Monday, March 29, 2010

Climb on Up!

Ben has recently figured out how to climb up on his Pottery Barn chair. I couldn't believe it when he first did it, but now this is one of his favourite things to do. Check it out!

video

Wednesday, March 24, 2010

Strength in numbers

Until a month ago, I did not know one single person (in real life) that had a child with CP. Not one. Just a month later, two moms I know have had one of their twins diagnosed with CP. This kind of blows me away.

Both of these women are moms of twins that I met through our local Moms of Multiples club. Until now, I was the only mom there that had a disabled child. And now all of the sudden, there are 3 of us.

I have reached out to these moms. Because that is what I would have wanted 18 months ago when I was first told that Ben had CP. I was desperate to connect with other moms that had been there. And because I couldn't find anyone to reach out to, I reached out online. And found all of you.

So far, I have just communicated with these moms via Facebook. We have traded emails. I have met both of them a few times either at playdates or our monthly Moms Night Out (all prior to diagnosis) but I do not know either of them very well.

All of us deal with this kind of news differently. So I'm trying not to scare these moms away by emailing them constantly or calling them at home. But I really feel that I have something to offer these moms. And I'm hoping that we can all be a support for each other.

So this is my question for you. What do you remember about those early days after the diagnosis? What did you want or need?

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.

Monday, March 15, 2010

A typical PT session

(So I've been trying to do this post for a week now. I have a couple small videos of Ben's last PT session and I wanted to share them with you...but I cannot get the videos to load. So I will do this post with photos instead...it won't be as good but hopefully you'll get the main idea.)

Ben has PT twice a week - once at our local hospital and once by a private PT at home. I took some photos (and video) of his last PT session at the hospital for my own records, but also to share with all of you.

We are pretty consistent about making sure that Ben is stretched every morning so when we arrive for our PT session, we just jump right in. This week we started out "playing stickers". We've done this quite a few times, mainly because Ben loves it so much. And with a two-and-a-half-year-old, you just go with the flow!

This entails many, many plastic-sticker-like things that will stick on a mirror but will also peel right back off. He sits on a low bench so that his feet are firmly planted on the floor. The PT has his reach all over for the next sticker (over his head, on the floor, behind his back) and then he puts the sticker on the mirror...usually high up so he learns to stand and sit independently. He does awesome at it! And loves to tell us what each sticker is (there are dinosaurs, snowmen, butterflies, and lots of animals).


After this, he decided he wanted to walk. We used to practice using his walker, but we don't do that now since he's so good at it and gets to much practice at home. Instead, we decided that we would try "cruising along the wall"...which we've only ever tried once with no success. Well...this time...SUCCESS! Yes, he needed to be helped along and "spotted" but he did great. He walked all the way along the wall to the basketball net (which we moved to next).



Ben LOVES basketball...I don't think there is another kid out there that likes basketball as much as Ben does. Basketball almost always plays a part in his PT sessions at the hospital since they have a basketball hoop. In this part of the session, he's actually standing on his own in the corner (he's very good at this and we do it at home some). He then has to shoot the basketball. This takes a lot of balance and he does great. And he loves it as you can see.

That was about it for that session. He's usually a little worn out, but he's still full of motivation and energy so he actually walks all the way back to the car in his walker when we're done now. (I don't let him walk TO the session since I don't want him too tired for the session.)
And just because I think my boys are so cute, here are a couple more recent photos.

Here are Daniel and Ben in Daniel's chair. Ben was sitting in it first, but Daniel always insists on climbing in behind him.

And here they are enjoying their milk first thing in the morning. (Daniel left, Ben right).


Thursday, March 4, 2010

Best. Paediatrician Appointment. Ever.

The boys had an appointment with their paediatrician this morning. And I was dreading it. Although their pedi is very thorough, he is slightly over-concerned and this drives me a little bit crazy. There have been times where their appointments have taken up to 2 hours!

Here is a recap of their appointments (boys are now 29 months old):
  • Daniel completely cooperated and for the first time was weighed on the adult scale and stood for his height (instead of lying down for his length).
  • Daniel now weighs 26 lbs! And is 89 cm's tall. 26 lbs is just amazing for Daniel. He jumped from the 3rd to the 10th percentile in weight! The pedi has always been concerned about his weight but he was thrilled with him today.
  • Ben was a rockstar and "walked" in on his own in his walker. The pedi had never seen him in his walker and was totally impressed.
  • Both boys were total superstars and cooperative during their examinations.
  • Ben now weighs 28.6 lbs and is 89 cm's long. Needless to say, Ben is still weighed on the baby scale and lays down for a length measurement.
  • I talked to the pedi about Ben doing hippotherapy starting in May and Ben's potential allergy to horses. We now have a plan to deal with this so hopefully it'll all be fine.

I think those are the main highlights of the trip. I was so proud of my boys!

Tuesday, March 2, 2010

Cary-ology

After reading Stacie's "Stacie-ology", I decided to do my own.

Hey you! Yes, you and you and you and, especially you! Any of you reading this. You're tagged. After you've gotten to learn more about me than you ever wanted to know, take a turn and play the game. It's fun! Let others know a little more about yourself, repost this as your name followed by "ology."

FOODOLOGY:
What is your salad dressing of choice? I make the best "Raspberry Vinegrette Dressing" that I just love.
What is your favorite sit-down restaurant? This is a toughy. I'll say The Keg...but only because that's the first one to come to mind.
What is your favorite fast food restaurant? Not really into Fast Food. I'll say McDonald's because the fries are so damn good.
What food could you eat every day for two weeks and not get sick of? Pizza
What are your pizza toppings of choice? Pepperoni, green peppers and mushrooms
How many televisions are in your house? Just one.
What color cell phone do you have? Red (if you knew me in real life, you'd say "of course it's red")

VUBIOLOGY:
Are you right-handed or left-handed? Right.
Have you ever had anything removed from your body? just my 2 kids via c-section, does that count?
What is the last heavy item you lifted? two 25 lb + toddlers at the same time (same answer as Stacie except mine weigh less than hers)
Have you ever been knocked unconscious? Nope.
Have you ever fainted? yes

BULLCRAPOLOGY:
If it were possible, would you want to know the day you were going to die? Absolutely not. Too weird.
If you could change your name, what would you change it to? I think I'd love to be a Katherine...Kate for short.
How many pairs of flip flops do you own? Too many to count. LOVE flip flops. Can't wait for summer and flip flop season.
Last person you talked to? My niece Lucy who's here to help me out this week.

FAVORITOLOGY:
Season? Fall. Hands down. Cooler days, beautiful leaves, football season, Thanksgiving. What's not to like?
Holiday? Christmas but Thanksgiving is pretty close behind (awesome holiday with hardly any work)
Day of the week? Sunday
Month? September - again, the whole fall thing
Color? red
Drink? Diet Pepsi (with a lemon wedge)
Alcoholic? Well, no I'm not an alcholic but I do love a glass of red wine...probably a Cab but Malbec is a close second right now.

CURRENTOLOGY:
Missing someone? Yes, my sister who lives too freakin' far away...like 300o miles away.
What are you listening to? The clock ticking and the boys' white sound machine
What are you watching? Nada
Worrying about? Nothing really...just thinking about what we're going to do tomorrow
What's the last movie you saw? Avatar
Do you smile often? I think so.
If you could change your eye color what would it be? Green
What's on your wish list for your birthday? Just hoping for a special day with family (it's this weekend actually so we'll see)
Can you do a chin-up? I doubt it.
Does the future make you more nervous or excited? Like Stacie, I think both.
Have you been in a car wreck? No
Have you caused a car wreck? No
Do you have an accent? Doesn't everyone? So yes, I'm sure I have a Canadian accent. My husband even insists that I have a Maritimer accent.
Last time you cried? Not sure exactly when the last time was...but definitely within the last few weeks. I still cry about Ben on occasion.
Plans tonight? It's almost 10:30pm here so my evening is done. Picked up my niece to spend a few days with us and now I'm just "blogging".
Have you ever felt like you hit rock bottom? Yes - about 18 months ago. Right before we got Ben's diagnosis.
Name three things you bought yesterday? Milk, cheese, mushrooms (we got groceries yesterday)
Have you met someone who has changed your life? Yes
For the better or worse? Better.
How did you bring in the New Year? At home with my hubby. Although I'm pretty sure we were in bed before midnight.
Would you go back in time if you were given the chance? No. Absolutely not.
What songs do you sing in the shower? I don't sing in the shower.
Have you held hands with someone today? Yep...both kiddos.
Who was the last person you took a picture of? My husband with the boys
Are most of the friends in your life new or old? Both. Definite mixture for me...but probably mostly new.
Do you like pulpy orange juice? YUCK!
Last time you ate peanut butter and jelly? Can't remember. At least 25 years ago.
What were you doing at 12 a.m. last night? Trying to fall asleep
What was the first thing you thought of when you woke up? "Do I have time for a shower this morning?"