The boys were almost perfect for me last night! I almost forgot that I was nursie :) We did have one mishap. Colin has some overflow of formula in his venting syringe. He didn't get wet but the comforter did.
I actually got up earlier than I needed to because I was so rested! Fooled around with my new laptop, started laundry, unloaded the dishwasher, and that kind of stuff while everyone snoozed away.
Julie came at 10:00. Casey got his shower. Movies watched.
Up in chairs and outside around 1:00. You'd think we were torturing the boys by bringing them out in this perfect weather! They NEEDED to watch their ipad while Gene and I planted some flowers and weeded and puttered. Julie kept them happy changing the ipad and taking short walks to break up the 'dreadful' time they were having. Really, the weather couldn't have been more perfect AND I remembered the sunscreen for the boys. Julie put up their umbrellas so they were shaded enough but got to enjoy the fresh spring air. Jaxon came out, too. When he's got his harness on and he's out with all of us he behaves like a good dog. He just wants to be with his people! He had some water and some shade and he got to be near his boys so he had a good afternoon, too.
Oh, and I got another Mother's Day surprise. A huge, beautiful Bleeding Heart hanging basket. I vow to keep it alive.
We didn't quite finish with the front garden so I didn't take any pictures. Still need to do some mulching and some weeding and it should be pretty nice.
After we came back in and got settled, the boys played wii with Julie (Casey double tasked with watching his football). I got in a nap. Gene headed out for a while.
While Gene was out shopping, I spent the evening, flipping, fixing ows, finding new football YouTube videos, making formula, cleaning medical equipment, and trying to find the Hall Entrance beetle in Wizard 101. Whew.
Boys are settled into bed. I wish I had gotten more things done so I could enjoy some down time tomorrow, but beds will need to be changed, formulas, made and 6 loads of laundry folded and put away. I'm pretty sure Gene will feed me, so that's a good thing!
Saturday, May 12, 2012
Friday, May 11, 2012
VGo and lappie
Today I was Colin's nurse. He's so funny because he always gets excited when he doesn't have a nurse so he gets me...like he doesn't "get me" all the time, lol!
Got him in his stander. We're still laying him flat trying to desensitize him. We actually went up one click so we're making progress and he really didn't even notice.
We got to Skype in on the school today while Emily, Courtney and Fred (IT) had a call with the VGo people and got to see some of what it can do and hear about some of the possibilities. I think Colin was VERY excited because he was very vocal (to put it mildly) and then he'd be quiet for a bit and then get really loud again. At first he was closing his eyes but then he got into it and was saying "awesome" and "cool" on his DynaVox and saying "wow" with his words. He decided that if the school purchases it, that he wants to name it Wall-ee.
Priscilla and I didn't really get a feel for what it would be like if Colin was able to get the VGo, so I'll be anxiously awaiting feedback from Emily, Courtney and Fred.
I tried to take a picture of the robot on the ipad on Skype but it didn't come out well. I'm going to post it anyway.
The other exciting news is that Gene decided to get me a new laptop. We've been looking at Costco and here and there and he found a good deal on an HP at Staples. It's an HP Pavilion g6 Notebook PC. It's got pretty good specs and so far I like it! I'm sure what Gene will like the most is not hearing me complain when the plug comes out and the unit shuts off, or me digging for speakers when I want sound, or cursing when I type and the cursor jumps all over. NO more of that nonsense! Whoot! Otherwise, he probably wouldn't have gotten me one :) I guess I'm calling it a Mother's Day gift--even though he's not my mother, ha ha.
Got two loads of laundry out on the line today. Beautiful day, although cooler than it looked. Re-did the Vacation List and printed a copy. Will start putting stuff together for our trip to MA in ONE week!
Oh, BTW, if anyone would like to donate to FSMA for our walk, here is the link:
I hate to keep asking for donations, since so many of you have graciously donated to our van fund but if you're willing and able to donate, we'd be thrilled!
Got him in his stander. We're still laying him flat trying to desensitize him. We actually went up one click so we're making progress and he really didn't even notice.
We got to Skype in on the school today while Emily, Courtney and Fred (IT) had a call with the VGo people and got to see some of what it can do and hear about some of the possibilities. I think Colin was VERY excited because he was very vocal (to put it mildly) and then he'd be quiet for a bit and then get really loud again. At first he was closing his eyes but then he got into it and was saying "awesome" and "cool" on his DynaVox and saying "wow" with his words. He decided that if the school purchases it, that he wants to name it Wall-ee.
Priscilla and I didn't really get a feel for what it would be like if Colin was able to get the VGo, so I'll be anxiously awaiting feedback from Emily, Courtney and Fred.
I tried to take a picture of the robot on the ipad on Skype but it didn't come out well. I'm going to post it anyway.
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| Can you see the robot?? |
Got two loads of laundry out on the line today. Beautiful day, although cooler than it looked. Re-did the Vacation List and printed a copy. Will start putting stuff together for our trip to MA in ONE week!
Oh, BTW, if anyone would like to donate to FSMA for our walk, here is the link:
I hate to keep asking for donations, since so many of you have graciously donated to our van fund but if you're willing and able to donate, we'd be thrilled!
Thursday, May 10, 2012
Exciting school/Colin news!
Friday, Colin's special ed teacher is going to test out the VGo robot from school. From what she told me, she'll download some software on her computer that will allow her to see and control the VGo robot in their warehouse somewhere and someone will talk with her. Priscilla, Colin and I plan on Skyping in and watching/listening to Emily and watch her while she manipulates the robot.
If it seems like something that might work for Colin, the school will get a 30 day free trial! Whoo hoo!
Emily made a chart comparing what Colin can do now with the PolyCom software and Skype, and how the VGo would increase Colin's ability to participate in school academics and activities and increase the reliability and the quality of picture/sound, hopefully. So, the school is considering it and I'm very grateful and excited!
Oh, if you're curious about VGo, here is a link to some YouTube videos.
If it seems like something that might work for Colin, the school will get a 30 day free trial! Whoo hoo!
Emily made a chart comparing what Colin can do now with the PolyCom software and Skype, and how the VGo would increase Colin's ability to participate in school academics and activities and increase the reliability and the quality of picture/sound, hopefully. So, the school is considering it and I'm very grateful and excited!
Oh, if you're curious about VGo, here is a link to some YouTube videos.
Wednesday, May 9, 2012
Endo and hair cuts
Another appointment today. Today was meeting with the endocrinologist, Dr. Zimacas. It's been about 3 years since we've seen him and about 2 years or so since the boys had their last Pamindronate infusion for bone density. We didn't have the worst experiences with the Pamidronate, but it certainly wasn't smooth sailing. So I kind of dropped the ball on them. One of the main reasons I stopped was that when the boys had their bone scans to check their density, the results came back as unreadable. I can't really understand that because so many other SMA kids get scans done and their results are readable. Dr. Z said because of their contractures and Casey's rods, that it's next to impossible to get good results, period. And, that there is a wide margin for error each time so it's very hard to see true improvements. Anyway, I'm not sure if I agree with that part. I would like to try to get baselines on the boys some time but I won't push for it at this time.
Dr. Z spent a lot of time talking about the thoughts on how Pamindronate works in increasing bone density scores in certain populations of people...I won't bore you with that here. He also acknowledged my concerns about if this will help long term and if the density increases we may see are truly increases in density that will help prevent fractures in the future.
He also made sure to let me know that this is not a 'standard practice' and it's totally up to us as to whether we want to proceed or not. So if we decide NOT to do it, he would be fine with it. He said if we had opted not to do Vitamin D--he would convince us and show us the proven data on Vitamin D and bone health. But since this isn't proven, he understands that we are the ones to make the choice to proceed or not.
If we do go ahead, he really wants us to make the commitment to do it every 3 or 4 months or so, two days in a row (about half a day each). It would include them getting IVs each time. That is one of my biggest fears. They are hard sticks and it's such a stressful thing for them and for us. Sigh. The first time we had them done Colin's IV infiltrated over night. Ugh. The second time we saved the IV overnight but then it wouldn't draw so it had to be redone. They also had some flu-like side effects but I understand that each time they are administered the side effects become less.
So, at this moment I am leaning towards doing them. I will talk with Gene some more and then decide. If we do go ahead, I'd like to get two doses in--maybe June and October and then stay away from the hospital until spring.
He examined the boys and found them to be progressing puberty-wise. Colin a little slower than Casey :)
Afterwards we decided to play hookey from school. I had been planning on dropping Casey off at school and having Priscilla come for Colin but we decided to get haircuts instead. We called Gene and he said he'd meet us at Garry's Barber Shop to help.
The boys had the same hair cutters as they had last time so they were pretty efficient and did a good job. Gene's friend, Lori, started goading Gene to get his hair cut (it's been a LONG time) and Casey chimed in, so he folded and let her cut his hair and trim his beard.
Dr. Z spent a lot of time talking about the thoughts on how Pamindronate works in increasing bone density scores in certain populations of people...I won't bore you with that here. He also acknowledged my concerns about if this will help long term and if the density increases we may see are truly increases in density that will help prevent fractures in the future.
He also made sure to let me know that this is not a 'standard practice' and it's totally up to us as to whether we want to proceed or not. So if we decide NOT to do it, he would be fine with it. He said if we had opted not to do Vitamin D--he would convince us and show us the proven data on Vitamin D and bone health. But since this isn't proven, he understands that we are the ones to make the choice to proceed or not.
If we do go ahead, he really wants us to make the commitment to do it every 3 or 4 months or so, two days in a row (about half a day each). It would include them getting IVs each time. That is one of my biggest fears. They are hard sticks and it's such a stressful thing for them and for us. Sigh. The first time we had them done Colin's IV infiltrated over night. Ugh. The second time we saved the IV overnight but then it wouldn't draw so it had to be redone. They also had some flu-like side effects but I understand that each time they are administered the side effects become less.
So, at this moment I am leaning towards doing them. I will talk with Gene some more and then decide. If we do go ahead, I'd like to get two doses in--maybe June and October and then stay away from the hospital until spring.
He examined the boys and found them to be progressing puberty-wise. Colin a little slower than Casey :)
Afterwards we decided to play hookey from school. I had been planning on dropping Casey off at school and having Priscilla come for Colin but we decided to get haircuts instead. We called Gene and he said he'd meet us at Garry's Barber Shop to help.
The boys had the same hair cutters as they had last time so they were pretty efficient and did a good job. Gene's friend, Lori, started goading Gene to get his hair cut (it's been a LONG time) and Casey chimed in, so he folded and let her cut his hair and trim his beard.
 | |
| Yes, you are seeing a miracle...Gene is getting his hair cut (and his beard/mustache cut and trimmed)! |
Tuesday, May 8, 2012
Ridiculous Morning
The boys had their physicals with Dr. D this morning. The appointments were at 9:30 and 10:00. No Collie nurse today but I had everything under control and got up early and took a shower myself so I could get Collie ready. It always takes us longer than we think to get ready but we were out the door by 9:15 (it took me a while to get Colin in his new chair and find the buckles and harness straps since it's the first time he's actually ridden in the van in his chair).
It was disgustingly blustery and rainy and we were drenched and icy by the time we got into Dr. D's. It felt more like a fall rain instead of a warm rain like it should be in May. We were in the office waiting room by 9:27, not bad!
Well, we waited and waited. We weren't called into a room until 10:08! Ridiculous! I went in with Casey first and Julie stayed with Collie.
What a production! Finally we started doing the talking part. Casey kept telling Dr. D "that I have to get out of here." He was also obsessing about getting a shot even though I kept telling him that he didn't have to get one this time. He also told Dr. D that he was interested in girls :) Then, since it was a complete physical, Julie helped me get Casey on the table. I had to completely get him undressed including his socks and AFOs. Exam and more talking. Then get him dressed all the way. Whew.
Then Julie sat with Casey while Colin has his exam. Colin was a little anxious, which is par for the course, but did okay. His exam went a little quicker. Dr. D helped me get him on the table. Get him undressed, then dressed. More whew. Then it was time for shots. I had warned him that he was getting one--he needed the booster for Pertussis which includes Tetanus and Diphtheria. I wasn't thinking thinking this so I didn't tell him he'd be hurting for a day or so afterwards from the darn old Tetanus shot. I HATE them, and I imagine it will hurt him, too, although since he doesn't have as much muscle maybe it won't??? He also got the Meningococcal shot. The two nurses tag teamed and it was over quickly. He cried and cried and once it was done he stopped and just whined a bit.
It was still pouring when we left. We were grumpy and wet. We called Mel and asked her if she'd be willing to come to see Casey at home for an hour instead of bringing him in. It was WAY later than we had planned and he was wet...She was happy to do it.
We hit Dunkin' Donuts and headed home. Colin said he wanted a chocolate munchkin for having to get a shot.
Priscilla was waiting for us when we got home at NOON! I had originally thought we'd be home by 11:00 at the latest. Grrr.
Colin got settled into his school bed and they got to work.
Casey had a short break out of his chair and then back up for Mel. She put some new pages on his DynaVox for him.
I was beat. Going to the doctor always wears me out (physically and emotionally) and having done Thursday, Friday, Saturday and Sunday nights with the boys (no nurse) my sleep patterns are screwed up. So, Julie and Gene kept an ear out for Colin while I took a nap.
My nap was epic! Ahhh! And, Nugget let me snuggle him the whole time. I had my arm wrapped around him while we both slept. VERY unusual for him. He must have been cold!
Now Casey is snuggled on the couch with his DynaVox and beloved ipad watching football, Colin is playing a Nancy Drew wii game with Julie, I'm typing this, and Gene and Jaxon are upstairs on a work call. Fire in the woodstove.
PS. Weighed both boys this morning.
Casey weighed in at 66 pounds and Colin at 48 pounds.
It was disgustingly blustery and rainy and we were drenched and icy by the time we got into Dr. D's. It felt more like a fall rain instead of a warm rain like it should be in May. We were in the office waiting room by 9:27, not bad!
Well, we waited and waited. We weren't called into a room until 10:08! Ridiculous! I went in with Casey first and Julie stayed with Collie.
What a production! Finally we started doing the talking part. Casey kept telling Dr. D "that I have to get out of here." He was also obsessing about getting a shot even though I kept telling him that he didn't have to get one this time. He also told Dr. D that he was interested in girls :) Then, since it was a complete physical, Julie helped me get Casey on the table. I had to completely get him undressed including his socks and AFOs. Exam and more talking. Then get him dressed all the way. Whew.
Then Julie sat with Casey while Colin has his exam. Colin was a little anxious, which is par for the course, but did okay. His exam went a little quicker. Dr. D helped me get him on the table. Get him undressed, then dressed. More whew. Then it was time for shots. I had warned him that he was getting one--he needed the booster for Pertussis which includes Tetanus and Diphtheria. I wasn't thinking thinking this so I didn't tell him he'd be hurting for a day or so afterwards from the darn old Tetanus shot. I HATE them, and I imagine it will hurt him, too, although since he doesn't have as much muscle maybe it won't??? He also got the Meningococcal shot. The two nurses tag teamed and it was over quickly. He cried and cried and once it was done he stopped and just whined a bit.
It was still pouring when we left. We were grumpy and wet. We called Mel and asked her if she'd be willing to come to see Casey at home for an hour instead of bringing him in. It was WAY later than we had planned and he was wet...She was happy to do it.
We hit Dunkin' Donuts and headed home. Colin said he wanted a chocolate munchkin for having to get a shot.
Priscilla was waiting for us when we got home at NOON! I had originally thought we'd be home by 11:00 at the latest. Grrr.
Colin got settled into his school bed and they got to work.
Casey had a short break out of his chair and then back up for Mel. She put some new pages on his DynaVox for him.
I was beat. Going to the doctor always wears me out (physically and emotionally) and having done Thursday, Friday, Saturday and Sunday nights with the boys (no nurse) my sleep patterns are screwed up. So, Julie and Gene kept an ear out for Colin while I took a nap.
My nap was epic! Ahhh! And, Nugget let me snuggle him the whole time. I had my arm wrapped around him while we both slept. VERY unusual for him. He must have been cold!
Now Casey is snuggled on the couch with his DynaVox and beloved ipad watching football, Colin is playing a Nancy Drew wii game with Julie, I'm typing this, and Gene and Jaxon are upstairs on a work call. Fire in the woodstove.
PS. Weighed both boys this morning.
Casey weighed in at 66 pounds and Colin at 48 pounds.
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