I'll preface this by saying Casey is okay :)
Nurse Julie and I took the boys to the U Mall today for hair cuts and to pick up the Disney Infinity wii we had on reserve that finally came out. We had a good time tooling around. Casey drove his power chair some. I love letting him go way ahead of us and watch him go. Today he was interested in the nail salon :)
The hair place was busy so we shopped some more. Colin was very excited to get the Infinity wii that we've been hearing about for months! I gotta give the guys in GameStop some kudos. Every single time we've been in there they have been so cheerful, helpful and knowledgeable. I mean, these guys are true geeky gamers and I don't think there's a game they've never played!
Hit McDonald's in the food court for a 'snack' and a sundae. A woman came over to us and asked us if the boys had SMA...wild, huh? Turns out it is our little buddy Asher's paternal grandma. We've met his maternal grandma Patti. She was very nice and we chatted for a bit. We also chatted with Mel (Casey's old para) for a while as she was there shopping with her Collin.
Finally it was time to hit the hair cutting place. Colin went first. It went okay although she had a hard time using the clippers because of the handles of his chair. Colin was, "Ahhhh"ing as he loves to get his hair cut so he kept us entertained. Then it was Casey's turn. He was in his power chair and the head rest doesn't come off it it easily like his manual chair so I was holding his head and moving it where the stylist needed me to. I got kind of tired after a while so I asked Julie to switch places with me (she was hanging with Colin), She took his head out of my hands and said something like "he doesn't look right." And, OMG, he was dusky, and the most awful color. After that things got kind of crazy. Of course we had the cough assist in the van--almost brought it in but decided not to. MISTAKE! He was still conscious and would blink but couldn't make noise. NOT good. We got the ambu bag out (it give him direct, big breaths via his trach) and suctioned his mouth. Got some out. Suctioned his trach. Not much. Still not making noise. Julie did what she has always said she'd do if she had to--She BREATHED BIG BREATHS RIGHT INTO HIS TRACH! And, he started making noises! That's when we knew he'd be okay. Somewhere in there 2 stylist and 1 customer were there not knowing what to do. One of them asked if we should call 911 and I finally said yes. For some reason she went out in the mall to summon someone??? I ended up talking with someone on the phone and said we were okay.
The stylist and customer were so kind but pretty shattered. I told the customer (an older woman) that I hoped her hair cut would be straight because the stylist's hands were shaking so badly! She laughed and said she was just getting foils and that her coloring would probably be the best at the wedding she was going to! I took the opportunity to spread SMA awareness and gave the 3 people our cards with SMA info on them and I had two cards left from The Getty Owl Foundation that I gave them, too.
Casey looked very pale for quite a while. I'm hoping some of it was the lighting.
But, those of you reading this that have SMA kids that have had such an episode you'll know how quickly our kids recover and act like nothing happened. Thank goodness they are so resilient and forgiving!
Although, Casey did have some things to say on his DynaVox on the way home and after we got home. He was talking about police man, hospital, etc. (although this isn't totally unusual for him) Later on he said, "because I was sad. I couldn't breath." (breathe). My poor heart was so sad hearing this. BUT I'm glad he's able to express this much because I know some kids can't.
He is fully recovered now. Had a shower and has a fresh trach :) We were kidding him saying that Julie blew chunks of her McCafe and the caffeine revived him, ha ha.
Me, I needed a nap after that. Phew!
On a lighter note...the boys and I started the new Disney Infinity wii game. I'm really kind of not sure if I'll like it. I wasn't even sure what to do. I was hoping it would be a simple game and they'd guide you like Skylanders does. I like having objectives and I think this game might be more of a free play but we'll see. The boys were entertained while I tried to learn how to build, drive and combat.
Time for bed soon. Tomorrow is a quiet day. Casey has his art therapy and that's it.
Sorry no pictures!
Tuesday, August 20, 2013
Tuesday, August 13, 2013
Active cycle, dentist and the lift doesn't stow....
Busy day today although I wasn't very motivated this morning. I felt like someone had slipped me decaf instead of my regular coffee.
After I got out of the shower this morning I yelled down to Gene inquiring what the temperature/weather was going to be today so I knew what to wear. Well, he replied, "It's Christina is here to try Casey with the Active Cycle kind of day today." Ooops, once again I forgot that PT was coming. And, I hadn't put together the contraption using pipe and elbow connectors that she had prepared. Big oooops. By the time I got downstairs, they had the contraption (pretty much a cube shaped contraption) was together and Julie had Hoyered him into the living room.
The Active Cycle is an exercise machine that is motorized and make the bicycling movement. Some kids with SMA have used them with success with their kids. Some people call it the 'Poor Man's MotoMed' which is a high end and very fancy version of a machine used in Rehab and hospitals. Our hope is that it will improve Casey's (and eventually Colin's) circulation and contractures in his legs. Casey sits a lot at school and even though he gets out of his chair to lay down and stretch midday, he still come home with cold, purplish legs :( And, we hope it will help stretch him out a bit and give him a consistent range of motion.
That said, it's a lot easier to say what we'd like it to do than to make it actually work for him. I've got some good ideas to try from other SMA families and I think we're on the right track.
Casey wasn't thrilled with the motion, but I'm sure he will get used to it.
After that, Casey showered, Colin watched a movie and then we packed up to go to the dentist. For some odd reason, the boys kind of like going to the dentist. I guess it's because their visits are usually pretty quick and easy. Both boys have had a tooth or two pulled (that were ready to come out) but other than that it's mostly just counting teeth, checking gums, etc.
Casey went first today. Dr. Bookwalter was pleased with his teeth and gums. Casey does have a crowding issue and excessive gum tissue but it's not hurting him at all and it would be a huge risk to pull teeth and/or excise his extra gums. So, his teeth are what they are and they are good :) Dr. Bookwalter scraped a bit of his front teeth and behind them and then polished them a bit. He is very pleased that he doesn't have a lot of build up of tartar or calcium as some kids do and he said he's at zero risk for tooth decay.
Casey likes joking around with Dr. B and we always have a laugh or two while we're there :)
Colin went next and he loved it! I really don't get it, but he does. Weird/scary thing--last time Colin had 3 baby teeth; this time he has NONE! I kind of remember that he lost ONE tooth inbetween the last time he was there and now, but definitely not THREE! Where did they go? It's always a scary thing to think about. Colin has virtually no swallow--but could one have gone his throat? We know of at least one SMA child that aspirated one into his lungs--a scary and not pretty situation. I've also known of a child that had a tooth sit on his epiglottis for months, and this happened not once, but twice! I guess we'll never know.
Dr. B used the scaler on Colin for the first time behind his front top teeth. He was pleased with his gums and teeth. He said his molars are pretty much hidden from the pressure his tongue is putting on them but he doesn't see it as a problem.
That was that! We were out of there with no need to come back until next summer!! For some reason, the boys are never given a toothbrush and prize anymore. I used to ask but now we just leave it as a mysterious thing and go to the dollar store. BUT the dollar store next to Timberlane is gone now so we decided to head to the one by the VNA. It's pretty new(ish) and I've never been there.
Of course it started to pour when we started driving. Torrential rains when we got there. Julie tried to encourage me to run in by myself but the boys really wanted to go so we went for it. I found the poncho in Casey's bag but didn't want to dig for Colin's so we put a chux on him and made a run for it.
Found a few things for school. The boys really don't need anything since they do most of their work on their DynaVox's but I got Casey some sports folders and a football composition book. Also got some Post-It notes since they use those a lot with him for spelling things and for words/phrases to add to his DynaVox. Colin got some dry erase markers, a new blue pencil case and a big glue stick :)
The rain had taped to a drizzle when we went out to the van. Got the boys in and went to stow the lift and NOTHING, nothing but a BEEP. We fiddled and fiddled. Tried re-deploying and bringing it up again, but no go. I called Gene but he had no answers. Julie figured out how to manually stow the van so we were finally good to head home. The school bus lift has issues frequently so she had an idea of what to do.
Got home and unloaded. Gene was able to get the lift to work properly after a time or two. What the heck??? Knowing Gene he won't want to bring it to anyone to get fixed/serviced and he'll probably try to work on it himself. Sigh. It had always rattled/banged some even when we first got the van back in January and I know they're supposed to be serviced regularly so that's probably part of the problem. We had a different brand of lift before and never had such an issue. So, time will tell what happens.
After I got out of the shower this morning I yelled down to Gene inquiring what the temperature/weather was going to be today so I knew what to wear. Well, he replied, "It's Christina is here to try Casey with the Active Cycle kind of day today." Ooops, once again I forgot that PT was coming. And, I hadn't put together the contraption using pipe and elbow connectors that she had prepared. Big oooops. By the time I got downstairs, they had the contraption (pretty much a cube shaped contraption) was together and Julie had Hoyered him into the living room.
The Active Cycle is an exercise machine that is motorized and make the bicycling movement. Some kids with SMA have used them with success with their kids. Some people call it the 'Poor Man's MotoMed' which is a high end and very fancy version of a machine used in Rehab and hospitals. Our hope is that it will improve Casey's (and eventually Colin's) circulation and contractures in his legs. Casey sits a lot at school and even though he gets out of his chair to lay down and stretch midday, he still come home with cold, purplish legs :( And, we hope it will help stretch him out a bit and give him a consistent range of motion.
That said, it's a lot easier to say what we'd like it to do than to make it actually work for him. I've got some good ideas to try from other SMA families and I think we're on the right track.
 |
| So you can see he's laying down and we're using the lift to hang some straps under his knees. |
 |
| We have his AFOs on and his feet strapped securely to the pedals. |
 | ||
| Our problem is that his hips are kind of UN-alighned, which is not a good thing but we're working on that. |
After that, Casey showered, Colin watched a movie and then we packed up to go to the dentist. For some odd reason, the boys kind of like going to the dentist. I guess it's because their visits are usually pretty quick and easy. Both boys have had a tooth or two pulled (that were ready to come out) but other than that it's mostly just counting teeth, checking gums, etc.
Casey went first today. Dr. Bookwalter was pleased with his teeth and gums. Casey does have a crowding issue and excessive gum tissue but it's not hurting him at all and it would be a huge risk to pull teeth and/or excise his extra gums. So, his teeth are what they are and they are good :) Dr. Bookwalter scraped a bit of his front teeth and behind them and then polished them a bit. He is very pleased that he doesn't have a lot of build up of tartar or calcium as some kids do and he said he's at zero risk for tooth decay.
Colin went next and he loved it! I really don't get it, but he does. Weird/scary thing--last time Colin had 3 baby teeth; this time he has NONE! I kind of remember that he lost ONE tooth inbetween the last time he was there and now, but definitely not THREE! Where did they go? It's always a scary thing to think about. Colin has virtually no swallow--but could one have gone his throat? We know of at least one SMA child that aspirated one into his lungs--a scary and not pretty situation. I've also known of a child that had a tooth sit on his epiglottis for months, and this happened not once, but twice! I guess we'll never know.
Dr. B used the scaler on Colin for the first time behind his front top teeth. He was pleased with his gums and teeth. He said his molars are pretty much hidden from the pressure his tongue is putting on them but he doesn't see it as a problem.
That was that! We were out of there with no need to come back until next summer!! For some reason, the boys are never given a toothbrush and prize anymore. I used to ask but now we just leave it as a mysterious thing and go to the dollar store. BUT the dollar store next to Timberlane is gone now so we decided to head to the one by the VNA. It's pretty new(ish) and I've never been there.
Of course it started to pour when we started driving. Torrential rains when we got there. Julie tried to encourage me to run in by myself but the boys really wanted to go so we went for it. I found the poncho in Casey's bag but didn't want to dig for Colin's so we put a chux on him and made a run for it.
Found a few things for school. The boys really don't need anything since they do most of their work on their DynaVox's but I got Casey some sports folders and a football composition book. Also got some Post-It notes since they use those a lot with him for spelling things and for words/phrases to add to his DynaVox. Colin got some dry erase markers, a new blue pencil case and a big glue stick :)
The rain had taped to a drizzle when we went out to the van. Got the boys in and went to stow the lift and NOTHING, nothing but a BEEP. We fiddled and fiddled. Tried re-deploying and bringing it up again, but no go. I called Gene but he had no answers. Julie figured out how to manually stow the van so we were finally good to head home. The school bus lift has issues frequently so she had an idea of what to do.
Got home and unloaded. Gene was able to get the lift to work properly after a time or two. What the heck??? Knowing Gene he won't want to bring it to anyone to get fixed/serviced and he'll probably try to work on it himself. Sigh. It had always rattled/banged some even when we first got the van back in January and I know they're supposed to be serviced regularly so that's probably part of the problem. We had a different brand of lift before and never had such an issue. So, time will tell what happens.
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