I've gotta give Gene credit here. Every year we make the rounds of several Christmas Bazaars. Gene is usually one of the only guys at these--besides the priests, ha ha. Usually they are held the first day of deer season but this year they were a week early. Anyway, he has to give up most of his day to drive us around, get the boys in and out of the van, and traipse around crowded church halls looking at Christmas things and mostly girly stuff--and he doesn't complain. So, thank you, dear. I really look forward to our tradition each year.
We headed out later than normal since we had the boys last night. Casey was a PERFECT sleeper. He didn't ask to be flipped once. And, he didn't complain or even notice whenever I got in and out of bed and smooshed his feet :) Colin, on the other hand, was a rotten sleeper. He was restless and then the Trilogy started beeping for 'disconnect.' He was using the Mirage FX mask and sometimes the side cave in and it leaks. After a bunch of times getting up and fixing the mask, I finally swapped it out with the Wisp and he slept better.
I went up to bed for an hour or so this morning after getting up early, letting the dog out, feeding the dog, feeding the cats, giving the boys morning meds and starting the dishwasher...I try not to wake up too much while I do all that so I can fall asleep pretty quickly and it works :)
Nancy H came at 9:00. Let the boys have a morning movie--Elf. Then it was time to get the boys up and washed and dressed and in their chairs. Aunt Chris came here to ride with us. And we headed out. Gas, ATM and finally we were ready for the bazaars.
We hit the Holy Family bazaar at the rec center first. Maybe next year the new hall will finally be finished...Found a couple of books for the boys. Colin picked out some sort of angel for me but I won't know which one until Christmas! I found a pretty Christmas wreath pin for 50 cents. Got some raffle tickets, some baked goodies and we were off to the next one. Oh, Casey was very cooperative and did not 'yell' so that was a bonus.
Next we went to the Congregational Church. Judy, Aunt Chris's friend was working the door so it was nice to be greeted by someone we know. They have the nicest people at this church--everyone is so nice and accommodating. I think the building used to be a house and it is very cool, unless you're in a wheel chair or can't use the stairs. Lots of different levels and little rooms everywhere. We were able to fit one boy and two of us on the first elevator. The second one was a little trickier as it's very tiny. Gene got Casey in and sent him down by himself--don't worry--it's kind of an open elevator and there are only about 5 stairs right next to the elevator. He thought it was cool. We didn't think we could get Colin on it since his chair is so long so we left Gene with Colin while we checked out some of the other rooms of crafts and food. After a little while we see Colin and Gene laughing and snickering because he got him in the elevator! Colin loved it--he was very excited that he got to go in it by himself and that he had to sit WAY up--like he never does. Found a couple of goodies. Got a gift for Aunt Julia. Colin loved the ride up the elevator again. I wish I had my camera with me. We NEVER sit him up like that and boy, does he look big!!
Then we went to Saint James. We didn't bring the boys in. Two was enough for them (although Colin really would have liked to go but he was in front of Casey in the van). Alaina wasn't there this year with her mosaic cards but it was a nice time anyway. They have the best raffle baskets there. We've won one or two before and hope we're lucky again this year. We were there pretty late so we were able to snag some cookies for 25 cents each, yum!
Headed home after that. Tuckered out. Crazy because we only went to three bazaars but it's a lot of work and stress with the boys--physically having to get them in and out, pushing them up ramps, over thresholds and trying to avoid running into people and things. Mentally worrying about sick people, worrying that the boys would be stared at, etc. But that's part of daily life living with SMA.
Chilled out for the rest of the afternoon. Google mapping, football on the ipad, scary shows and X-Factor.
Saturday, November 9, 2013
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.
Monday, September 23, 2013
It has arrived...
The cold bug has arrived at our house. Casey has it. Both Nurse Julie and Nurse Staci came down with colds this weekend (they weren't here over the weekend but were here earlier in the week),
Casey had an ear infection starting around Friday morning...Pretty yucky, some blood and some blobs of mucous came out...so maybe that was his start. But, he was pretty much fine all weekend respiratory-wise but he was kind of fussy and restless Friday night but slept like a log on Saturday night. Last night you could start to hear his voice changing and getting a bit froggy. This morning he insisted he was fine but he was definitely starting to get drippy when he was at school.
So far he's hanging in there. He's needed more coughing and we're just getting thin stuff out. Funny how his oxygen levels stay between 98-100% when he's got 'junk in his trunk.' His heartrate is definitely elevated. He asked to go to bed early and listen to music so that's where he is now. He says he feels hot but his temp is fine. Parts of his body are icy cold while others feel hot to the touch. His nose is dripping and his eyes are watering. I just loaded him up with some Airborne, Tylenol and some decongestant. He's listening to the radio and watching America's Funniest Home Videos and humming/moaning/vocalizing like he feels yucky.
I guess it's no school for him tomorrow. Bummer, because PT and OT were going to work on making a special splint for his switch.
And, Colin, Nurse Nancy and I were supposed to go in for Picture Day and to try out the evacuation plan. But, I've heard lots of kids are sick. (Colin and Casey are in different schools) We could just go in for the pics and the evac and then go home and not go to any classes but still....there's always Make Up Picture Day but that falls in the yuckier sicker season. Sigh.
On another note. I went to my primary today about the ringing in my ears. I've been noticing it lately but I could have had it for years and just not noticed/put it out of my mind. It's been really bugging me lately though. We live near a pond and in the summer we can hear the 'peepers' at night when the windows are open. It's a sound I used to love but now I hear it ALL the time! Imagine hearing peepers day in and day out. Not fun. If I'm really busy I don't notice it much--it's mostly at night when I lay down and I try to sleep. But it's been creeping into my my daytime life now.
I took a hackneyed hearing test (it looked archaic and one nurse was showing the other nurse so it was kind of weird) which showed my hearing is good. No ear wax, no fluid. It's just one of those things that happen sometimes when you get old. Maybe I'll be lucky enough that it will just go away and not get worse.
Casey had an ear infection starting around Friday morning...Pretty yucky, some blood and some blobs of mucous came out...so maybe that was his start. But, he was pretty much fine all weekend respiratory-wise but he was kind of fussy and restless Friday night but slept like a log on Saturday night. Last night you could start to hear his voice changing and getting a bit froggy. This morning he insisted he was fine but he was definitely starting to get drippy when he was at school.
So far he's hanging in there. He's needed more coughing and we're just getting thin stuff out. Funny how his oxygen levels stay between 98-100% when he's got 'junk in his trunk.' His heartrate is definitely elevated. He asked to go to bed early and listen to music so that's where he is now. He says he feels hot but his temp is fine. Parts of his body are icy cold while others feel hot to the touch. His nose is dripping and his eyes are watering. I just loaded him up with some Airborne, Tylenol and some decongestant. He's listening to the radio and watching America's Funniest Home Videos and humming/moaning/vocalizing like he feels yucky.
I guess it's no school for him tomorrow. Bummer, because PT and OT were going to work on making a special splint for his switch.
And, Colin, Nurse Nancy and I were supposed to go in for Picture Day and to try out the evacuation plan. But, I've heard lots of kids are sick. (Colin and Casey are in different schools) We could just go in for the pics and the evac and then go home and not go to any classes but still....there's always Make Up Picture Day but that falls in the yuckier sicker season. Sigh.
On another note. I went to my primary today about the ringing in my ears. I've been noticing it lately but I could have had it for years and just not noticed/put it out of my mind. It's been really bugging me lately though. We live near a pond and in the summer we can hear the 'peepers' at night when the windows are open. It's a sound I used to love but now I hear it ALL the time! Imagine hearing peepers day in and day out. Not fun. If I'm really busy I don't notice it much--it's mostly at night when I lay down and I try to sleep. But it's been creeping into my my daytime life now.
I took a hackneyed hearing test (it looked archaic and one nurse was showing the other nurse so it was kind of weird) which showed my hearing is good. No ear wax, no fluid. It's just one of those things that happen sometimes when you get old. Maybe I'll be lucky enough that it will just go away and not get worse.
Sunday, September 15, 2013
Flu shots and tube changes and sleep
Just a quickie.
Both boys got their flu shots on Friday the 13th. I hope that's not a bad omen. Nancy L went and picked them up at Dr. Queyquep's office and gave them. Casey was a champ. Colin had crocodile tears in anticipation and then he was completely fine when it was given and over. He still got a Veggie Tales Band-aide to help him feel better after the ordeal.
Saturday morning the boys slept in until after noon. CRAZY! Not sure how much sleep they got but I'm guessing about 14 hours. They wake a bit with their nighttime cares and such but fall right back to sleep but it's still not quite straight sleep. I actually was getting a bit bored so I decided to have lunch. Usually the minute I touch food the boys need something or the phone rings. Today--nothing. I ate in peace (except for the cats and dogs staring at me).
Mic-key button (g-tube) changes were next. Casey's went quickly and smoothly by Dada. Colin requested me to do his so I tried. I'm pretty squeamish about it which didn't make it easier. Gene had to take over since it didn't go in so smoothly. For some reason Colin's has always been a little trickier to replace. I still remember the tough change back in 2005 when I was on the phone with Karen freaking out because Gene couldn't get it in. I have a list of dates/person changing tube/how it went in each of the boys charts.
Casey had a tub bath and then a trach change. It was about a week early but he had been having some deep stuff so we decided to do it a week early. Came out clean. I know it's weird--for those people who know about trachs--but we only change Casey's trach once a month unless we feel something is going on and he needs it sooner. And, actually, we did do that once or twice this summer and got yucky plugs out attached to the bottom of the trach but that's not a regular occurrence.
I got a lot accomplished while they slept. I actually feel good about what I got done this weekend and it's still only Sunday morning. Gene went out and bought some boards to make the trim and window sills in the kitchen/entryway. It's only been about 3 or so years since we had the windows replaced. We'll see how far he gets with the trim.
Colin woke early this morning and was humming to himself for a long time. Not ready to be up for the day so added a blanket and snuggled him in and he was happy for a long time. Casey 'blew' at about 9:30 so the day has begun. Colin requested Batman and Casey requested football on the ipad. That's where we're at.
Both boys got their flu shots on Friday the 13th. I hope that's not a bad omen. Nancy L went and picked them up at Dr. Queyquep's office and gave them. Casey was a champ. Colin had crocodile tears in anticipation and then he was completely fine when it was given and over. He still got a Veggie Tales Band-aide to help him feel better after the ordeal.
Saturday morning the boys slept in until after noon. CRAZY! Not sure how much sleep they got but I'm guessing about 14 hours. They wake a bit with their nighttime cares and such but fall right back to sleep but it's still not quite straight sleep. I actually was getting a bit bored so I decided to have lunch. Usually the minute I touch food the boys need something or the phone rings. Today--nothing. I ate in peace (except for the cats and dogs staring at me).
Mic-key button (g-tube) changes were next. Casey's went quickly and smoothly by Dada. Colin requested me to do his so I tried. I'm pretty squeamish about it which didn't make it easier. Gene had to take over since it didn't go in so smoothly. For some reason Colin's has always been a little trickier to replace. I still remember the tough change back in 2005 when I was on the phone with Karen freaking out because Gene couldn't get it in. I have a list of dates/person changing tube/how it went in each of the boys charts.
Casey had a tub bath and then a trach change. It was about a week early but he had been having some deep stuff so we decided to do it a week early. Came out clean. I know it's weird--for those people who know about trachs--but we only change Casey's trach once a month unless we feel something is going on and he needs it sooner. And, actually, we did do that once or twice this summer and got yucky plugs out attached to the bottom of the trach but that's not a regular occurrence.
I got a lot accomplished while they slept. I actually feel good about what I got done this weekend and it's still only Sunday morning. Gene went out and bought some boards to make the trim and window sills in the kitchen/entryway. It's only been about 3 or so years since we had the windows replaced. We'll see how far he gets with the trim.
Colin woke early this morning and was humming to himself for a long time. Not ready to be up for the day so added a blanket and snuggled him in and he was happy for a long time. Casey 'blew' at about 9:30 so the day has begun. Colin requested Batman and Casey requested football on the ipad. That's where we're at.
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