We had a treat today. Nurse Lauren was able to do a shift and worked 10-6. So I had early-morning-get-Colin-ready-for-school-duty. When he was settled into school I decided to make some cookies for Casey's meeting so I devastated the kitchen throwing ingredients around. I ended up making sugar cookies with homemade butter cream frosting with 3 different kinds of sprinkles. Yum.
Had to call Maria (Casey's case manager) to get the meeting moved to a bit of a later time because Gene's meeting got changed and he had to be at the plant. We ALWAYS have 2 people at home with the boys (although Gene and I will stay by ourselves with the boys sometimes). So instead of having Casey at the meeting like we had planned, he came home on the bus like normal so he and Julie would be here as back up for Lauren and Colin.
Aunt Chris (AC) and I headed out to the meeting with the cookies. The cookies were very well received :) It was a good meeting. Got some things mapped out for Casey's outings, math objectives, plans for when Nancy will be out having her knee fixed, etc. Julie was okay with staying late so that was a good thing.
Lauren made formula while AC and I worked on some Lego City Undercover.
Thursday, January 30, 2014
Wednesday, January 29, 2014
Another Wednesday
Today was a pretty average day.
I tried to get some little things done that I've been putting off. Pretty successful. Laundry, kitchen, straightening, etc.
Colin was pretty good in school today. Emily, his intensive needs teacher, came for her time after school today and he was a little crazy for her. I guess she wanted to know if he'd like to write an email to Meghan Smith (a consulting teacher that works with his team) and see if she could come over to help him and Priscilla with some compute stuff (getting things together for his Humanities project and his Science Fair project) and he kind of flipped out (well, for him that means saying "no, no, no" and getting all big-eyed). He's funny that way. He likes things to be a certain way and having her come to his house was not the normal way he sees her. He usually sees her over the VGo robot or on Skype.
Oh, I did a little videoing of Colin and Priscilla doing the start of their science fair project. He had to drop and time 4 different objects from the same height.
Casey had a tough day and he was very loud. Paula (his para) was out unexpectedly and he had someone who hadn't been training on any of his schedule or DynaVox. He knows her, but not in the way of being his para. So, that threw him for a loop and I'm sure it threw her for a loop, too. Poor Nancy came home all worn out, ha ha.
Julia came and dusted/cleaned Casey's room so that's a good thing. She also took care of a bunch of the avocados that Mel's in-laws had sent up to the boys to add to their formula. She gets the good meat out of the avocado, puts it in the food processor, blends them to a mush, puts them in little med cups and then into a Tupperware and then into the freezer for future use. It's a time consuming project but good to get done.
Gene worked from home today. He also made his concoction of 2 different kinds of sausages, purple cabbage, potatoes and apples. He does it in the dutch oven and it comes out pretty well. He sent some home with Julia for Grandma and Grandpa, Julia had some, I did, AC did and Gene did...batch was almost gone!
AC came and had me work on the Lego game where they got stuck yesterday. Finally figured it out and we made some progress. Colin was very happy. Casey did some maps--hmm, I don't think he even asked for football on the ipad all evening.
I tried to get some little things done that I've been putting off. Pretty successful. Laundry, kitchen, straightening, etc.
Colin was pretty good in school today. Emily, his intensive needs teacher, came for her time after school today and he was a little crazy for her. I guess she wanted to know if he'd like to write an email to Meghan Smith (a consulting teacher that works with his team) and see if she could come over to help him and Priscilla with some compute stuff (getting things together for his Humanities project and his Science Fair project) and he kind of flipped out (well, for him that means saying "no, no, no" and getting all big-eyed). He's funny that way. He likes things to be a certain way and having her come to his house was not the normal way he sees her. He usually sees her over the VGo robot or on Skype.
Oh, I did a little videoing of Colin and Priscilla doing the start of their science fair project. He had to drop and time 4 different objects from the same height.
Casey had a tough day and he was very loud. Paula (his para) was out unexpectedly and he had someone who hadn't been training on any of his schedule or DynaVox. He knows her, but not in the way of being his para. So, that threw him for a loop and I'm sure it threw her for a loop, too. Poor Nancy came home all worn out, ha ha.
Julia came and dusted/cleaned Casey's room so that's a good thing. She also took care of a bunch of the avocados that Mel's in-laws had sent up to the boys to add to their formula. She gets the good meat out of the avocado, puts it in the food processor, blends them to a mush, puts them in little med cups and then into a Tupperware and then into the freezer for future use. It's a time consuming project but good to get done.
Gene worked from home today. He also made his concoction of 2 different kinds of sausages, purple cabbage, potatoes and apples. He does it in the dutch oven and it comes out pretty well. He sent some home with Julia for Grandma and Grandpa, Julia had some, I did, AC did and Gene did...batch was almost gone!
AC came and had me work on the Lego game where they got stuck yesterday. Finally figured it out and we made some progress. Colin was very happy. Casey did some maps--hmm, I don't think he even asked for football on the ipad all evening.
Monday, January 27, 2014
Handsome Casey
Casey has been picking out his shirts for school but today I wanted to make sure he looked extra spiffy so I picked out his new sweater and jeans that he got for his birthday. Who is more handsome than Casey?
Casey went to the AT Tryout Center for the first time today. I guess it was okay but Julie said that when they saw him they said, "oh, you have a DynaVox and a nice switch set up" already. They didn't have much for him to try. I had hoped they might have some switches (we're always looking for alternatives 'just because.') and I had hope they might have an eye gaze system to try. I mean, Casey has one but I was hoping to try a different one and/or that they'd have some tricks to use with his current one. Actually, he has his EyeMax but it's not hooked up right now. I'll be putting it back on this weekend--wanted to make sure his 'fixed' DynaVox had everything loaded back up on it before I put it on just so it would have less of a chance of getting banged around...Anyway, he liked being there and had fun hanging out there (and possibly not having to do school work???)
Julie took this picture of him and a giant timer just like the little one he uses.
Julie took this picture of him and a giant timer just like the little one he uses.
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| He said, "Take timer home." :) |
Sunday, January 26, 2014
We did the mall
I was up earlier than I needed to be today. Deb was here until 8 AM but I couldn't sleep so I got up and started in on the day. Made formula for the night at 8 AM. (Colin's new day starts at 8 PM and Casey's at 10 PM--and they get a certain volume of food in 24 hours) We usually don't make formula until afternoon but since we were going out, I figured it would be good to get it done early. Laundry, straightening up, etc.
After Gene got up I took a shower and then it was straight out getting everyone ready as we were planning on leaving to go to the mall at 11:00. Well, that didn't happen but that's okay. Nurse Julie did an extra shift today, coming in at 11:00 to treat Casey to some birthday gifts at the mall. Colin got a shower. Casey got cleaned up and dressed. Got everyone in their chairs and BUNDLED up as it was frigid and we were out of here at 11:45.
Met AC at the mall. Colin wanted to do his regular routine; FYE, GameStop and then hang out with Dad...they usually end up at the food court as Dad likes Taco Bell :)
Colin found some Skylanders Swap Force on sale buy one get one half off so he picked two. Didn't really see any movies so he headed over to GameStop. Casey and Julie were in there and he had picked a wii u Sponge Bob game out. Colin found some monkey game and Batman Arkham Origins. I hope Batman isn't too complicated to play. Colin has watched the walkthrough a couple of time so he may be able to guide us. We ask him Yes and No questions and he'll answer us and if we don't get it right he'll yell until we do!
Traded in a bunch of games, pre-ordered the Lego Movie game, picked out one of the bigger SwapForce characters, renewed the Power Up card and we were finally out of there. I'll say it again--we always have a great experience at GameStop. The employees are so nice, knowledgeable and helpful and don't make you feel rushed.
Casey and Julie continued on their jaunt. Gene, Colin and AC went to the food court and I ran to Kohl's. I had a 30% coupon in my pocket that was burning a hole. Headed right to the woman's stuff instead of checking the boy stuff. Picked up a pair of jeans but didn't try them on (ended up picking up the wrong size) and found two spring jackets that I liked. I got both! One is a cobalt blue short lightly puffy jacket, and one is a spring green hip length wind/rain kind of jacket with a detachable hood. I had been looking for a wind/rain one for a while now, ever since a mouse had nibbled on it a couple of years ago when it was packed in the closet for the season. I also found something for AC for Valentine's Day but won't write what it is here.
Met up with the food court people. Colin was happy as a clam playing with Daddy's hot sauce packet. I got a caramel Coolata which is a splurge for me. Yum.
Found Casey and Julie and regrouped. Then it was time to head out. Julie was proud of Casey as he did some good driving. He stopped in front of the tee shirt place and said, "tee shirt ...well, I'll have to get the story from Julie again but he got his point across as to what he wanted. He picked out a black shirt with a Boston Bruins logo on it but with the shape of Vermont in the middle of it.
Home. Get everyone settled in the living room. Julie played the new Sponge Bob game and a bit of the Monkey game. I ended up playing a chapter of Skylander's and it was the hardest yet! Crazy hard! We must have killed 12 of our guys before I finally beat the level.
We watched a bit of the ProBowl and then I DVRd the rest. Even Colin was liking it. He's been enjoying football these past couple of weeks, now that the season is ending, oh well.
After Gene got up I took a shower and then it was straight out getting everyone ready as we were planning on leaving to go to the mall at 11:00. Well, that didn't happen but that's okay. Nurse Julie did an extra shift today, coming in at 11:00 to treat Casey to some birthday gifts at the mall. Colin got a shower. Casey got cleaned up and dressed. Got everyone in their chairs and BUNDLED up as it was frigid and we were out of here at 11:45.
Met AC at the mall. Colin wanted to do his regular routine; FYE, GameStop and then hang out with Dad...they usually end up at the food court as Dad likes Taco Bell :)
Colin found some Skylanders Swap Force on sale buy one get one half off so he picked two. Didn't really see any movies so he headed over to GameStop. Casey and Julie were in there and he had picked a wii u Sponge Bob game out. Colin found some monkey game and Batman Arkham Origins. I hope Batman isn't too complicated to play. Colin has watched the walkthrough a couple of time so he may be able to guide us. We ask him Yes and No questions and he'll answer us and if we don't get it right he'll yell until we do!
Traded in a bunch of games, pre-ordered the Lego Movie game, picked out one of the bigger SwapForce characters, renewed the Power Up card and we were finally out of there. I'll say it again--we always have a great experience at GameStop. The employees are so nice, knowledgeable and helpful and don't make you feel rushed.
Casey and Julie continued on their jaunt. Gene, Colin and AC went to the food court and I ran to Kohl's. I had a 30% coupon in my pocket that was burning a hole. Headed right to the woman's stuff instead of checking the boy stuff. Picked up a pair of jeans but didn't try them on (ended up picking up the wrong size) and found two spring jackets that I liked. I got both! One is a cobalt blue short lightly puffy jacket, and one is a spring green hip length wind/rain kind of jacket with a detachable hood. I had been looking for a wind/rain one for a while now, ever since a mouse had nibbled on it a couple of years ago when it was packed in the closet for the season. I also found something for AC for Valentine's Day but won't write what it is here.
Met up with the food court people. Colin was happy as a clam playing with Daddy's hot sauce packet. I got a caramel Coolata which is a splurge for me. Yum.
Found Casey and Julie and regrouped. Then it was time to head out. Julie was proud of Casey as he did some good driving. He stopped in front of the tee shirt place and said, "tee shirt ...well, I'll have to get the story from Julie again but he got his point across as to what he wanted. He picked out a black shirt with a Boston Bruins logo on it but with the shape of Vermont in the middle of it.
Home. Get everyone settled in the living room. Julie played the new Sponge Bob game and a bit of the Monkey game. I ended up playing a chapter of Skylander's and it was the hardest yet! Crazy hard! We must have killed 12 of our guys before I finally beat the level.
We watched a bit of the ProBowl and then I DVRd the rest. Even Colin was liking it. He's been enjoying football these past couple of weeks, now that the season is ending, oh well.
Saturday, January 25, 2014
Quiet Saturday
Not much happened today. Boys slept in a bit, which was good because I needed to head upstairs at 7 AM and get some sleep while Gene snoozed with the boys. Casey was very restless last night and needed turning every 45 minutes or so. I finally gave him Tylenol, which seemed to help, and I wish I had done it earlier. Colin slept like a rock :)
Nancy H here at 2. Casey had a shower. Colin watched his shows. Nancy played Poptropica. Casey flipped channels and Google mapped. Gene went out and did his thing. I puttered and did laundry. Boys beds got changed and formula made.
Sorry so boring!!
Nancy H here at 2. Casey had a shower. Colin watched his shows. Nancy played Poptropica. Casey flipped channels and Google mapped. Gene went out and did his thing. I puttered and did laundry. Boys beds got changed and formula made.
Sorry so boring!!
Friday, January 24, 2014
I went out on a date by myself!!
This evening I went to the high school and watched a screening of Northern Borders. Northern Borders is a book written by Howard Frank Mosher one of my favorite authors. He lives in the North East Kingdom not too far from where my parents lived back in the 80s and 90s. Anyway, Jay Craven has adapted many of his books into movies and this was one of my favorites so I was excited to hear that they were having a viewing in town. And, it was a fundraiser for Project Graduation so that makes it even better.
Maybe 40 or so people attended. Jay was there to introduce the movie and answer questions and talk about his films afterwards. That made it even more exciting to me as it added so much flavor to the evening. The movie was great--it did the book justice although it really only captured one time period of the book which was when the main character was young and came to live with his grandparents in rural Vermont. I won't blab on about it here but if you're looking for some good reads I'd recommend any of Mosher's books. See my links below.
Oh, and what I liked most about Jay Craven is that he talked about why he did movies like these and did them the way he did. He says he believes that Hollywood shouldn't get all the credit for making good, likeable, profitable movies. He likes making these regional movies to show that this can be done. Another interesting point is that he does these on a low budget (but they don't look that way) and he does them in conjunction with colleges around the east. Students come to Marlborro College from other colleges to get credit and work and learn with these projects. Pretty exciting stuff for a college kid, for sure.
Howard Frank Mosher's Site
Northern Borders Kingdom County Productions
Maybe 40 or so people attended. Jay was there to introduce the movie and answer questions and talk about his films afterwards. That made it even more exciting to me as it added so much flavor to the evening. The movie was great--it did the book justice although it really only captured one time period of the book which was when the main character was young and came to live with his grandparents in rural Vermont. I won't blab on about it here but if you're looking for some good reads I'd recommend any of Mosher's books. See my links below.
Oh, and what I liked most about Jay Craven is that he talked about why he did movies like these and did them the way he did. He says he believes that Hollywood shouldn't get all the credit for making good, likeable, profitable movies. He likes making these regional movies to show that this can be done. Another interesting point is that he does these on a low budget (but they don't look that way) and he does them in conjunction with colleges around the east. Students come to Marlborro College from other colleges to get credit and work and learn with these projects. Pretty exciting stuff for a college kid, for sure.
Howard Frank Mosher's Site
Northern Borders Kingdom County Productions
Thursday, January 23, 2014
Casey turns 17!!!
Seventeen!
Casey is 17 today! It's hard for me to wrap my head around being old
enough to have a child that is 17, let alone knowing that when Casey was
diagnosed with SMA type 1, no professionals thought he'd be here today.
Of course we were scared over the years, and those first 3 years were
extremely rough, but we never let the diagnosis dictate to us. Casey
has done so many things in his life that many 'typical' kids have not
done; zip lined, touched a whale, ridden rides at Disney, been to Fenway
Park to see the Red Sox-twice, concerts, road trips, etc, and we will
continue to LIVE and enjoy our lives that happen to have SMA entwined in
it. Happy Birthday to our BIGGEST!
I think that between my Facebook page and Casey's we must have over a hundred birthday wishes for Casey! Thank you, Cashel Gardner for posting birthday wishes on SMA It Forward because he got tons of birthday wishes from Cashel's friends. Very heartwarming to think that someone will take a bit of time out of their day to think of my boy and wish him a happy day!
Made Casey a Red Velvet cake. I was going to use some prepared frosting but it smelled all chemically and tasted gross. So I made some real frosting with cream cheese, powdered sugar and vanilla. Of course the recipe I looked at didn't make enough so I had to make more. But it turned out yummy and I didn't do too bad a job of frosting it.
I enlisted Julia and Karyna to help finish decorating Casey's birthday table. It took a lot of directing and coaxing them, but we got it done. We put up banners and streamers and hung some balloons. I arranged his cake, cards and gifts. He had a pretty good haul!!
Casey had a good day at school. He stayed after and went to the community book discussion as part of his Read, Read, Read class from last semester. Apparently there were two other books as part of the discussion and no one had read Francona, phooey. Well, Casey had something prepared to say about it and Nancy H had read it as well, so she said a few things and that was it. Gene picked them up at 3:15.
Gene had to go back out to get Casey's birthday balloons. Never too old for balloons!
Colin wasn't the most cooperative kid. He was J E A L O U S! Every time someone called for Casey he would yell/vocalize very loudly.
We opened some gifts and cards but he still had lots left. He really seemed to like the clothes that we got him from American Eagle--he is definitely growing up! Colin made awful faces when we asked him if he'd like clothes for his birthday.
We did the traditional singing of Happy Birthday and the boys 'blew out' the candles with the candle snuffer. We had cake and ice-cream and then it was pretty much time for bed.
Happy 17th Birthday Big K, Plumpie, The Bigster, our oldest!
I think that between my Facebook page and Casey's we must have over a hundred birthday wishes for Casey! Thank you, Cashel Gardner for posting birthday wishes on SMA It Forward because he got tons of birthday wishes from Cashel's friends. Very heartwarming to think that someone will take a bit of time out of their day to think of my boy and wish him a happy day!
Made Casey a Red Velvet cake. I was going to use some prepared frosting but it smelled all chemically and tasted gross. So I made some real frosting with cream cheese, powdered sugar and vanilla. Of course the recipe I looked at didn't make enough so I had to make more. But it turned out yummy and I didn't do too bad a job of frosting it.
I enlisted Julia and Karyna to help finish decorating Casey's birthday table. It took a lot of directing and coaxing them, but we got it done. We put up banners and streamers and hung some balloons. I arranged his cake, cards and gifts. He had a pretty good haul!!
Casey had a good day at school. He stayed after and went to the community book discussion as part of his Read, Read, Read class from last semester. Apparently there were two other books as part of the discussion and no one had read Francona, phooey. Well, Casey had something prepared to say about it and Nancy H had read it as well, so she said a few things and that was it. Gene picked them up at 3:15.
Gene had to go back out to get Casey's birthday balloons. Never too old for balloons!
Colin wasn't the most cooperative kid. He was J E A L O U S! Every time someone called for Casey he would yell/vocalize very loudly.
We opened some gifts and cards but he still had lots left. He really seemed to like the clothes that we got him from American Eagle--he is definitely growing up! Colin made awful faces when we asked him if he'd like clothes for his birthday.
We did the traditional singing of Happy Birthday and the boys 'blew out' the candles with the candle snuffer. We had cake and ice-cream and then it was pretty much time for bed.
Happy 17th Birthday Big K, Plumpie, The Bigster, our oldest!
Wednesday, January 22, 2014
Lots of people this afternoon
Big thing of the day was that from 3:00 to 6:00 it was crazy here with lots of people.
First was Paul from Apria (RT) here to do vent checks on the boys' Trilogys and to check serial numbers of equipment. I kind of think that somehow we are losing out on some equipment that was probably 'patient purchased' as we had rented it to own, but then Apria swapped it out and we never got to keep it. For instance, in the paperwork Paul had it said we had purchase 3 suction machines over the years and we only have ONE that they told us was purchased. There are pros and cons of purchasing equipment anyway, but still. We do own all of our old blue cough assists, so that's a good thing. We're only renting the 'new' style cough assist under Colin's name. With the new insurance, I'm going to get one for Casey. I hope they don't buck it but we'll see.
While Paul was here a tech from The Medical Store came to fix Casey's power chair. The chair worked with the attendant control but he couldn't drive it. Turns out it was the controller thingy that went bad. It's partially fixed--Casey can drive it, but it still flashes the error until they get us a new cable. Sigh.
And, while they were both still here, Deb from Biomedics came. She was here for at least two hours. She looked at Colin's AFOs, his night time leg braces, and his belly brace. She added a strap that will help keep Colin's foot in place in his AFOs and added a padding here and there. She glued the inside foam to Colin's night time braces so they be easier to put on. She declared that Colin has grown quite a bit since he got his belly brace (TLSO) in March/April of 2013. His torso had grown about 3 inches!! So, she'll be putting in a pre-authorization for that. We MAY try a two piece clam shell instead of the one piece. I'm collecting some info and pics to show her of how some other families have had them made. She's fine with it although she says it is bulkier on the sides so I'm still looking at options.
Deb looked at Casey's AFOs and stretched them out and we used some soup cans to keep them stretched while they cooled. She flared out a couple of spots on Casey's night time braces. She reshaped Casey's left hand splint to make it fit better and for his thumb to stay better in place. So those were all good things to get done. She is a great orthotist!
First was Paul from Apria (RT) here to do vent checks on the boys' Trilogys and to check serial numbers of equipment. I kind of think that somehow we are losing out on some equipment that was probably 'patient purchased' as we had rented it to own, but then Apria swapped it out and we never got to keep it. For instance, in the paperwork Paul had it said we had purchase 3 suction machines over the years and we only have ONE that they told us was purchased. There are pros and cons of purchasing equipment anyway, but still. We do own all of our old blue cough assists, so that's a good thing. We're only renting the 'new' style cough assist under Colin's name. With the new insurance, I'm going to get one for Casey. I hope they don't buck it but we'll see.
While Paul was here a tech from The Medical Store came to fix Casey's power chair. The chair worked with the attendant control but he couldn't drive it. Turns out it was the controller thingy that went bad. It's partially fixed--Casey can drive it, but it still flashes the error until they get us a new cable. Sigh.
And, while they were both still here, Deb from Biomedics came. She was here for at least two hours. She looked at Colin's AFOs, his night time leg braces, and his belly brace. She added a strap that will help keep Colin's foot in place in his AFOs and added a padding here and there. She glued the inside foam to Colin's night time braces so they be easier to put on. She declared that Colin has grown quite a bit since he got his belly brace (TLSO) in March/April of 2013. His torso had grown about 3 inches!! So, she'll be putting in a pre-authorization for that. We MAY try a two piece clam shell instead of the one piece. I'm collecting some info and pics to show her of how some other families have had them made. She's fine with it although she says it is bulkier on the sides so I'm still looking at options.
Deb looked at Casey's AFOs and stretched them out and we used some soup cans to keep them stretched while they cooled. She flared out a couple of spots on Casey's night time braces. She reshaped Casey's left hand splint to make it fit better and for his thumb to stay better in place. So those were all good things to get done. She is a great orthotist!
Tuesday, January 21, 2014
Just a Tuesday
The most exciting thing about today was that Colin and I were alone in the house for half an hour today! That hardly ever happens. Usually Gene is working from home or his teacher is here or Aunt Chris or Aunt Julia. But, Gene went into the office today and Priscilla had her lunch break so Colin and I were alone from 10:30 to 11:00!! We didn't do anything exciting. I found a Wii U Lego Marvel walkthrough on YouTube and he was enthralled so that's what we did--watch a walkthrough.
The other exciting thing was that we got Colin on the ball again. He definitely had high heart rate and sweaty hands but he didn't seem as stressed about it emotionally. He watched his ipad while we did it and he did well. He wasn't too comfy sitting up because his belly brace slides a bit and pokes at him. And, he's not crazy about his feet being flat on the ground (he doesn't mind having his feet flat when he's in the stander--weird). He really liked when Christina leaned him backwards and rocked him side to side on the ball.
Casey had a good day at school until last period of the day--English. He is not lasting very long, at all,in the class. He gets very loud and has to leave. I just don't get it. None of us do. He was very happy and silly this afternoon/evening.
Gene put together a stew this morning and I stirred it and spruced it up a bit with some cooking sherry, beef bouillon and lima beans. I thought it turned out pretty well.
Our order has started coming in from Apria from the new insurance. Sure enough we got a case (12 bottles) each of sterile water plus 6 bottles each in their box of supplies. Weirdos. We got 20 of the red rubber catheters that I wanted for Colin. We usually only use 2 a week (we wash and rotate and change the baggies) but somehow I was down to ONE. Phew. Got one more of the new size trach we need for Casey. Will have to see how many they will allow us. Probably will have to have Dr. Lahiri write a LMN. We need to have several extras for emergencies and I like to have one on each of his chairs, one on his vent stand and one in the van.
It was frigid today and doesn't seem like it going to get any better for the next week. Wish I could keep Casey home when it's this cold but then he'd never be in school!
Gene bought some bottle of root beer and mentioned root beer floats yesterday. I just had to have one tonight. It's never too cold for me to have ice-cream!!
The other exciting thing was that we got Colin on the ball again. He definitely had high heart rate and sweaty hands but he didn't seem as stressed about it emotionally. He watched his ipad while we did it and he did well. He wasn't too comfy sitting up because his belly brace slides a bit and pokes at him. And, he's not crazy about his feet being flat on the ground (he doesn't mind having his feet flat when he's in the stander--weird). He really liked when Christina leaned him backwards and rocked him side to side on the ball.
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| PT and Collie |
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| this is so she could see how his legs looked |
Casey had a good day at school until last period of the day--English. He is not lasting very long, at all,in the class. He gets very loud and has to leave. I just don't get it. None of us do. He was very happy and silly this afternoon/evening.
Gene put together a stew this morning and I stirred it and spruced it up a bit with some cooking sherry, beef bouillon and lima beans. I thought it turned out pretty well.
Our order has started coming in from Apria from the new insurance. Sure enough we got a case (12 bottles) each of sterile water plus 6 bottles each in their box of supplies. Weirdos. We got 20 of the red rubber catheters that I wanted for Colin. We usually only use 2 a week (we wash and rotate and change the baggies) but somehow I was down to ONE. Phew. Got one more of the new size trach we need for Casey. Will have to see how many they will allow us. Probably will have to have Dr. Lahiri write a LMN. We need to have several extras for emergencies and I like to have one on each of his chairs, one on his vent stand and one in the van.
It was frigid today and doesn't seem like it going to get any better for the next week. Wish I could keep Casey home when it's this cold but then he'd never be in school!
Gene bought some bottle of root beer and mentioned root beer floats yesterday. I just had to have one tonight. It's never too cold for me to have ice-cream!!
Monday, January 20, 2014
Bronch and upsized trach for Casey
I'm going to cheat a little here and use my Facebook posts to get this entry going and then I'll fill it out a bit :)
5 AM Going to get Casey up in a minute. We have to leave at 6 AM for his bronchoscopy. I'll update when I can.
7:35 AM They just took Casey back. Got IV in on first try. Casey is nervous but stoic.
8:15 ish He's done! Dr. Lahiri said It all looked great. No infection or plugs or granulation. Oh, he just wheeled by eyes open.
9 AM Settled in PACU. Started food. Watching the History channel. Dr Lahiri will be back soon to upsize trach. Have to stay at least one hour.
11 AM Larger trach placed. He says it feels weird but he sounds good. Julie started doing the change but couldn't get it passed the stoma so Dr Lahiri took over and got it in. Now, out with the IV and we're out of here. Heard the roads were bad so we'll take it slow.
Noon We're home. Van did great in the snow and Julie was a good driver Casey thinks he's big stuff because he has a "big throat" now, or a grown up throat, ha ha. Thanks for all the positive thoughts/prayers/mojo sent our way today.
1 PM I'm off to a nap. (didn't sleep well--too anxious about not getting up in time!). Julie has both boys in the wish room and they're all snuggled in. Casey is a little out of sorts but I think he's just tired and doesn't want to share Julie. Julie is going to wii with them. Gene is on a work call and is back up.
All in all, it was a successful day. It's always nerve wracking to go to the hospital for ANYthing but to have a procedure done that you haven't done before is really nerve wracking. AND, I hate any time that one of my kids has to have anesthesia. Today they used Versed and Propofol, which Casey has had before. It's not considered to be a heavy anesthesia--kind of middlish one. They kind of explained it to me that way. Speaking of, Julie took a picture of me and the Resident Anesthesiologist.
Dr. Lahiri is so laid back and I'm very thankful for him. I had told him about my concerns as to placing the new trach while he was under anesthesia. The anesthesia docs didn't get it but when I talked with Dr. Lahiri he was on my side and understood. Julie and I are the ones who understands his facial expressions and know how he likes to be positioned and that kind of stuff. Turns out I'll bet they were glad they didn't do it because as soon as the bronch was done they were wanting me and Julie with him because they had no clue about the Trilogy vent. I had thought that one of the RTs that knows the Trilogy was supposed to be there but something must have come up because I never saw her.
It was so funny to see Casey wheeled by the room where we had been waiting. He was all wide eyed and wondering what the heck was going on. They got Julie and I down into the recovery room pretty quickly. We had some very kind nurses in there. They pretty much let us do whatever we needed and tried hard to help us out with anything we needed. I think they were a little surprised as to how efficient we were with everything and didn't need much from them. They kept wanting to use their suction or their syringes, whatever, but we always had what we needed. (does that make sense??)
Gene and Colin did fine at home. He did his water, meds, neb, cough and got him dressed.
Julie was going to play wii in the wish room so they could be out there together and Casey could rest, but we think we'd have had to re-sync the wii u so I grabbed the seriously old Play Station that Lauren gave us and they played that. Everyone was happy.
Julie also squeezed in a call to DynaVox. FINALLY got it figured out for Casey to be able to send words to the Internet. She got Ian, and he has always been the best tech. They had to take off the keyboard Casey used to use to send info and he set it up a different way, but it works! Now that keyboard won't be there all the time taking up space when he's using the Internet. It will pop up for him when he hits the 'Enter Text Here' box. Anyway, I hope this works. Casey was very happy to be Google mapping again. He wanted the name of the town that the Rug Rats lived in. They were playing an old Rug Rats game so that was what was on his mind. Gene Googled it and came up with some town in California that really exists so he was happy.
Comcast guy came. Turns out it was a guy who had been here before and was awesome! He fixed us right up and we chatted about some things they have going on in Beta and some upcoming technologies. He also told me that I can get a really long HDMI cable so I will be able to sit on the couch and play computer games with the boys from my laptop and project on the TV. Before I was having to sit on a stadium chair that hurt my back and butt and be tethered with a 3 foot cable. And,that was an RGB cable but this laptop has HDMI so I'll probably get one of those.
What else....Oh, I had just been thinking that we hadn't had a major formula malfunction in a while and...from my post on Facebook...
I love how Casey uses his DynaVox to truly communicate something--not just his GoogleMaps or normal conversations that we have often (Like, Football, ipad, mom, please). This time he said, "Back cold." I had just given the boys their 'hot packs' (rice socks in the microwave). He said "Back Cold". Normally he doesn't like anything warm on his back or to have it rubbed or anything. I thought maybe he was feeling off from his procedure today. So I went to move his hot pack from his feet to his back and, voila, his med port on his g-tube extension had popped and formula was running down his back!!! I'm surprised he didn't say "Back Wet" but it still got his point across!
Got the boys into bed early. Colin slept in late so I wasn't sure if he'd go for it but it sounds quiet out there now. I can't believe there is school tomorrow. We're supposed to get the frigid cold weather back. It's down to 4 degrees already. Poo.
5 AM Going to get Casey up in a minute. We have to leave at 6 AM for his bronchoscopy. I'll update when I can.
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| Here's nurse Julie Marshall and Casey rockin' pre-surg |
7:35 AM They just took Casey back. Got IV in on first try. Casey is nervous but stoic.
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| there he goes! |
8:15 ish He's done! Dr. Lahiri said It all looked great. No infection or plugs or granulation. Oh, he just wheeled by eyes open.
9 AM Settled in PACU. Started food. Watching the History channel. Dr Lahiri will be back soon to upsize trach. Have to stay at least one hour.
 |
| still a little groggy |
11 AM Larger trach placed. He says it feels weird but he sounds good. Julie started doing the change but couldn't get it passed the stoma so Dr Lahiri took over and got it in. Now, out with the IV and we're out of here. Heard the roads were bad so we'll take it slow.
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| chatting in recovery |
Noon We're home. Van did great in the snow and Julie was a good driver Casey thinks he's big stuff because he has a "big throat" now, or a grown up throat, ha ha. Thanks for all the positive thoughts/prayers/mojo sent our way today.
1 PM I'm off to a nap. (didn't sleep well--too anxious about not getting up in time!). Julie has both boys in the wish room and they're all snuggled in. Casey is a little out of sorts but I think he's just tired and doesn't want to share Julie. Julie is going to wii with them. Gene is on a work call and is back up.
All in all, it was a successful day. It's always nerve wracking to go to the hospital for ANYthing but to have a procedure done that you haven't done before is really nerve wracking. AND, I hate any time that one of my kids has to have anesthesia. Today they used Versed and Propofol, which Casey has had before. It's not considered to be a heavy anesthesia--kind of middlish one. They kind of explained it to me that way. Speaking of, Julie took a picture of me and the Resident Anesthesiologist.
 |
| chatting about sedation |
Dr. Lahiri is so laid back and I'm very thankful for him. I had told him about my concerns as to placing the new trach while he was under anesthesia. The anesthesia docs didn't get it but when I talked with Dr. Lahiri he was on my side and understood. Julie and I are the ones who understands his facial expressions and know how he likes to be positioned and that kind of stuff. Turns out I'll bet they were glad they didn't do it because as soon as the bronch was done they were wanting me and Julie with him because they had no clue about the Trilogy vent. I had thought that one of the RTs that knows the Trilogy was supposed to be there but something must have come up because I never saw her.
It was so funny to see Casey wheeled by the room where we had been waiting. He was all wide eyed and wondering what the heck was going on. They got Julie and I down into the recovery room pretty quickly. We had some very kind nurses in there. They pretty much let us do whatever we needed and tried hard to help us out with anything we needed. I think they were a little surprised as to how efficient we were with everything and didn't need much from them. They kept wanting to use their suction or their syringes, whatever, but we always had what we needed. (does that make sense??)
Gene and Colin did fine at home. He did his water, meds, neb, cough and got him dressed.
Julie was going to play wii in the wish room so they could be out there together and Casey could rest, but we think we'd have had to re-sync the wii u so I grabbed the seriously old Play Station that Lauren gave us and they played that. Everyone was happy.
Julie also squeezed in a call to DynaVox. FINALLY got it figured out for Casey to be able to send words to the Internet. She got Ian, and he has always been the best tech. They had to take off the keyboard Casey used to use to send info and he set it up a different way, but it works! Now that keyboard won't be there all the time taking up space when he's using the Internet. It will pop up for him when he hits the 'Enter Text Here' box. Anyway, I hope this works. Casey was very happy to be Google mapping again. He wanted the name of the town that the Rug Rats lived in. They were playing an old Rug Rats game so that was what was on his mind. Gene Googled it and came up with some town in California that really exists so he was happy.
Comcast guy came. Turns out it was a guy who had been here before and was awesome! He fixed us right up and we chatted about some things they have going on in Beta and some upcoming technologies. He also told me that I can get a really long HDMI cable so I will be able to sit on the couch and play computer games with the boys from my laptop and project on the TV. Before I was having to sit on a stadium chair that hurt my back and butt and be tethered with a 3 foot cable. And,that was an RGB cable but this laptop has HDMI so I'll probably get one of those.
What else....Oh, I had just been thinking that we hadn't had a major formula malfunction in a while and...from my post on Facebook...
I love how Casey uses his DynaVox to truly communicate something--not just his GoogleMaps or normal conversations that we have often (Like, Football, ipad, mom, please). This time he said, "Back cold." I had just given the boys their 'hot packs' (rice socks in the microwave). He said "Back Cold". Normally he doesn't like anything warm on his back or to have it rubbed or anything. I thought maybe he was feeling off from his procedure today. So I went to move his hot pack from his feet to his back and, voila, his med port on his g-tube extension had popped and formula was running down his back!!! I'm surprised he didn't say "Back Wet" but it still got his point across!
Got the boys into bed early. Colin slept in late so I wasn't sure if he'd go for it but it sounds quiet out there now. I can't believe there is school tomorrow. We're supposed to get the frigid cold weather back. It's down to 4 degrees already. Poo.
Sunday, January 19, 2014
Once again I had hoped that the boys would sleep in but no go. We're going to have to try to get them to sleep early tonight because Casey has to get up 'before the chickens' as Nancy H would say.
Colin got his shower. Got him in his game day clothes. Isn't he handsome/cute/etc?
Casey got his gear on, too.
I have two handsome dudes!
And, speaking of handsome, we gave Jaxon a bath earlier. Funny, for a dog that is supposed to love water, he HATES taking a shower. But he smells so much better and his bedding is all fresh and clean.
We've been having problems with our Comcast TV and DVR. It's been shuttering and stopping both during regular watching and during the DVR. Well, we're trying to watch the big game and can hardly stand it because the quality of the picture is so poor. So, Gene decided to reset the modem. I guess it wasn't the best idea because now we have nothing. It would go in a loop of reloading and then just stop. Sigh. Good thing the Patriots are losing--well, you know what I mean. So Gene got on the phone with Comcast and they tried to trouble shoot but it looks like we need a new cable box/modem/hard drive thingy. They'll be here between 1 and 3 PM tomorrow. But, Gene saved the day and hooked up the box from our bedroom so we could see the last of the game. Oh well, Patriot's will get 'em next year!
AC came over for a little bit but wanted to head home before it got too dark. It snowed about 3 inches last night and started up again this afternoon and she is not a happy driver in the snow.
Tomorrow is Casey's bronchoscopy. Nurse Julie is getting here at 5:30 and we have to leave here at 6AM. Check in, IV and all that and then procedure at 7:30. Please send prayers, good thoughts, good vibes our way.
Colin got his shower. Got him in his game day clothes. Isn't he handsome/cute/etc?
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| Colin and his Tom Brady bobblehead |
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| Casey with his gear on and Daddy's football from when he was little |
And, speaking of handsome, we gave Jaxon a bath earlier. Funny, for a dog that is supposed to love water, he HATES taking a shower. But he smells so much better and his bedding is all fresh and clean.
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| Fresh and clean Jaxon |
We've been having problems with our Comcast TV and DVR. It's been shuttering and stopping both during regular watching and during the DVR. Well, we're trying to watch the big game and can hardly stand it because the quality of the picture is so poor. So, Gene decided to reset the modem. I guess it wasn't the best idea because now we have nothing. It would go in a loop of reloading and then just stop. Sigh. Good thing the Patriots are losing--well, you know what I mean. So Gene got on the phone with Comcast and they tried to trouble shoot but it looks like we need a new cable box/modem/hard drive thingy. They'll be here between 1 and 3 PM tomorrow. But, Gene saved the day and hooked up the box from our bedroom so we could see the last of the game. Oh well, Patriot's will get 'em next year!
AC came over for a little bit but wanted to head home before it got too dark. It snowed about 3 inches last night and started up again this afternoon and she is not a happy driver in the snow.
Tomorrow is Casey's bronchoscopy. Nurse Julie is getting here at 5:30 and we have to leave here at 6AM. Check in, IV and all that and then procedure at 7:30. Please send prayers, good thoughts, good vibes our way.
Saturday, January 18, 2014
Our Van turns 1!! (Well, it's an '07 but we've had it for a year)
Shoot, ran out of water for the boy' humidity chambers. Gene was going to go out last night but then we got distracted or something. I can't remember the last time this happened...Anyway, both boys have thick secretions this morning so I've given them extra water in their bellies. And then, oopsie, I forgot their 9:30 feedings so they were about a half an hour late.
Something woke them up earlier than normal for a Saturday. They both were awake around 8:30 when they usually sleep in until about 11:00. Casey wanted football on his ipad right away and Colin wanted Jurassic Park III which Karyna brought him to borrow. I don't think he's seen the first two so we'll see if they're on Netflix.
Gene went out and got the distilled water we needed and used one of the coupons from the discount book Julie let us borrow. He went to Madeleine's Bakery, which we've only gone to once or twice event hough it's right in Milton. He had a coupon for 'buy 6 donuts and get 6 free' which is a great deal. He paid $5 for 12 donuts and they're really, really good. Don't judge, but I ate two! I had a coffee roll which was better than DD and a bit bigger, too. Then I had a jelly doughnut which weighed about a quarter of a pound! Delicious and way better than DD.
Jaxon is being a butt-head. Gene let him out back to do his business and he won't come in. We don't usually let him do this because he plays that stupid 'you can't come near me and I'm not coming in' game. We've done it some this winter because it's been so cold and he comes right back because he wants to come in where it's warm. Today is sunny and warmer than it's been so he's being a jerk.
Ordered my SMA it Forward tee shirt today. Cashel, who has SMA like Casey and Colin, designed the shirts himself. The money made by selling the shirts will go to helping the family purchase an accessible van. Cashel has a sister, Allie, who has SMA as well. And, whenever you wear the shirt you can be spreading awareness for SMA, so it's a win, win! See the link below.
SMA it Forward tee shirt link
Link to Cashel and Allie's Go Fund Me page
Casey had his shower. Watched some football in his old room.
Colin got washed up and dressed and watched Happy Feet. Hadn't see that one in a while.
Nancy H played some Poptropica with Colin while Casey surfed TV channels and watched more football.
I did some laundry and cleaned the upstairs bathroom, oh joy.
Gene and his dad went to their annual game supper. No moose meatballs but they had some bear and rabbit and turkey, and veggies.
That's about it for the day. Oh, Gene got a phone call from Apria about the sterile water we order. Apparently this new insurance isn't as generous as MVP was. They said they will provide 18 and we ordered 48--now, I'm hoping they mean 18 for each boy as we were getting 24 for each. We'll see. We still always have to buy a couple of gallons each month. Winter months it's so dry here that they go through a lot.
Something woke them up earlier than normal for a Saturday. They both were awake around 8:30 when they usually sleep in until about 11:00. Casey wanted football on his ipad right away and Colin wanted Jurassic Park III which Karyna brought him to borrow. I don't think he's seen the first two so we'll see if they're on Netflix.
Gene went out and got the distilled water we needed and used one of the coupons from the discount book Julie let us borrow. He went to Madeleine's Bakery, which we've only gone to once or twice event hough it's right in Milton. He had a coupon for 'buy 6 donuts and get 6 free' which is a great deal. He paid $5 for 12 donuts and they're really, really good. Don't judge, but I ate two! I had a coffee roll which was better than DD and a bit bigger, too. Then I had a jelly doughnut which weighed about a quarter of a pound! Delicious and way better than DD.
Jaxon is being a butt-head. Gene let him out back to do his business and he won't come in. We don't usually let him do this because he plays that stupid 'you can't come near me and I'm not coming in' game. We've done it some this winter because it's been so cold and he comes right back because he wants to come in where it's warm. Today is sunny and warmer than it's been so he's being a jerk.
Ordered my SMA it Forward tee shirt today. Cashel, who has SMA like Casey and Colin, designed the shirts himself. The money made by selling the shirts will go to helping the family purchase an accessible van. Cashel has a sister, Allie, who has SMA as well. And, whenever you wear the shirt you can be spreading awareness for SMA, so it's a win, win! See the link below.
SMA it Forward tee shirt link
Link to Cashel and Allie's Go Fund Me page
Casey had his shower. Watched some football in his old room.
Colin got washed up and dressed and watched Happy Feet. Hadn't see that one in a while.
Nancy H played some Poptropica with Colin while Casey surfed TV channels and watched more football.
I did some laundry and cleaned the upstairs bathroom, oh joy.
Gene and his dad went to their annual game supper. No moose meatballs but they had some bear and rabbit and turkey, and veggies.
That's about it for the day. Oh, Gene got a phone call from Apria about the sterile water we order. Apparently this new insurance isn't as generous as MVP was. They said they will provide 18 and we ordered 48--now, I'm hoping they mean 18 for each boy as we were getting 24 for each. We'll see. We still always have to buy a couple of gallons each month. Winter months it's so dry here that they go through a lot.
Friday, January 17, 2014
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| 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!
Thursday, January 16, 2014
Sigh, doctors
Most interesting thing about today was dealing with the darn old doctors and Casey's feeding schedule the night before his surgery. First, Gene talked with someone about some general questions and then he deferred to me. According to whoever this person was, the anesthesia doc, Dr. Lahiri and our pediatrician thought that Casey shouldn't have any formula after midnight which would mean 8 hours of fasting for him. That doesn't fly for me AND I had talked to Dr.Lahiri before and he was on my side saying that Casey was a low risk for aspiration, etc. A bunch of phone calls later, including our pediatrician, I kind of agreed that he'd get his formula until 12:30 and then at 4:00-5:30 I'd run Pedialyte. The Pedialyte will give him hydration, electrolytes and sugars but he'd be without his aminos/protein which SMA kids need to thrive. I know it's only one feeding but he's never gone so long without before. We'll see what happens next. I still may get a chance to talk with Dr. Lahiri again. We had talked about emptying his stomach if there was anything it in so I don't see why anesthesia is being so strict. The procedure should only be 10-15 minutes long. Oh, and they agreed that he had a nissen fundiplication but it was placed at 9 months of age so they wouldn't trust it. Sigh. I get the risk of aspiration but I think they are going overboard.
AND, then our pediatrician mentioned that they might do the trach change while he's in the procedure room. So they would take out his AIRWAY when he was under anesthesia??? I think NOT!! I plan on that being a group effort that includes Nurse Julie and myself.
That's the gist of it without many of the details...I can't wait for it to be over with!!!! Oh, and they did say that if all goes well he'd be able to get his feeds right after. Casey is the first case in the AM--at 7:30 so that's a good thing. Is it Monday afternoon yet??????????
Other interesting thing that happened today was that Mrs, Short (Casey's SLP and case manager) called and said she got Casey's note about wanting to stay in the Read, Read, Read class. They talked about it for a while and then she told him he could go to it today and we'd talk about it. She wanted to honor his feelings since he doesn't always get a lot of say in things. I'm fine with it. I was hoping he'd enjoy the creative writing, but there is next year so we'll keep it in mind.
Read some of Emma on my 'nap' time today. Still not loving it but am keeping an open mind and remembering that it was written by a woman, and written over a hundred years ago.
Casey had Randi today (art therapist). He had he going on about the Fresh Prince of Bel Air and she sang him the theme song (you can tell by this that she is young :) ) Then he wanted to come up with alternative names for himself. Odd, I know, but he likes getting people going and making them guess things.
AC came and hung out with Casey for awhile and then played some Lego with Colin. Of course, I had to help and I made some good progress, hee hee.
Watched Idol from yesterday. It was annoying because there must have been something wrong with the air waves because the show came out all jittery and kept stopping. Then Gene said, maybe it's On Demand. Bingo! But we had to watch the darn commercials.
Pre-registration called and we got that done. My poor cake and ice-cream got a little soggy. Why do people always call whenever I touch food?? Maybe I touch food a lot?????
AND, then our pediatrician mentioned that they might do the trach change while he's in the procedure room. So they would take out his AIRWAY when he was under anesthesia??? I think NOT!! I plan on that being a group effort that includes Nurse Julie and myself.
That's the gist of it without many of the details...I can't wait for it to be over with!!!! Oh, and they did say that if all goes well he'd be able to get his feeds right after. Casey is the first case in the AM--at 7:30 so that's a good thing. Is it Monday afternoon yet??????????
Other interesting thing that happened today was that Mrs, Short (Casey's SLP and case manager) called and said she got Casey's note about wanting to stay in the Read, Read, Read class. They talked about it for a while and then she told him he could go to it today and we'd talk about it. She wanted to honor his feelings since he doesn't always get a lot of say in things. I'm fine with it. I was hoping he'd enjoy the creative writing, but there is next year so we'll keep it in mind.
Read some of Emma on my 'nap' time today. Still not loving it but am keeping an open mind and remembering that it was written by a woman, and written over a hundred years ago.
Casey had Randi today (art therapist). He had he going on about the Fresh Prince of Bel Air and she sang him the theme song (you can tell by this that she is young :) ) Then he wanted to come up with alternative names for himself. Odd, I know, but he likes getting people going and making them guess things.
AC came and hung out with Casey for awhile and then played some Lego with Colin. Of course, I had to help and I made some good progress, hee hee.
Watched Idol from yesterday. It was annoying because there must have been something wrong with the air waves because the show came out all jittery and kept stopping. Then Gene said, maybe it's On Demand. Bingo! But we had to watch the darn commercials.
Pre-registration called and we got that done. My poor cake and ice-cream got a little soggy. Why do people always call whenever I touch food?? Maybe I touch food a lot?????
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."
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