Well. The first day of school is now complete. Thank the lord, because I don't think I can handle any more of this first-day-of-school-with-twins-and-one-with-CP stress. Seriously. Enough already.
I was going about enjoying my morning on my own. Then the phone rang. It was 11:30 and already their teacher was calling. She assured me that both boys were doing well, but that Ben was complaining of being tired.
Apparently, they did more walking than normal this morning. They did a tour of the school, went to music class and of course, went outside for recess. It was now lunchtime and she was wondering if it was OK for Ben to use his wheelchair when they went back outside to play.
(Some background: The plan is for Ben to use his walker for the most part. It's to be used for all outdoor time as well as for longer distances inside the school. His quad canes are also there for use for shorter distances like to the washroom, water fountain or library, which are all about 20 feet from the classroom. His wheelchair is also at the school. However, it is only to be used for fire drills and field trips.)
Well. To be honest, I didn't know what to do. As Ben's mom, I know that he tires much more easily than other kids his age. I also know that he often complains that he is tired, but that if motivated can walk A LOT more than he lets on.
I was really conflicted. But I held my ground. I really didn't want to set a precedent on his first day at school that it was OK to use the wheelchair. I want him to WALK at school. I want him to push his limits just a little bit each day. I want his endurance to improve.
But, of course, I then went on to stress for the next 2 hours that I had made the wrong decision. 1:30 couldn't get here fast enough!
Turns out, I made the right choice. Ben's aide admitted that he was playing them and they almost fell for it! He did great with his walker outside after lunch and they are starting to see what he can do.
I am so glad I held my ground. Phew. First hurdle over with...I wonder how many more of these "decisions" I will have to make this year...
Showing posts with label independence. Show all posts
Showing posts with label independence. Show all posts
Friday, September 7, 2012
Friday, June 22, 2012
5 Months Post-Op (cross-post)
On Monday, we will be five months post-op. WOW. Amazing. I keep thinking back to a year ago when we were just starting to explore the idea of Ben having a rhizotomy and here we are now, already 5 months post-op. The surgery now is just a memory...
Ben is continuing to slowly improve. He is getting stronger and his endurance is vastly improved compared to when we arrived home in early March. Compared to before surgery, here are some changes that we've seen:
1. Endurance - Before surgery, Ben could hardly walk in his walker or with his canes for more than 5 minutes. His muscles were so tight that it was just too much effort to do more than that. His endurance had been much better but as his muscles got tighter and tighter, his endurance really suffered. In May, we went to Florida for a family vacation and I was thrilled with his walking endurance. He was able to walk the entire Orlando airport with no breaks or trips in the stroller. This is the first time he has been able to walk so far on his own. He still tires much more easily than other children his age as it is still a lot of work for him to move his body, but we are thrilled with how far this has come.
2. Standing - Before surgery, Ben could maybe stand independently for 2 to 3 seconds and this was not at all consistent. Lately, he's been able to stand on his own for up to 30 seconds pretty much any time.
3. Gait - His gait is a million times better than before surgery. As you have all seen, before he was high up on his toes and now his feet are flat. And he even gets his heels to hit first about 50% of the time.
4. Mobility - Before surgery, Ben mostly crawled or used his wheelchair. He was able to use a walker and quad canes but as the tightness got worse, his endurance with these decreased. Now, he hardly ever crawls. He uses his walker all the time in the house and out in public. We had a ramp installed in our garage and now he can get to the van independently, He still needs help to climb up in, but as he gets taller, he'll be able to get into the van all on his own. He is getting very good at using his quad canes but these are slow to use and they are really only used as therapy. We are now working on learning how to use forearm crutches! This is a huge deal. I envision that these will become his primary method of getting around. They aren't the perfect solution as they do result in more of a crouched gait than that quad canes or his walker, but they are much better on uneven surfaces and stairs. I do expect that it may take up to 6 months to learn to use the forearm crutches well but I'm hopeful that by next summer, he'll be really functional with them.
5. Steps - Now this is the question you are all dying to ask...is he walking on his own yet? Well. The simple answer is no. His standing and weight-shifting need to improve alot before he'll be ready to do any real independent walking, but that said, he is capable of taking a few steps on his own! And his confidence is growing...so hopefully we'll see some great improvements in this area in the next 6 months or so.
6. Strength - Most of his PT sessions with Connie (private PT) have concentrated on strengthening. Now that the spasticity is gone, it is now possible to strengthen his leg muscles that were so weak before. Another great way to work on strengthening (especially quads) is biking. And after much trial and error, we finally found a bike that works for Ben. It still needs a few adjustments (as it is a bit tippy) but so far, it is working out great.
Ben is continuing to slowly improve. He is getting stronger and his endurance is vastly improved compared to when we arrived home in early March. Compared to before surgery, here are some changes that we've seen:
1. Endurance - Before surgery, Ben could hardly walk in his walker or with his canes for more than 5 minutes. His muscles were so tight that it was just too much effort to do more than that. His endurance had been much better but as his muscles got tighter and tighter, his endurance really suffered. In May, we went to Florida for a family vacation and I was thrilled with his walking endurance. He was able to walk the entire Orlando airport with no breaks or trips in the stroller. This is the first time he has been able to walk so far on his own. He still tires much more easily than other children his age as it is still a lot of work for him to move his body, but we are thrilled with how far this has come.
2. Standing - Before surgery, Ben could maybe stand independently for 2 to 3 seconds and this was not at all consistent. Lately, he's been able to stand on his own for up to 30 seconds pretty much any time.
3. Gait - His gait is a million times better than before surgery. As you have all seen, before he was high up on his toes and now his feet are flat. And he even gets his heels to hit first about 50% of the time.
4. Mobility - Before surgery, Ben mostly crawled or used his wheelchair. He was able to use a walker and quad canes but as the tightness got worse, his endurance with these decreased. Now, he hardly ever crawls. He uses his walker all the time in the house and out in public. We had a ramp installed in our garage and now he can get to the van independently, He still needs help to climb up in, but as he gets taller, he'll be able to get into the van all on his own. He is getting very good at using his quad canes but these are slow to use and they are really only used as therapy. We are now working on learning how to use forearm crutches! This is a huge deal. I envision that these will become his primary method of getting around. They aren't the perfect solution as they do result in more of a crouched gait than that quad canes or his walker, but they are much better on uneven surfaces and stairs. I do expect that it may take up to 6 months to learn to use the forearm crutches well but I'm hopeful that by next summer, he'll be really functional with them.
5. Steps - Now this is the question you are all dying to ask...is he walking on his own yet? Well. The simple answer is no. His standing and weight-shifting need to improve alot before he'll be ready to do any real independent walking, but that said, he is capable of taking a few steps on his own! And his confidence is growing...so hopefully we'll see some great improvements in this area in the next 6 months or so.
6. Strength - Most of his PT sessions with Connie (private PT) have concentrated on strengthening. Now that the spasticity is gone, it is now possible to strengthen his leg muscles that were so weak before. Another great way to work on strengthening (especially quads) is biking. And after much trial and error, we finally found a bike that works for Ben. It still needs a few adjustments (as it is a bit tippy) but so far, it is working out great.
Tuesday, April 24, 2012
Independence!
Our main goal, now that we're home from Montreal, has been all about independence. Before the surgery, walking with the walker was difficult for Ben and he couldn't last for long...but now? Well, now, he does great and can go for longer and longer periods.
At home now, we expect Ben to get everywhere on his own. And not crawling, but walking. Even though our house is multi-level, we mainly hang out on the main floor that is pretty much completely accessible for him with his walker. Not only is he expected to walk everywhere, but we also want him to do all transfers too. Sometimes we do have to help him, but he needs to put some effort in. We don't just carry him anymore....well, except for to and from the car...until NOW.
This week, we finally had a ramp installed in our garage. Before there were 4 steps down to get from the house to the garage. They were very steep steps with no railing so we had to carry him to the van. And then of course come back to carry his walker to the van.
Not anymore! The ramp is pretty much finished and Ben got to try it out tonight. So from now on, he can be independent to and from the van and will just need a bit of help to climb up into his carseat.
Check out the video!
At home now, we expect Ben to get everywhere on his own. And not crawling, but walking. Even though our house is multi-level, we mainly hang out on the main floor that is pretty much completely accessible for him with his walker. Not only is he expected to walk everywhere, but we also want him to do all transfers too. Sometimes we do have to help him, but he needs to put some effort in. We don't just carry him anymore....well, except for to and from the car...until NOW.
This week, we finally had a ramp installed in our garage. Before there were 4 steps down to get from the house to the garage. They were very steep steps with no railing so we had to carry him to the van. And then of course come back to carry his walker to the van.
Not anymore! The ramp is pretty much finished and Ben got to try it out tonight. So from now on, he can be independent to and from the van and will just need a bit of help to climb up into his carseat.
Check out the video!
Wednesday, April 11, 2012
A long overdue update! (cross-post)
We have now been home for over a month! It was a month on Monday that we arrived home....does time ever fly when you're not hanging out in a hospital!
People have been bugging me to post a blog update to let you all know how Ben is progressing now that he's at home. So here we go!
Progress has definitely slowed since we've been home, but that was expected. That doesn't mean that progress isn't being made though...it's just a bit harder to see. Instead I try to focus on how different life is now than it was on January 24th (the day before surgery).
Ben now walks with his walker almost all the time...even at home. Before the surgery, Ben mainly crawled at home, walked very little with is walker, and used his wheelchair in public places. Now...well, Ben's wheelchair is basically gathering dust in our garage. It will definitely still be needed (i.e. for walking back and forth to kindergarten in the fall) but is not needed near as much as before surgery.
Our focus at home is to have Ben be as independent as possible. Sometimes it is just easier to carry him, but we are really trying hard not to do that. We try to make him do all transfers (i.e. in and out of his tripp trapp chair at the table) and walk as much as possible. We even make him walk up and down the stairs (with our help, of course). We are going to have a ramp built in our garage (which will unfortunately take up one of the bays) but expect that once that's built, Ben will be able to take himself out to the van (and hopefully get into the van and even into his carseat) with no help.
Here's a great pic of a typical afternoon at our house...Daniel in (what's supposed to be Ben's) bike and Ben following with his walker.
Ben has physio 3 times each week now and OT once. Luckily, I have Shauna (our babysitter) to help out with appointments and we only have to go to the hospital just once each week as we have Connie (private physio) come to the house twice. OT and PT at the hospital are back-to-back on Tuesday mornings.
I've also signed Ben up for Music Therapy (thanks Danie for the information!)....but we just call it music lessons. He's only gone once and loved it. I'll post more details about it once I know more.
The main focus of Ben's PT sessions (and even OT) is strengthening. I still have a goal for him of independent walking (of some kind) but we aren't forcing that issue yet. He's just not strong enough. There is no point in making him try and try and just fail at it. I am hoping that by summer we will have at least a few independent steps though.
Basically, Ben just moves differently than before. Everything he does is done differently now that he doesn't have the spasticity (i.e. tightness) to help or hinder him (yes...sometimes it did help!).
That's about it for Ben's update....so here are some photos of what we've been up to in the month we've been home.
In mid-March, we had some VERY warm weather...like July-weather. So here are some great shots of a water fight on our back deck.
(Flat feet!)
(Very happy Ben!)
(Funny Daniel...check the snowman in the background!)
(Happy Daniel!)
We had a great Easter weekend with lots of family time, an Easter Egg hunt, and lots of 4-wheeler rides with Grampie.
Ben playing Angry Birds with cousin Lucy.
Daniel with Uncle Jeff
My boys on Easter Morning.
Some quality brother time!
Grampie's 4-wheeler has a seat in the back that's big enough for both of them!
They just love their Grampie so much!
I even got to go out with the girls one night...this drink is what I needed on many nights at the hospital!
Sunday, March 21, 2010
A pretty huge realization
Lately my husband and I have been focussing on making our house and yard as accessible as possible for Ben. We plan to put a ramp to the side door so that Ben can go in and out independently with his walker. We are going to redo our deck (which right now has a step up in the middle of it) so it too is accessible to Ben. We plan to get rid of the step (or add a small ramp) as well as add a ramp off of the deck to the backyard. We also need to do some work on our backyard so it doesn't slope so much. My vision is that Ben will be completely independent to go in and out as well as play outside on his own.
So needless to say, we've been having alot of discussions about Ben, his abilities, and how to help Ben be as independent as he can be. It's rather all-consuming.
And then the other night when we were out for dinner on our own, we started talking about retirement. When we think that might be and what we might do once my husband no longer has to work for a living. The first thing we knew for sure is that we will not be staying in Canada for the winters. We'll probably buy a place in California or some other warm place and winter there. And we'll likely sell our house that we live in now and build a smaller place on the ocean (just 15 minutes away) for summers.
So as we were having this conversation about the future, it dawned on me.
Ben will not live with us forever and his disability will not affect our everyday lives forever. His disability will affect HIM for the rest of HIS life, but it will not affect us on a daily-basis like it does now.
WOW.
It was a pretty huge thought. That kinda threw me for a loop.
And don't take me wrong. This doesn't make me happy. No. How could it? It was just something that I hadn't thought of before.
Ben's abilities are such that there is no reason why he won't be able to live independently. Ben will pretty much be able to do whatever he wants (well, except play in the NBA). So no, he won't live with us forever. He'll likely go off to university, get an apartment, get a job and probably even marry and have children.
It's kind of changed the way I look at things. It's given me a bit of perspective. Like, this CP thing happened to BEN. And not so much to ME.
I'm not really sure what this all means...maybe it doesn't really mean anything. I guess that's why I'm blogging about it. But I'll let you know if I have any further insights.
So needless to say, we've been having alot of discussions about Ben, his abilities, and how to help Ben be as independent as he can be. It's rather all-consuming.
And then the other night when we were out for dinner on our own, we started talking about retirement. When we think that might be and what we might do once my husband no longer has to work for a living. The first thing we knew for sure is that we will not be staying in Canada for the winters. We'll probably buy a place in California or some other warm place and winter there. And we'll likely sell our house that we live in now and build a smaller place on the ocean (just 15 minutes away) for summers.
So as we were having this conversation about the future, it dawned on me.
Ben will not live with us forever and his disability will not affect our everyday lives forever. His disability will affect HIM for the rest of HIS life, but it will not affect us on a daily-basis like it does now.
WOW.
It was a pretty huge thought. That kinda threw me for a loop.
And don't take me wrong. This doesn't make me happy. No. How could it? It was just something that I hadn't thought of before.
Ben's abilities are such that there is no reason why he won't be able to live independently. Ben will pretty much be able to do whatever he wants (well, except play in the NBA). So no, he won't live with us forever. He'll likely go off to university, get an apartment, get a job and probably even marry and have children.
It's kind of changed the way I look at things. It's given me a bit of perspective. Like, this CP thing happened to BEN. And not so much to ME.
I'm not really sure what this all means...maybe it doesn't really mean anything. I guess that's why I'm blogging about it. But I'll let you know if I have any further insights.
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