Well...3 is just around the corner. As in the Ben and Daniel will turn 3 on Sunday. WOW. That's all I can say.
They are getting so grown up. Preschool starts this week. Unfortunately Ben won't be able to go on the first day since he has a casting appointment. So Daniel will go all by himself on Wednesday and then they'll both go on Friday.
They tried on their new backpacks and indoor sneakers this afternoon. Neither would take their new sneakers off and Daniel wore his backpack right up til bedtime. Pretty cute stuff.
To celebrate their 3rd birthday, we had pictures done on Sunday and my parent's place. Click here to see a sneak peek. I think they turned out great and can't wait to see the rest. And my favourite...well...the one of Ben on the swing. It makes my heart sing to see him this happy.
Monday, September 13, 2010
Sunday, September 12, 2010
Casting Update
Casting so far has been pretty good. He wore his first sent of casts for 5 days. We took them off the on Labour Day morning. He really didn't want me to take them off, but was OK once I was finished. He had quite a bad blister on his right foot and a small blister on his left. I was surprised to find them since he had tolerated the casts so well and hadn't complained once about them. He even slept great every night with them on.
Standing / walking with the casts went pretty well too. Here he is standing at his train table in his bare belly (he LOVES having a bare belly):
Standing / walking with the casts went pretty well too. Here he is standing at his train table in his bare belly (he LOVES having a bare belly):
We went back in on Wednesday to have another set of casts put on. They were quite surprised that he had blisters. Apparently it's fairly uncommon to get blisters...who knew? After some discussion they decided to just do his left foot and leave the right one to heal. Ben was not impressed that he only got one boot this time!
His physiatrist took measurements of both his hamstrings and calves. At this time, I don't understand the measurement stuff as much as I'd like to. I do know that he is improving. I plan to get our Private PT to go over the measurement stuff with me this week and I'll post more on it once I understand it better.
We only kept that cast on for 2 days. I was scared that the small blister might get worse and the most change happens in the first 24 to 48 hours. Plus, having just one cast was more difficult than having two. Walking with just one was much more difficult for him since he was lopsided.
We head back in on Wednesday this week and hopefully they'll cast both feet this time.
I have to say that casting is nowhere near as bad as I thought it would be. He has tolerated it extremely well with absolutely no complaints. I do think that he's experiencing some muscle weakness. He seems to have a better gait when using his walker, but seems to tire more quickly.
Our Private PT returns this week after being away for the entire summer. I'm anxious to hear her opinion on how Ben is doing and what the Botox and Serial Casting has accomplished so far.
Wednesday, September 1, 2010
New boots
So here's my Ben with his new "boots" as he likes to call them. The day went really well and Ben was a trooper as usual. He always amazes me how well he does with stuff like this.It took about an hour for the PT to do both casts. And he was happy to watch Dora while she worked away. It actually worked out well, because he now has red boots "just like Boots".
These are fibreglass casts. So they'll stay on until Monday and then we'll take them off ourselves. He'll have Monday night, all day Tuesday, and Tuesday night cast-free and then he'll get his next set on Wednesday. We're hoping that he won't lose too much muscle strength by having that time off in between casts. He'll probably have 3 weeks of casting.
The PT said that the most benefit occurs in the first 24 to 48 hours. So if he's complaining and we can't get him to stop, then we should take them off. So far though, he really likes them and there hasn't been any complaining at all.
He's not allowed to walk or stand on them today, but can starting tomorrow. He should be able to walk with his walker even with them on. I'm really hoping that's the case.
So really...today was no big deal. No shots, no anesthetic, no crying. Easy-peasy. Now we just look forward to RESULTS!
Monday, August 30, 2010
Lots of awesome stuff
Well. There's lots of awesome stuff going on around here. And since I can't seem to find the time for a real post, I figured I'd just update you on some of this awesome stuff!
1. I *think* that I may have found a preschool for BOTH Ben and Daniel...that may even take Ben WITHOUT an aide. I've been looking around for a preschool for the boys...nothing fancy...I just think it's time for them to have more time with other kids and more time away from Mommy. I've been calling around and getting pretty much nowhere. Plus, I was expecting to not only pay for preschool but to have to pay for an aide for Ben too. Well. Today I finally remembered the boys' old kindermusik teacher...who I thought also did preschool a few mornings each week. I called her and it turns out she does. 9am til 11am...Wednesday and Friday. And since she already knows us (and Ben), she figures she can handle Ben without an aide (which I know she can). Cool. We're going to check it out next week so I can see how it all works and she can see Ben again and make sure she's OK with it.
2. Ben's going back to Conductive Ed in November! I'm quite thrilled about this. And the main reason why I'm so thrilled is that he's going to have a classmate! A little girl with spastic diplegia CP who is just a year older than Ben is going to be in his class. This is EXACTLY what Ben needs. He LOVES little girls (and already has a few *girlfriends") and I'm sure she'll be a fantastic motivator.
3. Big boys beds are on their way! I finally managed to get around to shopping for the boys' beds. And found something perfect for them. They should arrive sometime in September. They are SO READY for big boy beds...it's all very exciting! And the best part? I just found some really cute bedding today in the Sears Wish Book for only $129 each (for the whole bed-in-a-bag).
4. The weather here in Atlantic Canada has been simply amazing ALL SUMMER LONG. We got back last weekend from a fabulous week of camping on Prince Edward Island. We rented a trailer at a great campground right on the beach. It was simply amazing. The boys had a great time and had so many great experiences...like campfires!
Fun at the campfire with glowsticks!
Daniel riding!
1. I *think* that I may have found a preschool for BOTH Ben and Daniel...that may even take Ben WITHOUT an aide. I've been looking around for a preschool for the boys...nothing fancy...I just think it's time for them to have more time with other kids and more time away from Mommy. I've been calling around and getting pretty much nowhere. Plus, I was expecting to not only pay for preschool but to have to pay for an aide for Ben too. Well. Today I finally remembered the boys' old kindermusik teacher...who I thought also did preschool a few mornings each week. I called her and it turns out she does. 9am til 11am...Wednesday and Friday. And since she already knows us (and Ben), she figures she can handle Ben without an aide (which I know she can). Cool. We're going to check it out next week so I can see how it all works and she can see Ben again and make sure she's OK with it.
2. Ben's going back to Conductive Ed in November! I'm quite thrilled about this. And the main reason why I'm so thrilled is that he's going to have a classmate! A little girl with spastic diplegia CP who is just a year older than Ben is going to be in his class. This is EXACTLY what Ben needs. He LOVES little girls (and already has a few *girlfriends") and I'm sure she'll be a fantastic motivator.
3. Big boys beds are on their way! I finally managed to get around to shopping for the boys' beds. And found something perfect for them. They should arrive sometime in September. They are SO READY for big boy beds...it's all very exciting! And the best part? I just found some really cute bedding today in the Sears Wish Book for only $129 each (for the whole bed-in-a-bag).
4. The weather here in Atlantic Canada has been simply amazing ALL SUMMER LONG. We got back last weekend from a fabulous week of camping on Prince Edward Island. We rented a trailer at a great campground right on the beach. It was simply amazing. The boys had a great time and had so many great experiences...like campfires!
Fun at the campfire with glowsticks!5. We're back doing another session of therapeutic riding and it's even better than the last session. The instructor is really fantastic. Not only is she great with Ben, but she lets Daniel go for a quick ride at the end of the session too. She has small children and gets that it must be hard on Daniel for Ben to always be the one doing the cool stuff. Daniel is just tickled pink that he gets to ride Cowboy too. And the volunteers this time are great too. There's one volunteer that keeps Ben laughing almost the entire time he's riding. He loves her. I am so grateful that we have this awesome and affordable program and it's not even a 5-minute drive from our house.
Daniel riding!OK. I just re-read this post. I can't believe how optomistic I sound...almost annoyingly so. That's so not like me. There is one small thing that isn't so great going on...Ben gets his casts on on Wednesday. And it's supposed to be like 110 freakin' degrees here on Wednesday. I'm really hoping that the results of the casting will be *awesome*, but I can't say that I'm looking forward to 3 weeks of casts. I'm just praying that it doesn't affect his sleep.
I'll keep you posted on the casting. It should be interesting!
Saturday, August 14, 2010
Botox Update
Hi all. Sorry I haven't posted sooner, but as usual, life is a bit crazy around here.
Ben's botox appointment went very well. We were admitted into Paediatrics around noon. Ben was weighed and measured and then we played in the playroom (which was awesome). We probably waited around an hour for the Physiatrist to come.
Once she came, everything happened rather quickly. They put something on the back of each leg (over his hamstrings) to free the skin. Then they gave him an oral anesthetic which did not cause him to fall asleep, but just made him a bit dopey.
About a 1/2 hour later, they administered the botox. 2 injections in each hamstring. Basically, just like getting a vaccine. Ben did cry and we had to hold him down, but he didn't fight it too much. Five minutes later he was totally over it.
In about 10 minutes, the anesthetic started to wear off. He had a snack (the nurse wanted to make sure that he could swallow and that his gag reflex was fine before discharging him). He was very hungry (since he wasn't allowed to eat after breakfast) so he ate and ate.
Then about 3pm, we left. Ben was asleep in the van before we left the parking lot. By the time we got home, he was totally back to normal and didn't seem to remember anything about the day.
It takes between 3 to 7 days before we'll see any results. So we wait. We've also been told to do lots of "long sitting" to stretch out his hamstrings while they're looser from the botox. And of course, have lots of other "exercises" to do during the 3-month window that the botox will be effective.
I guess that's about it. I'll keep you posted on the results as I see them!
Ben's botox appointment went very well. We were admitted into Paediatrics around noon. Ben was weighed and measured and then we played in the playroom (which was awesome). We probably waited around an hour for the Physiatrist to come.
Once she came, everything happened rather quickly. They put something on the back of each leg (over his hamstrings) to free the skin. Then they gave him an oral anesthetic which did not cause him to fall asleep, but just made him a bit dopey.
About a 1/2 hour later, they administered the botox. 2 injections in each hamstring. Basically, just like getting a vaccine. Ben did cry and we had to hold him down, but he didn't fight it too much. Five minutes later he was totally over it.
In about 10 minutes, the anesthetic started to wear off. He had a snack (the nurse wanted to make sure that he could swallow and that his gag reflex was fine before discharging him). He was very hungry (since he wasn't allowed to eat after breakfast) so he ate and ate.
Then about 3pm, we left. Ben was asleep in the van before we left the parking lot. By the time we got home, he was totally back to normal and didn't seem to remember anything about the day.
It takes between 3 to 7 days before we'll see any results. So we wait. We've also been told to do lots of "long sitting" to stretch out his hamstrings while they're looser from the botox. And of course, have lots of other "exercises" to do during the 3-month window that the botox will be effective.
I guess that's about it. I'll keep you posted on the results as I see them!
Wednesday, August 11, 2010
Botox
Just a very quick post to let you know that we're off to Fredericton (90 minute drive away) for Botox tomorrow. Ben will get 2 to 4 injections into each hamstring while under oral anesthetic. The appointment is at 1pm. We need to be there by noon to be admitted into paediatrics.
He is allowed to eat breakfast but nothing after that. That may be difficult but hopefully not too bad.
I'm a bit anxious about it, but excited at the same time. He needs this. He really does. I'm also anxious but excited about the serial casting for his calves in September. His walking has deteriorated alot over the last few months. He's always on his toes. Always. And he falls onto his knees quite often when using his walker. I hate that. I miss the great gait he used to have.
That said...he still loves his walker. And uses it more and more. He's even more confident using it outside on uneven ground. I can't wait til his hamstrings and calves are looser so he can do even better with it.
Wish us luck!
He is allowed to eat breakfast but nothing after that. That may be difficult but hopefully not too bad.
I'm a bit anxious about it, but excited at the same time. He needs this. He really does. I'm also anxious but excited about the serial casting for his calves in September. His walking has deteriorated alot over the last few months. He's always on his toes. Always. And he falls onto his knees quite often when using his walker. I hate that. I miss the great gait he used to have.
That said...he still loves his walker. And uses it more and more. He's even more confident using it outside on uneven ground. I can't wait til his hamstrings and calves are looser so he can do even better with it.
Wish us luck!
Sunday, August 8, 2010
Blah
Our local multiples club had a Family Day today. I was really looking forward to it. It sounded like it would be a great time for all of us. Swimming in the pool, bouncy castles, face-painting and a BBQ. Plus lots of twin families to hang out with.
Well...it didn't turn out so great for us. It wasn't a great day weather-wise, so swimming was a no-go. Since the boys are still quite young, all they do when in the pool is float around in their floaties. If it's not a warm day or a heated pool, then they basically freeze. So we decided to forego the swimming part.
The event was held at a local campground...which I thought would be great. I assumed that there would be a big flat field and that's where everything would be set up. Wrong. It was set up basically right beside a very steep hill. And there was very little room for everything. The ground was so uneven that there was no way that Ben could use his walker. There were 5 and 6 year olds running everywhere which basically overwhelmed BOTH boys. And they just clung to mommy and daddy.
I knew that Ben wouldn't be too keen on the bouncy castles and I was right. Daniel was quite interested, but once inside couldn't handle all the bigger kids.
And there was zero interest in face-painting.
So...after 15 whole minutes, we left.
On the way out, we ran into my friend who also has one twin with CP (although her boys are just over a year old)...and I just couldn't hold it together once I started to explain why we were leaving. And so of course, I had her in tears too. Poor girl.
I can't believe how hard social events can be for us sometimes. And I can't help but wonder if I'm doing a disservice to Daniel by leaving / avoiding these kind of events. It can't be good for him to have so little exposure to this kind of stuff.
I'm feeling pretty down about the whole thing now. Stupid CP.
Well...it didn't turn out so great for us. It wasn't a great day weather-wise, so swimming was a no-go. Since the boys are still quite young, all they do when in the pool is float around in their floaties. If it's not a warm day or a heated pool, then they basically freeze. So we decided to forego the swimming part.
The event was held at a local campground...which I thought would be great. I assumed that there would be a big flat field and that's where everything would be set up. Wrong. It was set up basically right beside a very steep hill. And there was very little room for everything. The ground was so uneven that there was no way that Ben could use his walker. There were 5 and 6 year olds running everywhere which basically overwhelmed BOTH boys. And they just clung to mommy and daddy.
I knew that Ben wouldn't be too keen on the bouncy castles and I was right. Daniel was quite interested, but once inside couldn't handle all the bigger kids.
And there was zero interest in face-painting.
So...after 15 whole minutes, we left.
On the way out, we ran into my friend who also has one twin with CP (although her boys are just over a year old)...and I just couldn't hold it together once I started to explain why we were leaving. And so of course, I had her in tears too. Poor girl.
I can't believe how hard social events can be for us sometimes. And I can't help but wonder if I'm doing a disservice to Daniel by leaving / avoiding these kind of events. It can't be good for him to have so little exposure to this kind of stuff.
I'm feeling pretty down about the whole thing now. Stupid CP.
Subscribe to:
Posts (Atom)
