Today was belly tube changing day. Both boys got new Mic-Key tubes. No problems changing them. Daddy is the best tube changer, although Colin squeezed out some tears in anticipation (they were totally fake tears :) )
Lazy day. Way cooler than it has been. We were totally spoiled with 70-80 degree weather. It's back to normal now.
Gene spray painted Casey's old changing table black today. He needs one more day to touch it up and it will look pretty decent. Then he has the wooden bookcase to paint (although he is reluctant to do it since it's real wood). But, Casey's room is looking pretty good. Need to find some sort of springy/summery quilt in orange and black for his bed. Probably will be hard to find, but I'm going to try!
Casey had a tub bath. Colin watched lots of cartoons. I found an R.L. Stine marathon on The Hub but his heart rate went way up and he kept saying "no." Maybe he's getting over his fascination with scary shows!
Nancy H. and the boys played some Poptropica and The 39 Clues.
Laundry and puttering for me, whoo hoo!
Saturday, March 24, 2012
Thursday, March 22, 2012
Tuesday, March 20, 2012
Cool news for our Wheels for O'Neills!
Got a phone call today from a representative at Ride-Away in Essex Junction. They're a local business that specializes in mobility products and accessible vehicles. They have branches along the East Coast so there's a lot of possible inventory that could work for us. Someone had been at one of the stores in Milton that had the flier that the kids from school made up about our van fundraiser. This person took a copy down to Ride-Away and showed it to him so he gave us a call. It kind of got me fired up to really get things going. He just outfitted someone with a van that would fit 3 wheelchairs with lots of extra seats! It's a local family and he said he was sure they'd be happy for us to take a look at it and see how it's set up. That's been a big thing for me--I just need to SEE some different vans and configurations so I can kind of get more of an idea of what we're looking for AND how much we'll need to fund.
He talked out how he will come and support us at events and even help us with some items that we may use for our tag sale. He said he could get us in touch with another family who had had success in fundraising and would be able to give us some tips. So, things are starting to feel good!
I also have another idea up my sleeve but need to talk to a couple of people first ;-)
He talked out how he will come and support us at events and even help us with some items that we may use for our tag sale. He said he could get us in touch with another family who had had success in fundraising and would be able to give us some tips. So, things are starting to feel good!
I also have another idea up my sleeve but need to talk to a couple of people first ;-)
Tuesday, March 13, 2012
Wheels for O'Neills update!
Well, let's see. We're making little bits of progress and it's all good! The kids at Casey's school that are working on fundraising for their community projects are starting to pick up steam.
Cool story. Gene talked with one of the employees (or owner--not sure) last week when he was gassing up the van. She commented on it and he said he doesn't like to drive it unless he needs to because it's really for his boys that have wheelchairs hence the lift...Then, he was there again and she recognized him/the van and said, "We have a nice little fundraiser going on inside for your boys. There's already about $7 in it (the container)." The kids had just been there earlier in the day and had asked to have the container placed. Very cool.
I have only heard little bits here and there but I guess the kids bought some containers and printed out the boys picture and wrote something up and made very nice collection containers. They've been busy putting them around town.
Saturday was the beCAUSE craft show and Auntie Jenny Hats (AKA Jennifer Knowles/Jenny Bower) sold her adorable, one-of-a-kind, knitted baby hats for the boys van fund. $100 for the van fund! And, she says she has some custom orders in progress so we will add to that amount. Jennifer is the best and has always been a huge support to our family ever since Casey was a baby!!
Received our VistaPrint business cards the other day and the Imprint.com Wheels for O'Neills red/blue wristbands today. The cards and wristbands look great. I've put a card and bracelet in ziplock baggies to sell for $2 each. The kids at school are interested in selling them. I'll also be selling them around here or where ever I may be (not that I get out much, but I'll figure something out!).
I'd love to do a BIG fundraiser but it's not going to happen this spring/summer....maybe fall? With all the changes in nursing staff and who knows what we may face with Colin (scoliosis surgery? trach surgery?) I just don't know how we could get a big fundraiser planned.
We will have a garage/yard sale this summer. I'd like to incorporate some other small events at the sale like book signing, face painting, carnival for kids, or other such things as well.
My goal is to have a new van by March of 2013 so that we can drive out to Ohio and see my niece, Jessi, get married. It's a do-able goal, right?
If anyone out there has any ideas for any fundraisers that we might be able to plan and do, please let me know!
Cool story. Gene talked with one of the employees (or owner--not sure) last week when he was gassing up the van. She commented on it and he said he doesn't like to drive it unless he needs to because it's really for his boys that have wheelchairs hence the lift...Then, he was there again and she recognized him/the van and said, "We have a nice little fundraiser going on inside for your boys. There's already about $7 in it (the container)." The kids had just been there earlier in the day and had asked to have the container placed. Very cool.
I have only heard little bits here and there but I guess the kids bought some containers and printed out the boys picture and wrote something up and made very nice collection containers. They've been busy putting them around town.
Saturday was the beCAUSE craft show and Auntie Jenny Hats (AKA Jennifer Knowles/Jenny Bower) sold her adorable, one-of-a-kind, knitted baby hats for the boys van fund. $100 for the van fund! And, she says she has some custom orders in progress so we will add to that amount. Jennifer is the best and has always been a huge support to our family ever since Casey was a baby!!
Received our VistaPrint business cards the other day and the Imprint.com Wheels for O'Neills red/blue wristbands today. The cards and wristbands look great. I've put a card and bracelet in ziplock baggies to sell for $2 each. The kids at school are interested in selling them. I'll also be selling them around here or where ever I may be (not that I get out much, but I'll figure something out!).
I'd love to do a BIG fundraiser but it's not going to happen this spring/summer....maybe fall? With all the changes in nursing staff and who knows what we may face with Colin (scoliosis surgery? trach surgery?) I just don't know how we could get a big fundraiser planned.
We will have a garage/yard sale this summer. I'd like to incorporate some other small events at the sale like book signing, face painting, carnival for kids, or other such things as well.
My goal is to have a new van by March of 2013 so that we can drive out to Ohio and see my niece, Jessi, get married. It's a do-able goal, right?
If anyone out there has any ideas for any fundraisers that we might be able to plan and do, please let me know!
Friday, March 9, 2012
Casey visits the ER
This post comes from my facebook posts from Friday, March 9th.
8:30 AM
Poor Casey must be channeling his inner MJ Queen. He was very upset yesterday when I showed him the picture of what came out of her trach. He has tons of fresh blood in his mouth (not bloody plugs like MJ, but he can summon only so much of a person, lol). He only had a tad in his trach, more likely from some slipping down. If it doesn't let up, we'll go over to Dr. DiMichele's but I don't know if he'll be able to see any more than we can as Casey has a tight mouth....
9:47 AM
Looks like we'll bring Casey to the ER to see where all this fresh blood is coming from. None of our docs are around so it's the only choice. It will be a couple of hours before we head out. He's in his power chair at school and that doesn't fit in the van so we have to get him home...yada yada yada. He's in fine spirts but Julie says he seems a little tired.
12:30 PM
Heading out to ER with Casey O'Neill and Nurse Julie Marshall. Last suction was pretty clear so maybe we're over the worst.
1:45 PM
We're in a room. (ER Room).
3:15 PM
We're home. Of course the blood stopped right before we headed down to Burlington. We made sure to stay away from the sickies while we waited and we got Triaged and right into a room. The doc (very cute!) couldn't see anything in his ears, nose or throat. We could have had a partial scope but it would have been done by a ENT resident and I'd rather wait and have him see Dr.Hubbel as he knows his baseline and anatomy. So, unless more blood happens, we'll just wait and hope he stays clear. The doc prescribed some numbing ear drops for his poor ear that he always complains about. So, once again I am very happy that we live so close to Fletcher Allen. It was a very good experience in comparison to the last ER visit we made with Colin several years ago.
8:30 AM
Poor Casey must be channeling his inner MJ Queen. He was very upset yesterday when I showed him the picture of what came out of her trach. He has tons of fresh blood in his mouth (not bloody plugs like MJ, but he can summon only so much of a person, lol). He only had a tad in his trach, more likely from some slipping down. If it doesn't let up, we'll go over to Dr. DiMichele's but I don't know if he'll be able to see any more than we can as Casey has a tight mouth....
9:47 AM
Looks like we'll bring Casey to the ER to see where all this fresh blood is coming from. None of our docs are around so it's the only choice. It will be a couple of hours before we head out. He's in his power chair at school and that doesn't fit in the van so we have to get him home...yada yada yada. He's in fine spirts but Julie says he seems a little tired.
12:30 PM
Heading out to ER with Casey O'Neill and Nurse Julie Marshall. Last suction was pretty clear so maybe we're over the worst.
1:45 PM
We're in a room. (ER Room).
3:15 PM
We're home. Of course the blood stopped right before we headed down to Burlington. We made sure to stay away from the sickies while we waited and we got Triaged and right into a room. The doc (very cute!) couldn't see anything in his ears, nose or throat. We could have had a partial scope but it would have been done by a ENT resident and I'd rather wait and have him see Dr.Hubbel as he knows his baseline and anatomy. So, unless more blood happens, we'll just wait and hope he stays clear. The doc prescribed some numbing ear drops for his poor ear that he always complains about. So, once again I am very happy that we live so close to Fletcher Allen. It was a very good experience in comparison to the last ER visit we made with Colin several years ago.
Tuesday, March 6, 2012
Last few hours of winter break...
Boys will be back in school tomorrow. I know Casey is looking forward to it, but my other boy-----NOT! It's so funny how he always gets his point across that he doesn't like school. He does pretty well and learns and usually puts forth an effort, but he much rather be playing wii or Poptropica or Wizard 101 or watching TV or a movie.
We descended on Garry's Barber Shop at the beginning of break. They are so nice and accommodating! They both liked getting their hair duded up. It was Colin's first time at a barber and he thought he was the bomb. I ran over to my eye place. I've had a pressure sore of sorts on my nose where one of the nose pieces rests. I think Jaxon wacked me there and then having the glasses on all the time kept it from healing. Well, she asked me, "Would you like the soft pieces instead of these hard ones??" Duh, who would want hard ones??? It felt so much better instantly and it's just about healed now, but a tad sore.
After haircuts I drove the van across to Big Lots and the boys and Nana L and Nurse Julie walked the boys over. It was so much easier to do that than to load and unload them again. Casey was very good and told Julie the things he was interested in looking at. Colin and Nana did the whole store. I found most of what I needed but NO decent curtain rods. We found a wii game for Colin--it's a Cars Mater racing game.
Colin, Aunt Chris and I went to see Hugo. It was a wonderful movie and very deserving of the awards it received! Colin really liked it, and he totally 'got it' but he said he didn't want the movie when it came out on video, which is weird. I'll ask him some time soon and he'll probably say 'yes' this time.
While we were at the movie, Julie and Casey shopped the outlets. He is banned from the movies until he goes and sees the Hunger Games in a couple of weeks. If he behaves himself at that one, I'll consider taking him again, sigh. Casey was in the Rebok store and kept saying to the clerk, jeans, jeans. She told him they had sweats and workout clothes, but no jeans. Casey couldn't believe it! At the Shoe Discount Store they looked at sneakers but couldn't find any that could work for him. He kept demanding, sneakers, sneakers, sneakers. Julie found a discounted pair of black kind of motorcycle shoe but Casey didn't want them. She told me about them and I wanted them for him--never mind that he didn't! Well, I kept thinking about them (they were Buster Browns for only $15) so I had Gene go for them the next day. He called me and said they didn't have them and everyone was looking for them since they remembered (of course) Casey. It turns out that Julie had been there an hour before and bought them! He wore them today and they look great!
Julie noticed that Casey's power chair frame is BROKEN. We had been noticing that he was sitting a bit funny and that he had been more wobbly than normal. Voila, broken frame! He is getting a new power chair (although it hasn't even been ordered yet) and we just got the electronics fixed. Sigh. Gene thought that he could solder it but then decided he didn't have the right tools/experience so he asked his friend, Tom, who does stuff like that on vehicles all the time and he said he could do it. I was hoping to have it done by the time school was back in session but that hasn't happened yet. Another sigh.
Today I went to the dentist. When I was examined by Dr. Molinari I kept trying to keep him talking as he is SO handsome! It was fun to make him laugh. He's pretty reserved although he's a little more open since he's owned the practice for several years now.
Got home and we packed up and headed out to Spare Time in Colchester for some bowling. Casey (surprise, surprise) decided he didn't want to bowl. He and Julie watched us for a while and then they went cruising and played in the arcade.
We must have been a sorry sight while we bowled! We all had bumpers. Colin used the ramp. Nancy had to use her right hand (she's left handed) because she is still recovering from surgery on her thumb.and has no strength to throw, and I have a weird form. They always put us on the end so it wasn't too bad. We made friends with the group next to us that was kind of wacky too. I ended up winning with a 131, Colin came in second, and Nancy was third. We only played one game but that was enough. Bowling has gotten expensive. We rented 2 pair of shoes, 3 of us played one game and it was about $22!
Afterwards we played some games in the arcade. The boys came away with about 100 tickets between them (which sounds like a lot but is truly a paltry amount). Casey wasn't interested in the prizes so Colin got a pair of walking, chattering teeth and a blue octopus guy.
And now, we're winding down. Have to finish getting stuff ready for school. Casey has a ton of stuff to bring back like cough tubing setups, cleaned pillows and flannel covering, water, and all that kind of stuff.
Julia and I never cleaned up the wish room like we planned. She has a bad knee and has not been fully able to get into projects. Who knows when we'll get a chance again since Colin has school in there every day.
OH, and Paula brought over the finished curtains for the wish room! They are perfect! I have to go somewhere to find some rods I like so we can get them up and those awful Lion King sheets down.
We descended on Garry's Barber Shop at the beginning of break. They are so nice and accommodating! They both liked getting their hair duded up. It was Colin's first time at a barber and he thought he was the bomb. I ran over to my eye place. I've had a pressure sore of sorts on my nose where one of the nose pieces rests. I think Jaxon wacked me there and then having the glasses on all the time kept it from healing. Well, she asked me, "Would you like the soft pieces instead of these hard ones??" Duh, who would want hard ones??? It felt so much better instantly and it's just about healed now, but a tad sore.
After haircuts I drove the van across to Big Lots and the boys and Nana L and Nurse Julie walked the boys over. It was so much easier to do that than to load and unload them again. Casey was very good and told Julie the things he was interested in looking at. Colin and Nana did the whole store. I found most of what I needed but NO decent curtain rods. We found a wii game for Colin--it's a Cars Mater racing game.
Colin, Aunt Chris and I went to see Hugo. It was a wonderful movie and very deserving of the awards it received! Colin really liked it, and he totally 'got it' but he said he didn't want the movie when it came out on video, which is weird. I'll ask him some time soon and he'll probably say 'yes' this time.
While we were at the movie, Julie and Casey shopped the outlets. He is banned from the movies until he goes and sees the Hunger Games in a couple of weeks. If he behaves himself at that one, I'll consider taking him again, sigh. Casey was in the Rebok store and kept saying to the clerk, jeans, jeans. She told him they had sweats and workout clothes, but no jeans. Casey couldn't believe it! At the Shoe Discount Store they looked at sneakers but couldn't find any that could work for him. He kept demanding, sneakers, sneakers, sneakers. Julie found a discounted pair of black kind of motorcycle shoe but Casey didn't want them. She told me about them and I wanted them for him--never mind that he didn't! Well, I kept thinking about them (they were Buster Browns for only $15) so I had Gene go for them the next day. He called me and said they didn't have them and everyone was looking for them since they remembered (of course) Casey. It turns out that Julie had been there an hour before and bought them! He wore them today and they look great!
Julie noticed that Casey's power chair frame is BROKEN. We had been noticing that he was sitting a bit funny and that he had been more wobbly than normal. Voila, broken frame! He is getting a new power chair (although it hasn't even been ordered yet) and we just got the electronics fixed. Sigh. Gene thought that he could solder it but then decided he didn't have the right tools/experience so he asked his friend, Tom, who does stuff like that on vehicles all the time and he said he could do it. I was hoping to have it done by the time school was back in session but that hasn't happened yet. Another sigh.
Today I went to the dentist. When I was examined by Dr. Molinari I kept trying to keep him talking as he is SO handsome! It was fun to make him laugh. He's pretty reserved although he's a little more open since he's owned the practice for several years now.
Got home and we packed up and headed out to Spare Time in Colchester for some bowling. Casey (surprise, surprise) decided he didn't want to bowl. He and Julie watched us for a while and then they went cruising and played in the arcade.
We must have been a sorry sight while we bowled! We all had bumpers. Colin used the ramp. Nancy had to use her right hand (she's left handed) because she is still recovering from surgery on her thumb.and has no strength to throw, and I have a weird form. They always put us on the end so it wasn't too bad. We made friends with the group next to us that was kind of wacky too. I ended up winning with a 131, Colin came in second, and Nancy was third. We only played one game but that was enough. Bowling has gotten expensive. We rented 2 pair of shoes, 3 of us played one game and it was about $22!
Afterwards we played some games in the arcade. The boys came away with about 100 tickets between them (which sounds like a lot but is truly a paltry amount). Casey wasn't interested in the prizes so Colin got a pair of walking, chattering teeth and a blue octopus guy.
And now, we're winding down. Have to finish getting stuff ready for school. Casey has a ton of stuff to bring back like cough tubing setups, cleaned pillows and flannel covering, water, and all that kind of stuff.
Julia and I never cleaned up the wish room like we planned. She has a bad knee and has not been fully able to get into projects. Who knows when we'll get a chance again since Colin has school in there every day.
OH, and Paula brought over the finished curtains for the wish room! They are perfect! I have to go somewhere to find some rods I like so we can get them up and those awful Lion King sheets down.
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| Colin enjoyed a rare tub bath! |
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| The break in Casey's power chair |
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| Rare snuggles between Colin and Moxie |
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| Julia made a segregated pie, ha ha, half blueberry and half cherry. It was good! |
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| Our poster for the beCAUSE craft show coming up March 10th! |
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| Casey sporting his Kentucky Wildcats hat and watching the game |
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