkeys were the picks of the day.
I had my phone interview for a SMA Care Giver Perspectives Research Study being conducted by a pharmaceutical/biotech consulting group. I was on the phone with the woman interviewer for about an hour--and I'll get a hundred bucks for it (well, in4-6 weeks). I'm not sure who is funding the study or what they are hoping to learn from it, but it was interesting and they had good questions. We'll see if we ever hear what comes out of it.
Oh, and Colin did well with Mel this morning, too. He's had a harder time working with her in the new special, music. We think it's because he just did a unit of PE and got to do fun things like play wii in his stander and get a massage....but today he had his A game on and did a good job!
Casey had a pretty good day. Of course he was loud at times but he did okay. He was even disappointed when Read, Read, Read was over and it's a longer class than last semester.
Still having a hard time getting the DynaVox to work the way it was before we sent it in for repair. Today Paula was on the phone with DynaVox for an hour and the tech couldn't figure out why it wasn't doing what we wanted it to. She called here when Mel was here and she and Mel talked and they tried a few things, to no avail. But, Paula thought they had it working so that if we opened the browser FOR Casey he'd be able to do his maps and send things to the Internet but it didn't appear to be working right this evening. It's almost like the scanning stops and then Casey is stuck. Poop.
I guess that's it for tonight. AC came and played Lego wii with Collie. Then we watched some DVRd American Idol.
I think we have a nurse tonight....I thought she was coming but it's crossed out in the book, so we'll see!
Wednesday, January 15, 2014
Not a whole lot accomplished today.
BUT, I did call Dr. Lahiri's office, the pulmonologist who will be doing Casey's bronchoscopy on Monday, in hopes that he'd call me back to chat with me about the procedure. Well, I was writing down my questions when I called and the person said let me see if he's out of clinic. A minute later he was on the phone! I love that our docs are so accessible! We had a nice chat but I didn't ask him all that I wanted to because I hadn't written down all my questions yet, ha ha. Oh well, I'm feeling better about the whole thing. The two worst things will be getting there at an unheard of hour--not sure when exactly, but Casey is the first procedure and they usually start at 7:25, yikes! Secondly, we have to get there early and head to the Comfort Zone to get Casey's IV. Other than that, Dr. Lahiri thinks it will be quick--like 10 minutes. He doesn't anticipate any complications and he's not even sure if he needs to do the wash procedure. That would show if he's had any aspirations (not a concern), take a sample of cells (probably not necessary) and take a culture to see if anything is lingering in his lungs. Mostly we just want to see if there is any inflammation or anything unusual going on which we really don't anticipate, either. We'll also try to upsize his trach to a Shiley 6.0 long which is the next size up. I'm hoping it will help alleviate his plugging and also go a bit longer down which will hopefully ventilate him a little better and make us not so worried that his trach is going to come out. He's had this size for as long as I can remember and he's grown a lot. Tomorrow I speak with anesthesia. Dr. Lahiri knows not to fast SMA kids too long so he's in my corner. He's going to try to talk with them before they call me but he said to tell them to call him directly if there is any problem. I have no problem of giving him just formula, water and juice with no baby foods or supplements during the night and stopping about 4 hours before surgery and then giving him Pedialyte for a while and stopping a couple of hours before surgery. Anyway, I know they won't give me a problem of restarting him right afterwards. Last time he had tubes, and his 'nether region' operated on they let us start up once we felt he was feeling good and not queasy. Boy, this is a long paragraph, sorry!!!
Colin wasn't too cooperative in school today. It started before Mel came to do Music so it wasn't that. Not sure but I think he was just finding it fun to be ornery. He didn't earn a fun break so he did nothing for half an hour instead of watching wii walkthroughs like he usually gets to.
Casey has a pretty good day. But, he wasn't into his Creative Writing class. He had to leave for being too noisy. They decided he would write a letter saying why he didn't like the class. Paula tried to give him some ideas but Casey had his own:
Mrs. Short,
I am upset about class.
I want to go library.
Casey
He really liked the Read, Read, Read class because it was a relaxed atmosphere and was in the library which is one of his favorite places in school. Of course we all told him we understood but sometimes it's good to try new things and see how it goes. So we will persevere and I hope he comes to enjoy it.
Played Skylander's SwapForce for about an hour. We had a tough time defeating one of the bosses...I forget his name but we killed a bunch of our guys before we defeated him, phew!
Casey hasn't been complaining about not being able to do his Google maps. Gene was going to call this afternoon but didn't. I hope Paula can figure it out tomorrow.
Gene went to Costco for vinegar and dog food. It's almost 8 PM and he's not back yet--it's time for bed!
BUT, I did call Dr. Lahiri's office, the pulmonologist who will be doing Casey's bronchoscopy on Monday, in hopes that he'd call me back to chat with me about the procedure. Well, I was writing down my questions when I called and the person said let me see if he's out of clinic. A minute later he was on the phone! I love that our docs are so accessible! We had a nice chat but I didn't ask him all that I wanted to because I hadn't written down all my questions yet, ha ha. Oh well, I'm feeling better about the whole thing. The two worst things will be getting there at an unheard of hour--not sure when exactly, but Casey is the first procedure and they usually start at 7:25, yikes! Secondly, we have to get there early and head to the Comfort Zone to get Casey's IV. Other than that, Dr. Lahiri thinks it will be quick--like 10 minutes. He doesn't anticipate any complications and he's not even sure if he needs to do the wash procedure. That would show if he's had any aspirations (not a concern), take a sample of cells (probably not necessary) and take a culture to see if anything is lingering in his lungs. Mostly we just want to see if there is any inflammation or anything unusual going on which we really don't anticipate, either. We'll also try to upsize his trach to a Shiley 6.0 long which is the next size up. I'm hoping it will help alleviate his plugging and also go a bit longer down which will hopefully ventilate him a little better and make us not so worried that his trach is going to come out. He's had this size for as long as I can remember and he's grown a lot. Tomorrow I speak with anesthesia. Dr. Lahiri knows not to fast SMA kids too long so he's in my corner. He's going to try to talk with them before they call me but he said to tell them to call him directly if there is any problem. I have no problem of giving him just formula, water and juice with no baby foods or supplements during the night and stopping about 4 hours before surgery and then giving him Pedialyte for a while and stopping a couple of hours before surgery. Anyway, I know they won't give me a problem of restarting him right afterwards. Last time he had tubes, and his 'nether region' operated on they let us start up once we felt he was feeling good and not queasy. Boy, this is a long paragraph, sorry!!!
Colin wasn't too cooperative in school today. It started before Mel came to do Music so it wasn't that. Not sure but I think he was just finding it fun to be ornery. He didn't earn a fun break so he did nothing for half an hour instead of watching wii walkthroughs like he usually gets to.
Casey has a pretty good day. But, he wasn't into his Creative Writing class. He had to leave for being too noisy. They decided he would write a letter saying why he didn't like the class. Paula tried to give him some ideas but Casey had his own:
Mrs. Short,
I am upset about class.
I want to go library.
Casey
He really liked the Read, Read, Read class because it was a relaxed atmosphere and was in the library which is one of his favorite places in school. Of course we all told him we understood but sometimes it's good to try new things and see how it goes. So we will persevere and I hope he comes to enjoy it.
Played Skylander's SwapForce for about an hour. We had a tough time defeating one of the bosses...I forget his name but we killed a bunch of our guys before we defeated him, phew!
Casey hasn't been complaining about not being able to do his Google maps. Gene was going to call this afternoon but didn't. I hope Paula can figure it out tomorrow.
Gene went to Costco for vinegar and dog food. It's almost 8 PM and he's not back yet--it's time for bed!
Tuesday, January 14, 2014
Back at it!
I've been wanting to get back to writing here every day. Not sure what stops me. I always think that I want to go back and write about some special days/events before I start the day-to-day blogging and I never do. So I will start here. I was looking for some old pictures of Colin in his stander and looked back at old journal entries from 2006, 2007, etc. and I had many memories sparked by reading them and it's made me want to document more diligently again. I hope I can keep it up!
Today is Aunt Chris' birthday. I made a Devil's Food cake from a mix. Made homemade frosting with Baker's chocolate, powdered sugar, vanilla, milk, Madagascarian vanilla and two ounces of cream cheese to add a little zing. Colin tried the frosting and found it to be pretty yummy. So I had to make her special birthday meatloaf. We also had a can of peas (her favorite, although they weren't the baby LeSueur ones), noodles with broccoli and Italian bread. It all turned out pretty well :)
Anyway, I got Colin ready for school and did all the morning stuff and Lauren came to do a shift with him from 10-6. He was happy to see her. He did stander and was up at 42 degrees for about half an hour. That extra 2 degrees is a good thing as he's not gone up that far for a while.
I managed a nap :) Can't believe how hard I slept. But, first I read some of Emma (Peggy and I are making an effort to read some classics). I'm glad that I didn't live back in the early 1800s. Man, all she cares about is who is 'good enough' to marry who and who shouldn't associate with who, etc. Boring and shallow.
Maria (Casey's SLP/case manager) called today and wanted to know what I thought about him taking Creative Writing instead of Read, Read, Read again. The more we talked about it, the better it seemed. Kathy Montague is the teacher and he has her for English 11 as well, so they'll already be meeting, and it will be continuity for him, etc. I think it could be a good thing. He seems fine with the idea.
Casey's DynaVox is still doing something weird. Gene thought he and the rep had fixed it Monday, but it's still not sending words to the Internet like it's supposed to. I'm kind of confused as to what's going on so we'll see what Paula thinks at school and then I can describe it to DynaVox later today and get it taken care of. Casey hasn't been able to do his Google Maps for a couple of days and it's driving him batty!
Casey had a pretty good day at school. He stayed in English a bit longer than yesterday so maybe he'll ease into it okay.
Lauren played some WiiU Rayman's Legends for a while. It's one of those games that her generation is good at like Mario...I couldn't get past the first little part as I kept dying and would use up all my lives and have to go back, sigh.
Then Aunt Chris played the Lego City Undercover. It really is a cool game and I'd love to play it myself but it's one that she's pretty good at so I'll let her be the player. Of course I have to keep my ear out as to what they're doing and have to help out in certain parts so I guess I get to play it and enjoy it, too.
After dinner it was time for cake and presents. Poor AC didn't get many exiting presents but I used up all my good ideas at Christmas time. I ordered flowers for her at Centerpiece from Mom and Dad and Gene picked them up.
Then it was bedtime. We went in about 15 minutes earlier than normal since Casey was so tired. The boys and I started a new book called Ungifted by Gordon Korman. I think it might be a good one. The boys were sad when we finished the Magic Tree House last night. Found out there's one more out that we'll buy. Casey says we can use his Amazon card. I'm glad that both boys like the Magic Tree House books but one of these days they'll have to get too old for them. They really are already but we've been reading them so long together that it's like "our thing."
Today is Aunt Chris' birthday. I made a Devil's Food cake from a mix. Made homemade frosting with Baker's chocolate, powdered sugar, vanilla, milk, Madagascarian vanilla and two ounces of cream cheese to add a little zing. Colin tried the frosting and found it to be pretty yummy. So I had to make her special birthday meatloaf. We also had a can of peas (her favorite, although they weren't the baby LeSueur ones), noodles with broccoli and Italian bread. It all turned out pretty well :)
Anyway, I got Colin ready for school and did all the morning stuff and Lauren came to do a shift with him from 10-6. He was happy to see her. He did stander and was up at 42 degrees for about half an hour. That extra 2 degrees is a good thing as he's not gone up that far for a while.
I managed a nap :) Can't believe how hard I slept. But, first I read some of Emma (Peggy and I are making an effort to read some classics). I'm glad that I didn't live back in the early 1800s. Man, all she cares about is who is 'good enough' to marry who and who shouldn't associate with who, etc. Boring and shallow.
Maria (Casey's SLP/case manager) called today and wanted to know what I thought about him taking Creative Writing instead of Read, Read, Read again. The more we talked about it, the better it seemed. Kathy Montague is the teacher and he has her for English 11 as well, so they'll already be meeting, and it will be continuity for him, etc. I think it could be a good thing. He seems fine with the idea.
Casey's DynaVox is still doing something weird. Gene thought he and the rep had fixed it Monday, but it's still not sending words to the Internet like it's supposed to. I'm kind of confused as to what's going on so we'll see what Paula thinks at school and then I can describe it to DynaVox later today and get it taken care of. Casey hasn't been able to do his Google Maps for a couple of days and it's driving him batty!
Casey had a pretty good day at school. He stayed in English a bit longer than yesterday so maybe he'll ease into it okay.
Lauren played some WiiU Rayman's Legends for a while. It's one of those games that her generation is good at like Mario...I couldn't get past the first little part as I kept dying and would use up all my lives and have to go back, sigh.
Then Aunt Chris played the Lego City Undercover. It really is a cool game and I'd love to play it myself but it's one that she's pretty good at so I'll let her be the player. Of course I have to keep my ear out as to what they're doing and have to help out in certain parts so I guess I get to play it and enjoy it, too.
After dinner it was time for cake and presents. Poor AC didn't get many exiting presents but I used up all my good ideas at Christmas time. I ordered flowers for her at Centerpiece from Mom and Dad and Gene picked them up.
Then it was bedtime. We went in about 15 minutes earlier than normal since Casey was so tired. The boys and I started a new book called Ungifted by Gordon Korman. I think it might be a good one. The boys were sad when we finished the Magic Tree House last night. Found out there's one more out that we'll buy. Casey says we can use his Amazon card. I'm glad that both boys like the Magic Tree House books but one of these days they'll have to get too old for them. They really are already but we've been reading them so long together that it's like "our thing."
Tuesday, November 5, 2013
Middle School is exhausting! Went to school today with Colin only for the morning. No nurse today so Priscilla (para-eduacator) rode in the back with Colin over to the school. She knows most of his blips and beeps so we're confident to do this. That said, it was more stressful being there without a nurse but we did it!
Colin has his pictures taken and the Lifetouch photographer was very kind and took the time we needed. It was great doing it on re-take day since there wasn't the huge mass of kids and confusion like there is during the initial session. Still won't be the best shot but it's done. I let him have his 'nose pickers' (bipap) on for the first time. Just not worth the stress on him and me to try without.
Saw a bunch of our teacher friends. Picked out a couple of graphic novels in the library (a Scooby Doo and The Olympians: Zeus.
Then we headed upstairs to meet the crew to practice the evacuation plan. The Middle School core classes are all upstairs so we needed to practice. Saw some more teachers and school friends while we were waiting. Colin got to show some of the teachers and kids a picture of him in his scary Halloween costume so that makes him happy.
He got very nervous and his hands were dripping with sweat when we were preparing the sled but did fine and even laughed. We have a 6 person team and could do it with four if we had to, but it wouldn't be pretty :) We have a huge sled that he lays on and we put his vent in there with him. 4 people carry the sled down the stairs and Priscilla is the door opened and carrier of suction. I'm the carrier of the cough assist and rest of the equipment. It's quite a production but we can do it fairly quickly and if we had to, I'd just grab Colin and put the vent on my back and carry him out.
After that, we still had time to catch a good chunk of drama class. Colin got to see two groups perform. He commented three times using his DynaVox! Very proud of him. Mel prompted him to pick his pronoun, verb, etc., and he said, "I liked the fighting." "It was good." and "It was funny." He clicked the speak button right on cue. Proud of him.
Many of his 'regulars' chatted with him and were glad to see him. It still stinks when people who don't know him stop in their tracks and stare at him. We try to take the opportunity to introduce him to new people but circumstances don't always let us. But all in all it was a good day.
Got Colin inside and in his school spot. Priscilla took a quick break and then they finished off the afternoon of school via VGo. I was so pooped out that Gene watched Colin while I took a quick nap. Nugget and I snuggled and had a power nap together.
Casey had an okay day after a meltdown in the morning. Long story but they're trying to find a different spot for him for first block. He had been going to the cafeteria but we were trying to find a spot where he could have some privacy to take off his coat, use the cough assist, etc., and he's balking. He REALLY, really wants to be in the cafeteria with the big study hall. Not sure how it will end up but for now he'll be using a class room where there's a small group going on so he won't be totally away from his peers. This whole year is a work in progress, for sure.
So now Colin is watching a DVRd Celebrity Ghost Story, Casey is Google Mapping with his DynaVox while watching football on his ipad. I have to go start the boys' five o'clock feedings and feed the dogs and cats---Feeding time at the Zoo!!
Colin has his pictures taken and the Lifetouch photographer was very kind and took the time we needed. It was great doing it on re-take day since there wasn't the huge mass of kids and confusion like there is during the initial session. Still won't be the best shot but it's done. I let him have his 'nose pickers' (bipap) on for the first time. Just not worth the stress on him and me to try without.
Saw a bunch of our teacher friends. Picked out a couple of graphic novels in the library (a Scooby Doo and The Olympians: Zeus.
Then we headed upstairs to meet the crew to practice the evacuation plan. The Middle School core classes are all upstairs so we needed to practice. Saw some more teachers and school friends while we were waiting. Colin got to show some of the teachers and kids a picture of him in his scary Halloween costume so that makes him happy.
He got very nervous and his hands were dripping with sweat when we were preparing the sled but did fine and even laughed. We have a 6 person team and could do it with four if we had to, but it wouldn't be pretty :) We have a huge sled that he lays on and we put his vent in there with him. 4 people carry the sled down the stairs and Priscilla is the door opened and carrier of suction. I'm the carrier of the cough assist and rest of the equipment. It's quite a production but we can do it fairly quickly and if we had to, I'd just grab Colin and put the vent on my back and carry him out.
After that, we still had time to catch a good chunk of drama class. Colin got to see two groups perform. He commented three times using his DynaVox! Very proud of him. Mel prompted him to pick his pronoun, verb, etc., and he said, "I liked the fighting." "It was good." and "It was funny." He clicked the speak button right on cue. Proud of him.
Many of his 'regulars' chatted with him and were glad to see him. It still stinks when people who don't know him stop in their tracks and stare at him. We try to take the opportunity to introduce him to new people but circumstances don't always let us. But all in all it was a good day.
Got Colin inside and in his school spot. Priscilla took a quick break and then they finished off the afternoon of school via VGo. I was so pooped out that Gene watched Colin while I took a quick nap. Nugget and I snuggled and had a power nap together.
Casey had an okay day after a meltdown in the morning. Long story but they're trying to find a different spot for him for first block. He had been going to the cafeteria but we were trying to find a spot where he could have some privacy to take off his coat, use the cough assist, etc., and he's balking. He REALLY, really wants to be in the cafeteria with the big study hall. Not sure how it will end up but for now he'll be using a class room where there's a small group going on so he won't be totally away from his peers. This whole year is a work in progress, for sure.
So now Colin is watching a DVRd Celebrity Ghost Story, Casey is Google Mapping with his DynaVox while watching football on his ipad. I have to go start the boys' five o'clock feedings and feed the dogs and cats---Feeding time at the Zoo!!
Thursday, October 17, 2013
A Crappy Day turned Good
Today was the field trip with Colin's team to Northern Lights Rock and Ice. It's an outdoor leadership and challenge facility. I was a little hesitant for Colin to attend because he probably wouldn't be able to much more than observe.
Our PT found out that there was a giant swing that she thought he would be able to do. I stewed over it. Colin has done the giant swing at camp and it's fun but the way he's positioned wasn't ideal. And, at camp there are docs and RTs and nurses and outdoor extreme people who all know their jobs very well and take them very seriously. A lot of time is spent on safety and lots of precautions are taken.
Long story short, it was decided that Colin would use his evac sled or stokes sled and be able to lie down in it with all of equipment. We tried it at home and took pictures. Our PT sent the pics to some of the leaders so they were aware of what entailed Colin to be able to swing. And, she brought the sled over early so they could see it. So, that was settled. We planned to have him go up early so we could make sure he got his activity done before we all pooped out.
Leading up to the day Colin was nervous. He even told Priscilla that he'd rather stay at school and do MATH! But then he got used to the idea and even thought it would be fun :)
OH, and the field trip day coincided with Nurse Nancy's last shift with us. After 12 years of working with Colin she and her husband are leaving Vermont and moving to Florida.
As I said on my Facebook status:
"End of an era here. Nurse Nancy Lanza just finished her last shift here. She was with us for 12 plus years. She started doing baby visits with Colin and eventually became a shift-care nurse when we started getting nursing coverage for him. She and her husband are moving to Florida. We are all very saddened here. We'll get to see her one more time on Tuesday at a little gathering for her but I won't want to say good-bye then, either. Colin says she'll miss her but I don't think he has a clue as to the huge hole that will be in his life without her. She was the best video game player and they conquered lots of Nancy Drew PC games, as well as others. She knows him like a book (well, as much as anyone can figure him out, lol!) and it will be tough goings without her. Of course, we wish her the best :) "
Colin's teachers wanted Colin to go on the bus with the kids so Nancy, Colin and I got a ride over to school in the van by Gene. He was going to drive the van up to Northern Lights later on so we could leave earlier than the kids. We got to school and went to the bus. Yay, there was a handicap bus! But, don't get excited, the lift didn't work. Tried and tried. The bus driver said he had been taught to use it earlier and it worked. I asked him if he knew how to use it manually, and I pointed to the bar that you use. He picked it up and wanted to know where to put it. I won't even go there. I said forget it.
And, yes, the bus company will be getting a letter from me ;-)
The kids were all on the bus and restless. Priscilla was on the bus with our bags while we were outside with the teachers and the bus driver. Priscilla came out, at one point, and said, "Unfortunately, one of the kids wanted to know why Colin had to go." I was pissed. Kids suck sometimes! I said, not very appropriately, "Who is it and I'll kick his ass!" She said it was a girl. Huh. I'd still kick her ass. But, being the diplomat that she is, Priscilla didn't tell me who it was. I was very frustrated and sad and my emotions were already running high because of it being Nancy's last day. Colin was undaunted and was just his happy self. I called Gene and had him come BACK to school with the van so we could drive up. Colin's teacher really wanted to wait and have them send another bus or fix it because "we're a team" and all that and I appreciate that but I didn't want the kids to have to wait any longer.
Gene picked us up and we dropped him back off at our house and we headed up to Northern Lights. We've very lucky it's only about 15/20 minutes from home. We got there not too long after the class. Christina, the PT, met us up there. Colin and Priscilla joined the group while Christina and I chatted with some of the leaders/guides. They were very awesome people--reminded me so much of the staff at Double H. Young and enthusiastic and very in tuned with the kids. AND, they were very excited to include Colin and get the kids to understand INCLUSION.
We broke up into small groups. About 6 kids in our group along with Mr. Dabritz the humanities teacher. Started off with a team building activity. The kids had sections of half pipes and they had to work together as a team to pass a ball around the circle. Lots of talk about teamwork and citizenship and talking things out and including every one.
Colin was also able to participate on the Whale Watch. It's a super huge, rectangular, wooden teeter-totter. They lifted Colin right up onto it and set him in the middle and put his brakes on. The kids had to get on one by one and try to balance it by working out who should go on what side of the teeter totter. They never did get it balanced but had fun trying.
Colin got to watch the kids climb poles and leap off and that kind of thing. Then when the kids were still doing an activity, we went over to the swing area and got Colin settled on his sled and all strapped in. Then the kids came over and the leader had everyone grab onto the sled and lift Colin up so he could get hooked. Then they all gathered around and watched him swing! Colin liked it and enjoyed swinging high in the air and flying through the woods. When he was done, he said, "out, out." Then the leader had the kids hold the sled over their heads while he got unhooked. When he got down, everyone cheered. Again, they talked about inclusion and how people have different abilities but everyone wants to be included.
That was that. It was now lunchtime and we were ready to head home. Gene headed out to go to lunch with Grandma, Grandpa and Julia, and Uncle Bill and Aunt Jean who were visiting from Texas. We headed home to unpack and unwind and get ready for Priscilla to come back and finish the afternoon of school with him.
I hate that Colin (and Casey) is so different than his peers. I honestly think it hurts me more than him. He isn't a very social kid but I'm sure he'd love to have a friend who could understand him and hang out and play wii with him. Someone who would not have any qualms about being around someone who needs to be suctioned, repositioned and basically needs help with everything. But then, again, he's never known anyone like that so maybe he doesn't know what he's missing. I wish I could be that friend, and in a way I am, but I'm still a parent but I am his best friend, too. Casey is his friend/brother, too, but there are many times that Casey annoys him so there are times he'd rather be with me, than Casey, ha ha.
Another thing that Colin has going on for him is that he is emotionally younger than his years. In so many ways he is much more naive than his peers. He tends to like books, movies, shows, toys, that most kids of his age have long forgotten. That's okay with me, too. I get to keep my boy younger for a little while longer. AND, we don't have to deal with the drama of being a pre-teen. But, then again, Colin has been exposed to so many more medical things than most of his peers. How many kids his age have been taken in an ambulance and rushed to the hospital because they 'plugged' and went into respiratory arrest. How many kids have been intubated and spent weeks in the hospital in the PICU. How many kids need to use numerous machines every day to stay healthy. So in this way he is more mature than them.
All of these things add up to my boy being my boy so I'm okay with that. I just wish I could have a tougher exterior so that I wouldn't think about what others think of my boy. I'm okay with him. I wish everyone else could be.
Our PT found out that there was a giant swing that she thought he would be able to do. I stewed over it. Colin has done the giant swing at camp and it's fun but the way he's positioned wasn't ideal. And, at camp there are docs and RTs and nurses and outdoor extreme people who all know their jobs very well and take them very seriously. A lot of time is spent on safety and lots of precautions are taken.
Long story short, it was decided that Colin would use his evac sled or stokes sled and be able to lie down in it with all of equipment. We tried it at home and took pictures. Our PT sent the pics to some of the leaders so they were aware of what entailed Colin to be able to swing. And, she brought the sled over early so they could see it. So, that was settled. We planned to have him go up early so we could make sure he got his activity done before we all pooped out.
Leading up to the day Colin was nervous. He even told Priscilla that he'd rather stay at school and do MATH! But then he got used to the idea and even thought it would be fun :)
OH, and the field trip day coincided with Nurse Nancy's last shift with us. After 12 years of working with Colin she and her husband are leaving Vermont and moving to Florida.
As I said on my Facebook status:
"End of an era here. Nurse Nancy Lanza just finished her last shift here. She was with us for 12 plus years. She started doing baby visits with Colin and eventually became a shift-care nurse when we started getting nursing coverage for him. She and her husband are moving to Florida. We are all very saddened here. We'll get to see her one more time on Tuesday at a little gathering for her but I won't want to say good-bye then, either. Colin says she'll miss her but I don't think he has a clue as to the huge hole that will be in his life without her. She was the best video game player and they conquered lots of Nancy Drew PC games, as well as others. She knows him like a book (well, as much as anyone can figure him out, lol!) and it will be tough goings without her. Of course, we wish her the best :) "
Colin's teachers wanted Colin to go on the bus with the kids so Nancy, Colin and I got a ride over to school in the van by Gene. He was going to drive the van up to Northern Lights later on so we could leave earlier than the kids. We got to school and went to the bus. Yay, there was a handicap bus! But, don't get excited, the lift didn't work. Tried and tried. The bus driver said he had been taught to use it earlier and it worked. I asked him if he knew how to use it manually, and I pointed to the bar that you use. He picked it up and wanted to know where to put it. I won't even go there. I said forget it.
And, yes, the bus company will be getting a letter from me ;-)
The kids were all on the bus and restless. Priscilla was on the bus with our bags while we were outside with the teachers and the bus driver. Priscilla came out, at one point, and said, "Unfortunately, one of the kids wanted to know why Colin had to go." I was pissed. Kids suck sometimes! I said, not very appropriately, "Who is it and I'll kick his ass!" She said it was a girl. Huh. I'd still kick her ass. But, being the diplomat that she is, Priscilla didn't tell me who it was. I was very frustrated and sad and my emotions were already running high because of it being Nancy's last day. Colin was undaunted and was just his happy self. I called Gene and had him come BACK to school with the van so we could drive up. Colin's teacher really wanted to wait and have them send another bus or fix it because "we're a team" and all that and I appreciate that but I didn't want the kids to have to wait any longer.
Gene picked us up and we dropped him back off at our house and we headed up to Northern Lights. We've very lucky it's only about 15/20 minutes from home. We got there not too long after the class. Christina, the PT, met us up there. Colin and Priscilla joined the group while Christina and I chatted with some of the leaders/guides. They were very awesome people--reminded me so much of the staff at Double H. Young and enthusiastic and very in tuned with the kids. AND, they were very excited to include Colin and get the kids to understand INCLUSION.
We broke up into small groups. About 6 kids in our group along with Mr. Dabritz the humanities teacher. Started off with a team building activity. The kids had sections of half pipes and they had to work together as a team to pass a ball around the circle. Lots of talk about teamwork and citizenship and talking things out and including every one.
Colin was also able to participate on the Whale Watch. It's a super huge, rectangular, wooden teeter-totter. They lifted Colin right up onto it and set him in the middle and put his brakes on. The kids had to get on one by one and try to balance it by working out who should go on what side of the teeter totter. They never did get it balanced but had fun trying.
Colin got to watch the kids climb poles and leap off and that kind of thing. Then when the kids were still doing an activity, we went over to the swing area and got Colin settled on his sled and all strapped in. Then the kids came over and the leader had everyone grab onto the sled and lift Colin up so he could get hooked. Then they all gathered around and watched him swing! Colin liked it and enjoyed swinging high in the air and flying through the woods. When he was done, he said, "out, out." Then the leader had the kids hold the sled over their heads while he got unhooked. When he got down, everyone cheered. Again, they talked about inclusion and how people have different abilities but everyone wants to be included.
That was that. It was now lunchtime and we were ready to head home. Gene headed out to go to lunch with Grandma, Grandpa and Julia, and Uncle Bill and Aunt Jean who were visiting from Texas. We headed home to unpack and unwind and get ready for Priscilla to come back and finish the afternoon of school with him.
I hate that Colin (and Casey) is so different than his peers. I honestly think it hurts me more than him. He isn't a very social kid but I'm sure he'd love to have a friend who could understand him and hang out and play wii with him. Someone who would not have any qualms about being around someone who needs to be suctioned, repositioned and basically needs help with everything. But then, again, he's never known anyone like that so maybe he doesn't know what he's missing. I wish I could be that friend, and in a way I am, but I'm still a parent but I am his best friend, too. Casey is his friend/brother, too, but there are many times that Casey annoys him so there are times he'd rather be with me, than Casey, ha ha.
Another thing that Colin has going on for him is that he is emotionally younger than his years. In so many ways he is much more naive than his peers. He tends to like books, movies, shows, toys, that most kids of his age have long forgotten. That's okay with me, too. I get to keep my boy younger for a little while longer. AND, we don't have to deal with the drama of being a pre-teen. But, then again, Colin has been exposed to so many more medical things than most of his peers. How many kids his age have been taken in an ambulance and rushed to the hospital because they 'plugged' and went into respiratory arrest. How many kids have been intubated and spent weeks in the hospital in the PICU. How many kids need to use numerous machines every day to stay healthy. So in this way he is more mature than them.
All of these things add up to my boy being my boy so I'm okay with that. I just wish I could have a tougher exterior so that I wouldn't think about what others think of my boy. I'm okay with him. I wish everyone else could be.
Wednesday, August 29, 2012
We did it! Both boys were ready for their first day of school on time. It definitely was not a fun two hours but we got through.
We got Casey up at about 6:30 which is a little earlier than we got him up last year. One, because it just gives us more time, and two because the night nurse hasn't had a lot of 'readying for school'. A couple of screwy things happened (plug on Casey's suction machine wasn't in his room), couldn't find his tray, etc. Oh, and then the chair was doing weird things and Nancy and I were getting a little stressed :) . For some weird reason the display kept showing the red stop/kill button. Somehow we got out of it. He didn't seem too nervous but I'll bet he was. New bus driver. I didn't meet him but Gene helped get him on the bus.
Just before Casey was set, I started Colin's saline neb and shakey vest. He was very quiet and didn't seem too mad to be up so early. After Casey was out the door, I started in on the little things to do, like making Casey's bed for him to do his school on, meds, water, clothes, etc. Cristy came at 7:30 so all she had to do was get him washed up, coughed and dressed. At about 7:30 we pulled up Skype on the ipad and tuned into school. We made sure we could see and hear them but they couldn't see or hear us. Colin will be missing about the first half hour of school each day but what can ya do??? This way we'll hear a little bit of what's going on.
Tuesdays and Thursdays are going to be rough. Cristy is going to start work with Colin at 7:00 so that will ease the burden a lot. But, Nancy L will be coming at 8:00, as far as I know, so that puts a lot of pressure on me!
It was Grand Central Station here this morning for phone calls, school, VNA, etc., but it quieted down later. I was able to complete some paperwork this afternoon, yay!
Casey had a very good day. Good start to the year. Mel was very happy with him! He was pretty appropriate and used his DynaVox well, and drove his chair a lot. Yay! The new personal space is going to be great. Casey has some of his old buddies on his team this year, and he has his precious Mariah.
Colin did pretty well. He has lots of new teachers and a completely different kind of schedule and he hung in there through it all. I did hear a lot of "ows" and whines at a couple of segments of the day but I think he did okay.
Gene cooked up Karen's chicken in the crockpot today. I made some noodles and green beans and we had a real dinner!
Casey just had a shower and they're both snuggled in bed now. I'm anticipating that they'll both be asleep soon.
Oh, tomorrow Kinney Drugs will have the Gentian Violet ordered in for Casey. He definitely has thrush on his tongue. Hopefully, that will kick it and we won't have to go in to the doc and get a script for oral Nystatin.
We got Casey up at about 6:30 which is a little earlier than we got him up last year. One, because it just gives us more time, and two because the night nurse hasn't had a lot of 'readying for school'. A couple of screwy things happened (plug on Casey's suction machine wasn't in his room), couldn't find his tray, etc. Oh, and then the chair was doing weird things and Nancy and I were getting a little stressed :) . For some weird reason the display kept showing the red stop/kill button. Somehow we got out of it. He didn't seem too nervous but I'll bet he was. New bus driver. I didn't meet him but Gene helped get him on the bus.
Just before Casey was set, I started Colin's saline neb and shakey vest. He was very quiet and didn't seem too mad to be up so early. After Casey was out the door, I started in on the little things to do, like making Casey's bed for him to do his school on, meds, water, clothes, etc. Cristy came at 7:30 so all she had to do was get him washed up, coughed and dressed. At about 7:30 we pulled up Skype on the ipad and tuned into school. We made sure we could see and hear them but they couldn't see or hear us. Colin will be missing about the first half hour of school each day but what can ya do??? This way we'll hear a little bit of what's going on.
Tuesdays and Thursdays are going to be rough. Cristy is going to start work with Colin at 7:00 so that will ease the burden a lot. But, Nancy L will be coming at 8:00, as far as I know, so that puts a lot of pressure on me!
It was Grand Central Station here this morning for phone calls, school, VNA, etc., but it quieted down later. I was able to complete some paperwork this afternoon, yay!
Casey had a very good day. Good start to the year. Mel was very happy with him! He was pretty appropriate and used his DynaVox well, and drove his chair a lot. Yay! The new personal space is going to be great. Casey has some of his old buddies on his team this year, and he has his precious Mariah.
Colin did pretty well. He has lots of new teachers and a completely different kind of schedule and he hung in there through it all. I did hear a lot of "ows" and whines at a couple of segments of the day but I think he did okay.
 |
| Thank you, MJ for pic monkeying our photo! |
Gene cooked up Karen's chicken in the crockpot today. I made some noodles and green beans and we had a real dinner!
Casey just had a shower and they're both snuggled in bed now. I'm anticipating that they'll both be asleep soon.
Oh, tomorrow Kinney Drugs will have the Gentian Violet ordered in for Casey. He definitely has thrush on his tongue. Hopefully, that will kick it and we won't have to go in to the doc and get a script for oral Nystatin.
Thursday, September 1, 2011
Full day #1 and hair cut
Well, I had a good day; can't say the same for the boys. Casey had a very loud day at school. Mel said that she couldn't really blame him since everything was brand new and very disjointed.
Colin had some good parts, and not so good parts, of his day. He closed his eyes quite a bit and did lots of 'owing'.
I met AC at her house and we went to The Hair Studio. She had her eyebrows done by Kathy and I had my hair cut by Margie. Ahhhh! She cut it in layers and shortened it up a bit and was excited about my 'natural wave'. I never thought of myself as having wavy hair but in my old age it seems to have become somewhat wavy. We'll see how it looks after I wash it and brush it out tomorrow!
Then we went to Chef's Corners. Delicious chicken salad sandwich on homemade wheat bread, side salad and iced tea. We got dessert to go. I picked a triple nut bar---so sweet and nutty and very scrumptious!
I was feeling badly for not buying any new clothes for Casey's start of 9th grade so AC and I went over to Old Navy. I found a pair of black jeans but that's about it. They had way more girls and womens' clothing than boys. I had a $10 gift card so the jeans were $5.
Still had some time left so we hit Kohls. Hit the jackpot there. Found Casey some tan jean-like pants and some gray parachute kind of pants. I also found 2 long sleeved shirts and a maroon short sleeved one. I used my gift card and 15% coupon and got a great deal.
Headed home after that. Oh, wait, I got to see AC's new paint job in her living room. She had 3 walls painted a pretty blue. I helped her put back some of the switch plates and move the china cabinet back into place.
Colin had some good parts, and not so good parts, of his day. He closed his eyes quite a bit and did lots of 'owing'.
I met AC at her house and we went to The Hair Studio. She had her eyebrows done by Kathy and I had my hair cut by Margie. Ahhhh! She cut it in layers and shortened it up a bit and was excited about my 'natural wave'. I never thought of myself as having wavy hair but in my old age it seems to have become somewhat wavy. We'll see how it looks after I wash it and brush it out tomorrow!
Then we went to Chef's Corners. Delicious chicken salad sandwich on homemade wheat bread, side salad and iced tea. We got dessert to go. I picked a triple nut bar---so sweet and nutty and very scrumptious!
I was feeling badly for not buying any new clothes for Casey's start of 9th grade so AC and I went over to Old Navy. I found a pair of black jeans but that's about it. They had way more girls and womens' clothing than boys. I had a $10 gift card so the jeans were $5.
Still had some time left so we hit Kohls. Hit the jackpot there. Found Casey some tan jean-like pants and some gray parachute kind of pants. I also found 2 long sleeved shirts and a maroon short sleeved one. I used my gift card and 15% coupon and got a great deal.
Headed home after that. Oh, wait, I got to see AC's new paint job in her living room. She had 3 walls painted a pretty blue. I helped her put back some of the switch plates and move the china cabinet back into place.
Subscribe to:
Posts (Atom)