Video - ONE CANE!!!!!

Here's a video of Ben "somewhat" walking with one cane. I am still in shock that he is at all ready to do this! He's a bit cranky in this video, but this video WAS taken at the end of a 2-hour Conductive Education session so that's to be expected.

I have to say that I LOVE Conductive Education. They just push him so hard. I never think he's ready to move to the next step, but they just keep on pushing. And he just keeps on working and progressing.

One cane

We're back in Halifax for another week of Conductive Education with Ben's lovely classmate, "Sarah".

Well...as I posted a while back, Ben can now walk on his own with 2 quad canes. He's not super at it, but can do it without any help...and can even get down on his own.

This session of Conductive Ed is different that what we've previously done as the Conductive Educator has an assistant now. So instead of us moms staying and helping out with the session, we actually left Ben and Sarah there for their 2 hour "class". What a nice break!

We arrived back with about 10 minutes left in the class...and I just couldn't believe my eyes...BEN WAS WALKING WITH ONLY ONE CANE!!!! Yes, he was slow. And yes, he needed lots of help...but he WAS doing it.

So...I just need to remember my camera tomorrow and hopefully I'll catch it on video for you all to see.

Progress with canes

A few weeks back I finally got around to buying Ben some canes of his own...of course, he wanted red ones, just like "Sarah", his CE classmate.

Up til now, he used canes just at CE and they were tripod canes...not near as steady as Sarah's quad canes. It has taken a few weeks, but Ben is finally convinced that he CAN walk on his own with the canes. I knew he could, I just had to convince him.

So...without further ado...check out this video of Ben walking with his canes ALL BY HIMSELF!

Updates

1. A few weeks backs, I posted about our struggle with spasticity management. At that time, I really thought we were heading towards surgery sooner than later. Well, a few days after that post, we had a conference call with Ben's physiatrist and one of his many PT's. It was a good call. After much discussion, the real conclusion that we came to, is that I want to gather as many opinions about Ben as I can so that we can make the best decisions for him. I really want to go to Gillette's Children's and have a gait study done and hear about what they think would be best for Ben. But I think that's about a year away. Ben is not always super cooperative, and I think in order to really do this, he needs to be a bit older. So for now, we stick with the botox and serial casting. Which leads to update #2...

2. I also told you guys that Ben was going for botox under general anesthetic a few weeks back. I was nervous about him being under general...but it all went really well. My kid continues to surprise me when it comes to doctors, hospitals, etc. He was an angel. He went off to the operating room on his own with me (which was very hard on me by the way) and did wonderfully. Didn't fight the mask at all apparently. When we saw him about a half hour later, he was awake and enjoying a lime popsicle. After about 45 minutes, we got him dressed and took him home. He is already standing and walking better. I can't believe it actually. And we're only 8 days in.

3. So we'll do another couple weeks of casts starting on Wednesday of this week to make sure to stretch those calf muscles as much as we can while the botox is effective. Luckily, he loves having "red boots" and its really not an issue for us at all at this point.

4. We're going to be doing another week of Conductive Education the week of the 14th of March. Again, with cute little Sarah. I'm really excited about it. Ben is doing so well with standing at home that I really hope we can make some real progress when we're there...and I hope to see him walking independently with canes this time too.

5. We're anxiously awaiting the start of Spring here. We've been hit with so much snow this winter that we can barely see out our front windows. We just got another foot of the white stuff last night. Now when I'm in my driveway, I can't see over the snowbanks into the neighbour's yard. If we're lucky, we might see the grass by July!

6. In preparation for Spring / Summer, we've signed Ben back up for Therapeutic Riding again. We actually participated in a fundraising event for the riding club this afternoon...bagging groceries at the local grocery store. People were so kind and generous once they figured out what we were raising money for. And I've signed Daniel up to play soccer. It's time for Daniel to have something that's just his. Ben gets to do so much and Daniel usually either stays home or goes to watch. So he gets his own special thing this summer.

7. And we're counting down to our Florida vacation. We're going back to the same resort as last year in Fort Myers. We loved it and it was perfect for the boys so we're heading back there. It's still over 2 months away though. My husband is a tax accountant and the filing deadline here in Canada isn't until the 30th of April so we have to wait til May.

My Conductive Education Guest Post

Janet over at Painting for Hailey is doing a series on Conductive Education. I am her first guest poster...so go over and check it out when you get a chance.

Conductive Education - I'm a believer...

So. We just finished our 3rd session of Conductive Education ("CE"). I am a total believer now. Total believer. Ben was simply amazing. He did so many new things and just amazed me everyday. And I can't wait til we go again in March...this time hopefully for 2 weeks.

I am going to do a guest post for Janet at Painting for Hailey explaining more about CE, the centre that we use and other details...but for now I wanted to at least brag about how awesome Ben is!

As I said, this was our 3rd session, I blogged about our first session here. I blogged about our 2nd session here and here.

For the 2nd time, we did a session with a classmate named "Sarah". It is truly a great experience for both Ben and ME to be around another child (and Mom) with CP.

And this time...instead of staying in a hotel, we stayed with Sarah and her Mom at their vacation house just an hour outside of Halifax (where the CE centre is). Sarah's mom had extended the invitation for us to stay with them when we met them at the last session and I was a bit nervous, but decided to go for it. It would save us ALOT of money plus it would be great for Ben and maybe even great for me.

It turned out so much better than I could have imagined. Sarah and Ben are great friends and got to know each other even better. Sarah's mom and I completely connected. We have a TON in common...besides the fact that we both have a child with CP, we both have lived in multiple countries, love to travel and....best of all....have a mutual passion for really good red wine.

We spent every night sharing a bottle of wine and stories...either about our life or about our kids. It was awesome.

So...back to CE. Here is a photo of Ben practing walking with canes. He continues to improve with this and can almost do it independently...well, he can do it independently for a few steps but then loses his balance.


Here are Ben and Sarah working on balance by throwing beanbags while trying to keep their feet flat. Ben loved it!

And here's my favourite photo from the week. Here you can see Ben standing ON HIS OWN!!!! It is only for a second or two, but this simply amazes me.

So yeah...I'm a believer. A believer in CE and we can't wait to go back. March can't come soon enough.

Christmas is once again upon us

Hi everyone. I hope you are all managing to enjoy these last days leading up to Christmas. I haven't been blogging at all (although I am reading your blogs) as I've just been so busy. Above is our family Christmas photo (and more follow below) done by Megan McKinley Photography.

Since we got back from our week in Halifax doing Conductive Education, we've been busy getting ready for Christmas, going to preschool, PT appointments, etc. There is more botox in Ben's future...we're currently on the waiting list so hopefully we'll get that done sometime in January.

We're going to do another week of Conductive Ed during the 1st week of January. Again, it will be with Sarah, Ben's classmate from the last session.

We're also going to be heading to Ontario for a weekend in January for my husband's grandmother's 90th birthday party. We decided that the best gift we could give her would be to make the trip with the boys for her big party.

I feel like Ben is making good progress these days. He uses his walker constantly. Even inside the house now. We even borrowed a lighter weight walker from the hospital to use over the holidays as Ben's "inside walker" so we can take it with us when we visit family and friends over the holidays. He is getting better and better using it. He "runs" and "jumps" and even falls backwards on purpose just for fun.

We're working on giving up the afternoon nap. We're trying a 3-day-a-week nap schedule. So it's been interesting around here. Lots of crankiness at suppertime on those days when they don't nap. But they are going down at nighttime so much better and sleeping later in the morning which is great.

Christmas will be a busy and fun time for us. My sister will be home from Calgary for about 9 days which will be wonderful. The boys seem to think that she's always on an airplane when she's not here with us and they're getting excited to see her. There will be lots of family events to attend. A huge one on Christmas Eve and smaller ones on Christmas Day. We'll go and stay a night with my brother's family. And we've decided to host a "New Year's Day Recovery Party" this year. Hopefully it's a success and will be the first one of many.

Christmas feels very magical this year. The boys understand it and love all the decorations and lights. It's amazing seeing Christmas through their eyes.

I probably won't post much over the holidays but you never know. In case I don't post again before Christmas, Merry Christmas everyone! Enjoy your families. Enjoy your kids...they'll only be this age once and experience Christmas this way once.

I'm not quite sure what's so funny here...

Showing off the gingerbread men they made at preschool

Daniel helping Ben with his tie

Cuddles which quickly turn into wresting matches these days.

And my favourite...this boy is so amazing!

I just had to do a post so I could show you this picture of Ben and "Sarah"! This is from this morning's Conductive Education session. They are practicing independent standing and ended up holding hands. How cute is that?

We are having just a fantastic week here. Doing Conductive Ed with a classmate is COMPLETELY different than doing it ALONE. Much more fun for Ben...and much easier on me too.

Sarah's mom and I seem very similar and both want our kids to do more Conductive Education with each other whenever possible so we're trying to coordinate schedules for the winter and spring sessions.

So there is definitely some more CE in our future!

Progress...and a friend "just like me"

Lately, I've been feeling like Ben's been making ZERO progress....I feel like all we're doing is trying to manage his spasticity for the last 6 months and that he's made absolutely NO GAINS in the gross motor skills area. I have been so discouraged. I thought by now that we'd be seeing progress in independent standing and maybe even and independent step or two. But nope. Nada.

Until today.

Until we went back for another week of Conductive Education in Halifax with the March of Dimes Canada.

Until he went right for the new set of canes they had ready for him and started walking around the gym (with a little bit of help of course).

I couldn't believe it. His core strength has definitely improved since we were here 4 months ago. And he's definitely gotten over the fear of falling.

I was beyond thrilled.

And you know what else? He even has a classmate this time. Let's call her "Sarah". She's 4 and has the exact same diagnosis as Ben...Spastic Diplegia CP.

And she moves and sits and stands...JUST LIKE BEN.

You should have seen Ben's face when she walked into the gym this morning in her walker. He was all grins from ear to ear.

I couldn't stop staring at her. She moves just like Ben. I posted this picture on Facebook tonight and someone commented that she sits just like Ben. It was amazing. Just amazing.

And Ben...well this comment to his Grammie pretty much sums it up "she has a walker JUST LIKE ME Grammie!!".

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!

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!

Back

We just got back this afternoon from a whirlwind, 8-day trip to Ontario that included 2 flights, 4 hotel rooms, 1 rental van, countless hours in said van, too many meals in restaurants, and many, many hours spent with friends and family. I'm exhausted. And way behind. On blogging, on commenting, on voicemails and on emails.

Three good things have come about though that need to be followed up on ASAP:

1. Conductive Education in Halifax has another child enrolled with similar abilities as Ben that is interested in doing classes with us. That's exciting...just hope we can manage to coordinate our schedules!

2. Ben got his Botox appointment (for his hamstrings). It's on Aug 9th. I just hope they haven't given the appointement away because we haven't called back to confirm.

3. A good friend of mine who currently lives in Vietnam (She's South African and we originally met in 2001 when we both lived in Bermuda) is actually just a 2 1/2 hour drive away! I so hope we can manage to meet up while she's so close.

It's a long weekend here in Canada...so we have two whole days left to recover.
And to my bloggy friends. I AM reading your blogs...as much as I can anyways. Sorry for the lack of commenting, but I will be leaving comments shortly!

Family pic in front of Niagara Falls

Another family pic, this time enjoying the waves of Lake Huron

My take on Conductive Education

Part of the reason that I've been mostly MIA for the last month or so is that we are super, crazy busy. As part of the craziness that is our Summer 2010, we are currently in Halifax, Nova Scotia for the week so Ben can have a week of Conductive Education (CE). CE is not offered where we live, so we drove 2.5 hours away to get it. This also means that we had to rent an apartment and stay for 5 nights.

I don't have the energy for a full-blown post on CE, but suffice to say that after 4 days of sessions (between 1.5 and 2.5 hours in length), I definitely feel that Ben has made progress. I don't feel that what he's been doing in his sessions is all that much different from a physio session, but I do think the intense (i.e. longer and frequent) sessions as well as a change of scenery (i.e. new place, new person, new tasks / toys) has made some difference.

Because the Halifax CE group is pretty new and Halifax is a fairly small centre, Ben did not participate in a camp or class. Instead he had one-on-one sessions with the Conductive Educator. I think he would really benefit from a class / camp. He is really motivated by other kids and I think that would be a huge plus for him. The next closest CE Centre is in Toronto and I am considering taking him there next summer to participate in a camp. It's not that big of a deal for us, since my husband's family is in that area and we would just tack another week on to our summer visit there.

Some improvements that I "think" I see:

1. Very much improved at pulling to stand. Ben has always pulled to stand by using his arms and upper body, instead of putting one foot flat and then rising onto that foot. He now puts his foot flat almost spontaneously and only needs a little assistance / prodding to get into standing. We will certainly be working on this more at home since he is doing so well with it.

2. Learned to use his hands more to get down to the floor (or even fall). Ben does not have the reflexes that typically-developing children have. Part of this week's work focused on having him "reach his hands to the floor" when getting down.

3. Climbing up ladders! We worked on climbing up and down ladders quite a bit. I'm not sure of the all of the benefits of this, but he did great at it! (I've loaded a video of him climbing below.)

4. Not so much on his toes when walking. I don't know why this is, but all of the sudden, he's walking WAY better in his walker. He's still on his toes, but his heels come down farther and more often.

5. Improved sitting. Sitting on his bum is still a challenge for Ben. He can do it, but it takes alot of effort and he still can't get into the position on his own. The w-sits very well and that's his preferred way to sit. This week we spent a lot of time working on "long sitting" - sitting with his legs straight out in front of him. To keep him occupied while sitting this way, he would blow bubbles. He could sit like this for at least 10 minutes.

6. Walking with canes. Ben tried walking with canes for the very first time today. He was very reluctant to try it but we managed to convince him eventually. He did really great. (See video below).

I think my personal feelings on CE are that it's not all that much different from Physio. I would really like to get him into a CE camp with kids his own age. I think the real reason that it works is due to the intensity of the sessions.

For more info on CE in Canada, check out the March of Dimes.

Video 1: Walking with Canes!

Video 2: Climbing!

Random

Since I can't seem to gather my thoughts into one subject for a post, I thought I'd just do a bullet list of things that are going on with us. Here goes:

Ben had a great morning yesterday. He had PT and OT back-to-back which is very unusual since he only sees the OT every 2 to 3 months. We hadn't had a PT session in about a month due to various illnesses and scheduling conflicts so it had been awhile since we'd been to the hospital. He did really well at PT. He practiced going from sitting (on a bench) to standing and back to sitting for awhile. We then practiced STANDING ON HIS OWN! He was able to do it for 2 to 3 seconds. It was fantastic and he loved it. We left PT to head to OT. It's quite a walk through the hospital but Ben walked the whole way in his walker. OT went really well as well. He was able to do all the tasks presented to him and blew the OT away with his knowledge of numbers and letters. She didn't even bother to give us any homework. Ben then walked all the way from OT back to the car...another long walk. He did great. When I put him in his car seat, he looked at me and said "really fun Mommy". Too cute.

We've pretty much decided it's time for us to get a mini-van. I fought it for awhile but am now really ready for it. And excited about it. We've actually got one for the weekend to try out and I'm lovin' it! It's awesome. I can take both boys out to the van, open the sliding door, help Daniel in with one hand while holding onto Ben, put Ben in his carseat and then put Daniel in his carseat. With our CR-V, I would have to tell Daniel to hold onto my leg while I put Ben in and then put Daniel in...all the while worrying that Daniel will run off. No more worrying! Plus, there's tons of space for strollers, walkers, bikes, etc.

The end of tax season is only 2 weeks away! That means that the part-time job that I don't like will soon be over. As you may recall, I took on 2 part-time jobs back in February. Doing tax returns at my husband's office and being a Weight Watchers Leader. I really enjoy working for Weight Watchers and running meetings, but I'm not enjoying the return to the accounting world. Thankfully, that is almost over and I'll have more time for the boys. Yeah!

We're very strongly considering trying out Conductive Education for Ben this summer. The closest CE centre is 2 1/2 hours away but I think we're ready for it. We're going down in late May for an assessment. And then we'll make our decision. I'm pretty sure we'll try it out sometime this summer. I'm just not sure of the timing or how much we'll do yet, but I'll be sure to update you as we move along in this process. If you want to read more about Conductive Education, check out this post by Renee at Massagermommy.

Happy Saturday everyone!

My boys love their sunglasses. Here they are "preparing" for bed.