Yes! Well, at least for a year. We are truly in uncharted territories. Pamidronate infusions are being used more and more frequently with those with neuro muscular diseases to hopefully increase bone density thus keeping fractures at bay. That's the hope. But there really aren't a lot of studies out there on this, especially with kids like the boys with SMA. And, neither boy has had a lot of luck with their bone scans, because of their contractures which make it hard to position them for the scans. And, Casey has rods in his back which make that whole area unusable to scan. We can see some Anyway, my point is, there's no hard evidence that will tell us how much these infusions have helped and no studies out there that will show us that a second round will improve their density more. So for now, I'm putting it out of my mind, or at least in a dark corner :) and I won't take it out again until I hear that there is a new study out there that will give us a clue as to what direction to take. AND, hopefully, the boys will not experience a fracture.
Both boys had their IVs placed with one pick. Both in their left arms. Casey's on the wrist and Colin's in the antecubital. We actually were done with picks and blood draws early...and then the infusion bay wasn't ready for us so there was a wait time which did not make me happy. We could have been on our way home earlier than normal but it didn't happen.
Got settled into the bays. Colin stayed in his chair. Got Casey out onto the bed. He was on his side that makes it harder to position his arm/thumb to use his DynaVox but somehow Nancy got him set up. It still didn't help much. He was pretty noisy and kept everyone on their toes doing this and that for him. Jenny, the child life specialist spent a lot of time with him and a lot of time finding special movies for him. They both actually like this as it's kind of become their 'thing.' I know Casey will find himself missing her since we're done with our long days at the hospital.
Colin and Karyna passed the time happily watching Spider Man 3. Once in a while Colin would complain about his arm and we'd move him around but the IV would occlude easily so it was a dance of getting him comfy and not occluding the IV.
Everything seemed to go so slowly today. I went down to the coffee kiosk area and got some lunch and an iced tea. Nancy and I went down to the gift shop and I got a candy bar.
Finally, Dr. Zimacus came for his visit. They hadn't drawn for Casey's testosterone in the Comfort Zone so he had that done. He said he'd call with his results. Updated him a bit. Not much new. He did his "thing" where he checks his privates. Oh, joy. Seems like all is okay and he can still find his testicles. This seem to be progressing ever so slowly in the puberty department but we'll find out more when we get his testosterone levels back. We've definitely decided NOT to induce puberty with hormones.
He checked out Colin, too. Couldn't really feel his testicles but since he was in his chair it was awkward. I told him we had a plan to see Dr. Sartorelli (surgery) and asked about an ultrasound. He tried to get us in today but couldn't and we wouldn't have been able to stay anyway. We'll see if they can schedule us before our appointment in mid August.
That was that. Casey started to have a meltdown. He definitely has a harder time with the med than Colin. He seems to feel a bit cruddy and grumpy by the end. We got everything together and headed downstairs. Pulled out at about 3:35 and were home just before 4PM. Long day.
Gene had gone into work for a pizza party and then come home to work so he could be here to help us unload and unpack and get the boys settled. Nurse Lauren was working the evening for the first time since camp. She knew we had infusions so she brought me and iced coffee from DD :)
Settled into the living room and Lauren wii with the boys. Colin was pretty much himself. Casey was a little woozy :)
And that was our day. Headed into bed a little earlier than usual. Staci read a quick book and then they were cooked.
Wednesday, July 30, 2014
Thursday, July 24, 2014
Casey's DynaVox is kaput
The last 3 days we have spent trying to get Casey's DynaVox (communication device) back to baseline. Apparently he clicked on something on the Internet that he should not have--either an 'Ad On' or a link with a virus.
Gene was on with DynaVox once or twice and it really seemed like it would just need to be reflashed--meaning they'd wipe the device clean and re-put on the software. But that means sending it in. UGH.
Mel, at least I think it was her, thought that we could put Casey's pages on Colin's device so he wouldn't have to be without (Colin doesn't use his as often as Casey). She said she'd be able to figure this out for us. So, then went trying to figure out where his external hard drive was at school. Nancy H and I went to school and found our way in and to where Paula's desk was and found the drive. Whew! Got to see Mr. Wyndorf one of Casey's middle school teachers and one of his all time favorites.
The poor thing would open up multiple windows with weird stuff and then the screen would not allow us to close the windows so we'd have to use a keyboard/mouse to close it and restart, etc. Gene did all sorts of poking around and cleaning up and scans. At one point he did something with Norton Power Eraser and it removed the entire DynaVox software, yikes! He was able to undo what he did and we got the software back. Sometimes it would work okay. Last evening he was on his communication pages AND his Google maps and it worked for about an hour. Then out of no where it started opening up multiple weird windows and restarted itself. This was right after Gene went out to go to the store, of course. When he got back he managed to get the communication back. Then it was time for bed.
So, Casey had school with Ashley at 9:00. We thought at least the pages would work for him to do some school, but things were screwed up. Multiple restarts and some prodding from Gene it worked. But, Casey was pretty flustered and frustrated and I don't think they accomplished too much. Decided not to have Ashley come back for the second two hours since we didn't think the device would hold up and Casey was too far gone to do any real work :)
In the meanwhile, Tami came to do school with Colin. Had a hard time getting his switch reliable so they did some work on nouns and such with the switch and Tami pressing the switch with him. We had promised that Colin could have a water gun fight if he worked well, so that's what we did.
Helen, Tami's daughter was not thrilled to have to participate with the water fight but I think she ended up having a good time. At one point we had the boys, Tami, Helen, Nancy H, Gene, Aunt Ju and myself out there all squirting and running around! Mel came in the middle of this and we went to ambush her but Tami tipped her off. We got her anyway ;)
It took awhile but Mel managed to get Casey's pages on Colin's device. She put buttons on each boys' page so it would be easy to get from one page set to another. Woot, woot!
This afternoon has been low-key. Colin watching his shows. Casey exploring Colin's DynaVox. His Google Maps look totally different. He also has been using Tux Paint (he used to have it on his) and Google Earth.
Gene dropped off the DynaVox at UPS. Hopefully it will be there by the end of the day Monday, I think. This is a huge thing for poor Casey. Hopefully things will work smoothly and we'll get his device back soon.
This whole ordeal is making me think that we really do need to explore getting him a new device. It's been about 5 years so he is "due." I just don't know which direction to go in. DynaVox again, Tobii, PRC, tablet, PC with eye gaze bar? I think we need an evaluation done by a unbiased someone. Looking into finding a center in New England that we could go to. There just isn't anything in Vermont that would fit what Casey would need. We're just too small of a state with a small population and probably a very low population of kids using assistive technology/augumentative communication. So, maybe Boston again? Maybe Helen Hayes in NY?? Hmmm...
Gene was on with DynaVox once or twice and it really seemed like it would just need to be reflashed--meaning they'd wipe the device clean and re-put on the software. But that means sending it in. UGH.
Mel, at least I think it was her, thought that we could put Casey's pages on Colin's device so he wouldn't have to be without (Colin doesn't use his as often as Casey). She said she'd be able to figure this out for us. So, then went trying to figure out where his external hard drive was at school. Nancy H and I went to school and found our way in and to where Paula's desk was and found the drive. Whew! Got to see Mr. Wyndorf one of Casey's middle school teachers and one of his all time favorites.
The poor thing would open up multiple windows with weird stuff and then the screen would not allow us to close the windows so we'd have to use a keyboard/mouse to close it and restart, etc. Gene did all sorts of poking around and cleaning up and scans. At one point he did something with Norton Power Eraser and it removed the entire DynaVox software, yikes! He was able to undo what he did and we got the software back. Sometimes it would work okay. Last evening he was on his communication pages AND his Google maps and it worked for about an hour. Then out of no where it started opening up multiple weird windows and restarted itself. This was right after Gene went out to go to the store, of course. When he got back he managed to get the communication back. Then it was time for bed.
So, Casey had school with Ashley at 9:00. We thought at least the pages would work for him to do some school, but things were screwed up. Multiple restarts and some prodding from Gene it worked. But, Casey was pretty flustered and frustrated and I don't think they accomplished too much. Decided not to have Ashley come back for the second two hours since we didn't think the device would hold up and Casey was too far gone to do any real work :)
In the meanwhile, Tami came to do school with Colin. Had a hard time getting his switch reliable so they did some work on nouns and such with the switch and Tami pressing the switch with him. We had promised that Colin could have a water gun fight if he worked well, so that's what we did.
Helen, Tami's daughter was not thrilled to have to participate with the water fight but I think she ended up having a good time. At one point we had the boys, Tami, Helen, Nancy H, Gene, Aunt Ju and myself out there all squirting and running around! Mel came in the middle of this and we went to ambush her but Tami tipped her off. We got her anyway ;)
It took awhile but Mel managed to get Casey's pages on Colin's device. She put buttons on each boys' page so it would be easy to get from one page set to another. Woot, woot!
This afternoon has been low-key. Colin watching his shows. Casey exploring Colin's DynaVox. His Google Maps look totally different. He also has been using Tux Paint (he used to have it on his) and Google Earth.
Gene dropped off the DynaVox at UPS. Hopefully it will be there by the end of the day Monday, I think. This is a huge thing for poor Casey. Hopefully things will work smoothly and we'll get his device back soon.
This whole ordeal is making me think that we really do need to explore getting him a new device. It's been about 5 years so he is "due." I just don't know which direction to go in. DynaVox again, Tobii, PRC, tablet, PC with eye gaze bar? I think we need an evaluation done by a unbiased someone. Looking into finding a center in New England that we could go to. There just isn't anything in Vermont that would fit what Casey would need. We're just too small of a state with a small population and probably a very low population of kids using assistive technology/augumentative communication. So, maybe Boston again? Maybe Helen Hayes in NY?? Hmmm...
Sunday, July 20, 2014
Swim, swim, tired,tired.
Goal today was to do some cleaning up on the porch and to get the boys in the pool again. Goals accomplished and now we are beat! I can't believe how tiring doing a little yard work and getting the boys in the pool can be. Plus, being out in the sun must have something to do with it.
Darn Moxie 'picked' me with her nails this morning at 5 AM. I didn't sleep much after that. Got up earlyish. Took advantage of the quiet to take care of some things on my desk and pay bills.
Boys slept in. Stirred them around 10:30 or so. They watched a movie with Nancy while Gene and I did some things on the porch. Redid the wood pile on the porch, threw out and recycled some paper/cardboard junk, put things away, swept, etc. It's a drop in the bucket as to what needs to be done, but it's a start. Got out the white table and washed the cushions.
Beautiful day out so we went ahead and prepped the boys for the pool. Since there was only Gene, myself and Nancy, we took the boys in one at a time. Colin went first. He definitely is more trepidacious than he was last year and he didn't quite "love it" but he did good. I'm sure he'd have more fun if Casey was in with him another person or two. He didn't want to try the float but I made him, haha.
Got Colin out and covered in towels and then it was Casey's turn. He had started fussing about having to go in but once he was in, he was very happy (except when Nancy was taking his picture).
I would have stayed in with him longer but my hands were getting tired holding him and Gene was to chicken to put him on the float. Maybe next time we'll try it when we have more hands.
Casey got his shower and then Colin did. Nancy changed the sheets on the beds and we are all sitting here pooped out. I still have formula to make and laundry to finish and things to pick up around here. I'm hoping Gene will make something delicious for supper.
Oh, AC called this morning. They were going to Denali. Then she called and talked to Casey later on and said it was cold and she was wearing a sweater. She said Judy is taking tons of pictures so I hope to see some soon. Really curious about their trip! And, I'm sure Peggy is curious because she is heading to Alaska the end of August/beginning of September.
Darn Moxie 'picked' me with her nails this morning at 5 AM. I didn't sleep much after that. Got up earlyish. Took advantage of the quiet to take care of some things on my desk and pay bills.
Boys slept in. Stirred them around 10:30 or so. They watched a movie with Nancy while Gene and I did some things on the porch. Redid the wood pile on the porch, threw out and recycled some paper/cardboard junk, put things away, swept, etc. It's a drop in the bucket as to what needs to be done, but it's a start. Got out the white table and washed the cushions.
Beautiful day out so we went ahead and prepped the boys for the pool. Since there was only Gene, myself and Nancy, we took the boys in one at a time. Colin went first. He definitely is more trepidacious than he was last year and he didn't quite "love it" but he did good. I'm sure he'd have more fun if Casey was in with him another person or two. He didn't want to try the float but I made him, haha.
Casey got his shower and then Colin did. Nancy changed the sheets on the beds and we are all sitting here pooped out. I still have formula to make and laundry to finish and things to pick up around here. I'm hoping Gene will make something delicious for supper.
Oh, AC called this morning. They were going to Denali. Then she called and talked to Casey later on and said it was cold and she was wearing a sweater. She said Judy is taking tons of pictures so I hope to see some soon. Really curious about their trip! And, I'm sure Peggy is curious because she is heading to Alaska the end of August/beginning of September.
Saturday, July 19, 2014
Car show
Today the boys slept in nice and late. That's a good thing because I was fuzzy this morning after being nursey all night. Actually, Colin slept better than Casey, which is kind of a reverse. One of these days they will BOTH sleep well for me.
Nancy H came at 2. We let them laze around for a while and then got them washed up and dressed much to their chagrin. They thought they'd get to stay dirty all day/night, ha ha.
We decided to get out and go to the car show in Colchester at Mike's Auto. Nice low-key, outside event in the evening. So we headed out to the bay. Finally found a place to park. The lot we were in had a little path bypassing the barriers..we decided to try it although it was up a little hill. Weeellll, Gene and Casey made it with the power chair but it was kind of scary watching them go up. I started up with Colin's chair, pushing, pushing. Didn't go too well until a couple that saw my struggle came over and pulled. Thank you whoever you are!
Casey was actually kind of loud and grumpy while we walked though. I think he was mad because he couldn't really use his DynaVox because it was so bumpy and his hand wouldn't stay properly in place. Colin liked it but got bored after about 60 cars or so. We saw Lynne Mazza and she said that there were way more than 100 cars there because this year they had to park down the middle of the strip and hadn't had to do that before. Lots of Mustangs and lots of Camaros and so many other cool old and really old cars. There was one car that we saw for sale for $95,000!! When we had seen them all, we took the long way around because it wouldn't have been too pretty going downhill with the chairs.
Headed home after that and it was time for bed. The end, good night!
Nancy H came at 2. We let them laze around for a while and then got them washed up and dressed much to their chagrin. They thought they'd get to stay dirty all day/night, ha ha.
We decided to get out and go to the car show in Colchester at Mike's Auto. Nice low-key, outside event in the evening. So we headed out to the bay. Finally found a place to park. The lot we were in had a little path bypassing the barriers..we decided to try it although it was up a little hill. Weeellll, Gene and Casey made it with the power chair but it was kind of scary watching them go up. I started up with Colin's chair, pushing, pushing. Didn't go too well until a couple that saw my struggle came over and pulled. Thank you whoever you are!
Casey was actually kind of loud and grumpy while we walked though. I think he was mad because he couldn't really use his DynaVox because it was so bumpy and his hand wouldn't stay properly in place. Colin liked it but got bored after about 60 cars or so. We saw Lynne Mazza and she said that there were way more than 100 cars there because this year they had to park down the middle of the strip and hadn't had to do that before. Lots of Mustangs and lots of Camaros and so many other cool old and really old cars. There was one car that we saw for sale for $95,000!! When we had seen them all, we took the long way around because it wouldn't have been too pretty going downhill with the chairs.
Headed home after that and it was time for bed. The end, good night!
Thursday, July 17, 2014
Mama gets out
Early this morning I did my usual thing and start a load of laundry. Or, I should say, I tried to start a load. The machine made it's dings, but no lights came on and it wouldn't run. ARGH!! Gene did some Googling and emptied out the drain and it worked!!!
Yes, I actually got out of the house today and out of Milton, whoo hooo! I went to Essex Junction and dropped my eyeglasses off to get reshaped from when I stepped on them in the middle of the night when we were at the Reilly's house in mid May! Went to the credit union and picked up my new debit card (our bank account was hacked a couple of weeks ago and we needed new cards with new numbers). The teller had me use the ATM machine to make sure the card worker. What a trip! I haven't used an ATM in probably 15 or more years!! I guess I don't get out much, and when I do get out I use my debit card. I was nervous that I wouldn't know how to use it but I guess it's like riding a bike. Then I hit Big Lots. I managed to spend $50 without really buying anything, ha ha. Let's see, I bought a set of pool floats, a solar butterfly for my front garden, some Swiss Rolls (I always crave junk food when I go to Big Lots--not sure why), shower curtain liner, table cloth, and a dog leash. I bought Casey dental floss, lip balm and new ear buds (neon green) and I found Colin some of those reusable ice cube thingys and lip balm. And yes, they were thrilled!! Oh, Colin likes to use "hot packs" in the winter and "cold packs" in the summer so these ice cube sheets are perfect for him.
Headed home after that. I was probably gone 2 hours at the most but it was nice.
Casey had just finished his first half of summer school with Ashley and was on his break. Colin was watching a movie and getting ready for Tami to come for his school.
Casey wasn't the most cooperative and I didn't get to hear much of what they did, but we'll see Ashley on Monday and catch up. Not sure of their outing on Monday. Casey got obsessed on riding the city bus so he wouldn't tell Ashley where else he was interested in going. That is something we had talked about but couldn't convince Casey that it was something that could happen right away. We have to investigate when the bus comes to Milton, where it goes, when, and when the handicap bus comes here. Nancy discovered some program that could make this happen so we'll have to read up on it and see how to get this going for Casey. He rode the city bus a short way several years ago, in Burlington, and has always wanted to do it again.
Tami (SLP)came for Colin. We spent much of the time positioning the table and the DynaVox and his switch. Maybe by the time school starts again we'll have the best positioning down pat. Since we got the new beds right before school ended we hadn't had much of a change to get used to a new configuration and routine. Struggled to get Colin to write a sentence...lots of owws and switch repositioning but it's all a learning curve for Tami. She hasn't worked directly with Colin since maybe 2nd grade??? She's worked with him on Math via VGo but Priscilla was doing the direct things with Colin while Tami was seeing him on the VGo. So this is a good thing because she'll have a better understanding of him and how complicated things are and can bring that back to the team so have a better sense of Colin's skills.
Aunt Chris leaves for her Alaska trip tomorrow so she was here this afternoon to hang out and say her "Goodbyes" "and "I'll miss yous."
Sorry no pictures today.
Yes, I actually got out of the house today and out of Milton, whoo hooo! I went to Essex Junction and dropped my eyeglasses off to get reshaped from when I stepped on them in the middle of the night when we were at the Reilly's house in mid May! Went to the credit union and picked up my new debit card (our bank account was hacked a couple of weeks ago and we needed new cards with new numbers). The teller had me use the ATM machine to make sure the card worker. What a trip! I haven't used an ATM in probably 15 or more years!! I guess I don't get out much, and when I do get out I use my debit card. I was nervous that I wouldn't know how to use it but I guess it's like riding a bike. Then I hit Big Lots. I managed to spend $50 without really buying anything, ha ha. Let's see, I bought a set of pool floats, a solar butterfly for my front garden, some Swiss Rolls (I always crave junk food when I go to Big Lots--not sure why), shower curtain liner, table cloth, and a dog leash. I bought Casey dental floss, lip balm and new ear buds (neon green) and I found Colin some of those reusable ice cube thingys and lip balm. And yes, they were thrilled!! Oh, Colin likes to use "hot packs" in the winter and "cold packs" in the summer so these ice cube sheets are perfect for him.
Headed home after that. I was probably gone 2 hours at the most but it was nice.
Casey had just finished his first half of summer school with Ashley and was on his break. Colin was watching a movie and getting ready for Tami to come for his school.
Casey wasn't the most cooperative and I didn't get to hear much of what they did, but we'll see Ashley on Monday and catch up. Not sure of their outing on Monday. Casey got obsessed on riding the city bus so he wouldn't tell Ashley where else he was interested in going. That is something we had talked about but couldn't convince Casey that it was something that could happen right away. We have to investigate when the bus comes to Milton, where it goes, when, and when the handicap bus comes here. Nancy discovered some program that could make this happen so we'll have to read up on it and see how to get this going for Casey. He rode the city bus a short way several years ago, in Burlington, and has always wanted to do it again.
Tami (SLP)came for Colin. We spent much of the time positioning the table and the DynaVox and his switch. Maybe by the time school starts again we'll have the best positioning down pat. Since we got the new beds right before school ended we hadn't had much of a change to get used to a new configuration and routine. Struggled to get Colin to write a sentence...lots of owws and switch repositioning but it's all a learning curve for Tami. She hasn't worked directly with Colin since maybe 2nd grade??? She's worked with him on Math via VGo but Priscilla was doing the direct things with Colin while Tami was seeing him on the VGo. So this is a good thing because she'll have a better understanding of him and how complicated things are and can bring that back to the team so have a better sense of Colin's skills.
Aunt Chris leaves for her Alaska trip tomorrow so she was here this afternoon to hang out and say her "Goodbyes" "and "I'll miss yous."
Sorry no pictures today.
Tuesday, July 15, 2014
Monday, July 14, 2014
summer school flop and Costco
Colin and I tried to do some school today. He was not so cooperative, sigh. He has perfected the "zone out" look. And, we had a really hard time getting his switches to work right. The other day, we had minimal issues. I just don't get it sometimes.
I gave up on the DynaVox work and decided to do some PT/OT. He worked on spilling the beans. He used his slings (though I need to order him some Angel Arms) to suspend his arms so that he could concentrate on moving his arm, hand and fingers to rock the bean pot and make it spill. He also has to use his brain to plan and trial and error to make this happen so I'm satisfied that he was at least using his brain. Then I put his legs in the slings and he moved them all over the place while he watched something on Netflix. That's about all I got out of him today.
But he looked cute and he was wearing a tee shirt he received from some kiddos in MA that are part of Hugs and Hope. They won an AAU basketball tournament and the all signed a tee shirt for him and sent him letters. I took a couple of pictures of him in his shirt and sent them to the mom of one of the kids. See how cute???!!!
Casey had his outing with Ashley and Nurse Julie today. I think it went okay, although Casey kind of froze (well, started vocalizing loudly) when he was supposed to ask for help at Costco. But he got through it the second time. He wanted to drive but it was really busy so he shut off his chair, ha ha.
After they got home, they "processed" their outing and then he was done for the day.
I gave up on the DynaVox work and decided to do some PT/OT. He worked on spilling the beans. He used his slings (though I need to order him some Angel Arms) to suspend his arms so that he could concentrate on moving his arm, hand and fingers to rock the bean pot and make it spill. He also has to use his brain to plan and trial and error to make this happen so I'm satisfied that he was at least using his brain. Then I put his legs in the slings and he moved them all over the place while he watched something on Netflix. That's about all I got out of him today.
But he looked cute and he was wearing a tee shirt he received from some kiddos in MA that are part of Hugs and Hope. They won an AAU basketball tournament and the all signed a tee shirt for him and sent him letters. I took a couple of pictures of him in his shirt and sent them to the mom of one of the kids. See how cute???!!!
Casey had his outing with Ashley and Nurse Julie today. I think it went okay, although Casey kind of froze (well, started vocalizing loudly) when he was supposed to ask for help at Costco. But he got through it the second time. He wanted to drive but it was really busy so he shut off his chair, ha ha.
After they got home, they "processed" their outing and then he was done for the day.
Sunday, July 13, 2014
TV watching
Much of the time Casey is concerned about Colin. He likes to know he's happy and that he's enjoying himself. Sometimes he will tell us with his DynaVox to get Colin his ipad. Okay, so that is usually a selfish thing because it means he wants to flip channels on the big TV, BUT he still wants Colin to be happy.
Today Casey was flipping channels and found a Planet of the Apes movie. (I have no idea which one). He insisted that Colin get to watch it which made Colin happy. He loves any movie if it has monkeys or apes. I think he had seen one of the Planet of the Apes movies before but not lately so he was very into it. Casey passed the time by Google mapping and listening to music on his ipod.
Today Casey was flipping channels and found a Planet of the Apes movie. (I have no idea which one). He insisted that Colin get to watch it which made Colin happy. He loves any movie if it has monkeys or apes. I think he had seen one of the Planet of the Apes movies before but not lately so he was very into it. Casey passed the time by Google mapping and listening to music on his ipod.
Isn't Colin so funny?? You can hear him saying, "oh ho" (which means "oh no" or "ut oh". And, you can hear Casey vocalizing over something he's not happy about.
Saturday, July 12, 2014
Ahh, swim, swim!
Finally broke in the new pool today. We had planning and prepping to do for the adventure and it all went swimmingly, ha ha, I'm so funny.
Decided to bring Casey out in the shower chair. This way it would be easier to get him out the back and easier to lift him in and out of the pool AND, then he could roll right into the shower afterwards. This saved us a couple of lifting and transfers. Colin went out in his chair (which lays down pretty flat).
Nurse Nancy H was here and Julia, too. AC came to watch also. Between all of us we worked like a well oiled machine. Bathing suits on, sunscreen, hats, pool prepped and umbrella up, vents,suctions put in place, towels, chux readied.
I went in first. Gene lifted Colin in. He was a little freaked as it was pretty cold. We fooled around and did some exercises and played with a ball. Gene didn't want to have both boys in at the same time today but we will do it next time. We always need a couple of people in the pool and a couple of 'dry' people when we have a pool day. We have to hold the boys by their heads/necks and it does get tiring after a while so it's good to have someone fresh to switch out with. We can set Colin up with a neck float and he can float on his own but someone has to be RIGHT there with him and watch him like a hawk. Our big float that Casey could go on had some issues over the winter and we need a new one.
Funny thing. Last year Casey refused to go in the pool. He hated that it wasn't warm like the indoor pool at camp. We didn't make him go in at all. This year I was determined to get him in. We downplayed it and just made it seem like it was no biggie. He started to have a mini meltdown right before he was going in but once he got it in he loved it! He liked the whole experience better than Colin! He laughed and giggled and even though he had goosebumps on his chest, he didn't complain about the temperature. It really was cold but felt good when once you were in and used to it.
Colin chatted with Aunt Chris while Casey, Gene, Julia and I frolicked. Afterwards we got them out and Casey headed into the shower and I got Colin freshened up and dressed. Successful afternoon!
Nancy H was in charge of photos. She's not a very experience photo taker nor is she very familiar with my camera. We forgot to bring it out when Colin was in the pool so there are no pics of him. This is what she got of Casey's pool time.
Decided to bring Casey out in the shower chair. This way it would be easier to get him out the back and easier to lift him in and out of the pool AND, then he could roll right into the shower afterwards. This saved us a couple of lifting and transfers. Colin went out in his chair (which lays down pretty flat).
Nurse Nancy H was here and Julia, too. AC came to watch also. Between all of us we worked like a well oiled machine. Bathing suits on, sunscreen, hats, pool prepped and umbrella up, vents,suctions put in place, towels, chux readied.
I went in first. Gene lifted Colin in. He was a little freaked as it was pretty cold. We fooled around and did some exercises and played with a ball. Gene didn't want to have both boys in at the same time today but we will do it next time. We always need a couple of people in the pool and a couple of 'dry' people when we have a pool day. We have to hold the boys by their heads/necks and it does get tiring after a while so it's good to have someone fresh to switch out with. We can set Colin up with a neck float and he can float on his own but someone has to be RIGHT there with him and watch him like a hawk. Our big float that Casey could go on had some issues over the winter and we need a new one.
Funny thing. Last year Casey refused to go in the pool. He hated that it wasn't warm like the indoor pool at camp. We didn't make him go in at all. This year I was determined to get him in. We downplayed it and just made it seem like it was no biggie. He started to have a mini meltdown right before he was going in but once he got it in he loved it! He liked the whole experience better than Colin! He laughed and giggled and even though he had goosebumps on his chest, he didn't complain about the temperature. It really was cold but felt good when once you were in and used to it.
Colin chatted with Aunt Chris while Casey, Gene, Julia and I frolicked. Afterwards we got them out and Casey headed into the shower and I got Colin freshened up and dressed. Successful afternoon!
Nancy H was in charge of photos. She's not a very experience photo taker nor is she very familiar with my camera. We forgot to bring it out when Colin was in the pool so there are no pics of him. This is what she got of Casey's pool time.
Monday, July 7, 2014
Summer school starts
First day of summer services for Casey. And, for Colin, too, but I'm doing them--he's not going to the school like we did last year.
Julie had Casey all ready for Ashley when she came at 9:00. Most of the time was spent on chatting and Google mapping and looking at and saving images of whales. Hopefully, they'll get into the swing of things and get some good work done. Planning on having outings on Mondays. They'll stay pretty local since we'll be using our van and Julie will be driving and Ashley doesn't know Casey very well. They'll be able to hit Costco, Hannaford, the library, etc.
Colin and I did our things. I hooked him up to his DynaVox and played around with his switches. He's losing movement in his hands and it's always different each time we use his switch, sigh. He did pretty well with his English/writing. We talked about Wonder and he wrote a few sentences about what we read last night.
Math for us was kind of a bust. Tried about the DreamBox online that the school has licensed for a bunch of the kids to use independently. I'm not a fan. I didn't like directions nor the sections that we opened for Colin, nor the teaching style. I'll plug away a bit more with him on it but may end up doing something else altogether with him.
We also did a science experiment. We made Zombie snacks. Added vinegar, milk and red food dye together so it curdled and made lumps which were zombie snacks. Colin had no interest in the science behind it but liked doing the experiment.
I also forced him to play tic tac toe. He doesn't like it and doesn't get it at all. I'm trying to get him to predict and plan and he is not much for it. He really needs to work on that skill and playing is one simple, quick way to do it but we've tried over and over again but he doesn't get it. I will keep trying and maybe one day it will click and he'll actually like it.
He picked tic tac toe over Scooby Do concentration, so I guess that tells us how much he likes concentration. Just trying to get his brain to get out of a rut and do some real thinking. He smart and has a good memory but only tends to use these traits when it suits him, ha ha.
Julie had Casey all ready for Ashley when she came at 9:00. Most of the time was spent on chatting and Google mapping and looking at and saving images of whales. Hopefully, they'll get into the swing of things and get some good work done. Planning on having outings on Mondays. They'll stay pretty local since we'll be using our van and Julie will be driving and Ashley doesn't know Casey very well. They'll be able to hit Costco, Hannaford, the library, etc.
Colin and I did our things. I hooked him up to his DynaVox and played around with his switches. He's losing movement in his hands and it's always different each time we use his switch, sigh. He did pretty well with his English/writing. We talked about Wonder and he wrote a few sentences about what we read last night.
Math for us was kind of a bust. Tried about the DreamBox online that the school has licensed for a bunch of the kids to use independently. I'm not a fan. I didn't like directions nor the sections that we opened for Colin, nor the teaching style. I'll plug away a bit more with him on it but may end up doing something else altogether with him.
We also did a science experiment. We made Zombie snacks. Added vinegar, milk and red food dye together so it curdled and made lumps which were zombie snacks. Colin had no interest in the science behind it but liked doing the experiment.
He picked tic tac toe over Scooby Do concentration, so I guess that tells us how much he likes concentration. Just trying to get his brain to get out of a rut and do some real thinking. He smart and has a good memory but only tends to use these traits when it suits him, ha ha.
Saturday, July 5, 2014
Water gun fights
Beautiful afternoon. Got the boys up and outside. Took a walk down the road to the pond and back. Colin and I went a couple of times and Casey, Aunt Chris and Nancy H took their time because Casey was driving his power chair and going slow.
Colin and I got bored so we went and got the water guns and played around with them. I had to work a bit to get his switch right so that he could activate and d-activate his switch as he wanted to. We had fun fooling around by ourselves for a while. Then we snuck down the driveway and ambushed Casey, Nancy and AC!
Got Casey's gun out and tried to get his thumb right (he uses a different switch for driving). I think Colin and I were the victors but we all had fun
Colin and I got bored so we went and got the water guns and played around with them. I had to work a bit to get his switch right so that he could activate and d-activate his switch as he wanted to. We had fun fooling around by ourselves for a while. Then we snuck down the driveway and ambushed Casey, Nancy and AC!
Got Casey's gun out and tried to get his thumb right (he uses a different switch for driving). I think Colin and I were the victors but we all had fun
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