About the Small Stuff

Shriner's - Day 2 (cross-post)

2012-02-01T23:13:00.000-04:00

We are officially 1 week post-op. I can't believe it. In some ways, it feels like it's been months since I saw them take away my screaming child and yet in others, it feels like yesterday. I'm so glad that it's not a week ago...and we were hanging out in the recovery room.

Today was an up and down day. Some parts were great and others...not so much.

First off though, here are a few pics from our walk around the hospital last night before bedtime.

Me and Ben...after he kicked my butt at Snakes & Ladders:

We had to go say good-night to the fish at the clinic downstairs. Here's Ben telling me to be quiet...they're sleeping:

We also had to say goodnight to the albino frogs. Ben couldn't see them as they were too high up so I took a picture for him. Kinda creepy, eh?

So, now back to today.

We had a better sleep last night. Ben slept well and I slept considerably better than the night before. I decided to try sleeping in the converted chair the opposite way around and it was somewhat better. Plus, I was just so freakin' tired.

We woke around 7 and I thought we had LOTS of time before my meeting at 8:30. Well. We would have. Except that Shauna and Daniel decided to FaceTime us around 7:45. It was great though. The boys loved it again and Ben got to see Shauna for the first time in nearly 2 weeks. They used the iPad so show us the snow outside as well to show us the new train set that Daniel had set up.

So yeah. This put us a bit behind schedule. I left Ben with a student nurse (well-equipped with board games and books) to attend a meeting with all Ben's "people". There is a lot, you know. His PT, OT, nurse, dietician, social worker and child life specialist...plus me. Basically, we talked about Ben's schedule, his allergies, and other logistical things. I did manage to complain (once again) about my bed. Well...the squeaky wheel gets the grease. Or in this case, the squeaky mom gets the cot. About 10 minutes after the meeting, the social worker arrived with a cot for me. It's still temporary as I should have a real bed, but this is a million times better than that convertible chair I was on for the last 2 nights.

After the meeting, I had a battle of wills with Ben about wearing clothes today and not pajamas. This boy would were jammies every single day of his life if I let him. Well. It was time for clothes. I won this time. I actually mentioned Ben's preference for PJ's at the meeting and I think at some point, his team will have a pajama day just for him.

After the meeting, it was time for OT with Betty. After getting him dressed, I loaded him into the wheelchair and off we went. He played with blocks, coloured and cut with scissors. I can see that he has stuff he needs to work on, but we have OT 3 or 4 times a week for the next 6 weeks, so he should be fine.
He was tired after OT though. An hour in his wheelchair wears him out. Especially since Betty undid the strap around his chest so he really had to use his core to stay upright. So back to the room we went.
He was so wore out that Stephanie did his PT session in his bed. Basically, just stretches and checking out his old braces to see if they would work until his new ones are ready. I couldn't believe how easy his braces went on. What a completely different experience than before. Before, I had to position him just right and stretch and strecth to just get them on. And then 5 minutes later, he'd just pop out of them. Now? It's like putting braces on Daniel. No resistance AT ALL! Amazing!

After lunch, the orthotist came by to cast him for his new braces. We were hopeful that he would be able to get dinosaurs on his braces this time, but nope, no luck. No dinosaur designs existed. I then was hoping that he would get the really cool camouflage ones, but he wasn't interested. If he'd had his choice, it would have been the Halloween ones...but I managed to steer him towards more of a tie-dye look that he calls "rainbows". So a compromise of sorts.

Then came the not-so-fun part of the day. His dressing needed changing. After much kicking and screaming, the nurse and I managed to get it taken care of. I was also hoping to give him a bit of a sponge bath at the same time, but he was not in the mood for anymore touching or prodding.

Then it was time for the playroom. Angie, another child life specialist, decided to put Ben and Nora-Lee (I had her name wrong in an earlier post, it's Nora-Lee, not Lora-Lee) to work...washing the toys. Which of course they loved! Ben gave all the animals a bath, while Nora-Lee worked hard washing dishes.

After playtime, it was time for another session of PT. This time, we actually went to the PT gym for some real activity...like crawling for the first time since surgery! Yes, he needed a bit of support from Stephanie but he basically did it himself! Totally cool! And, of course, Stephanie had a little game all made up for him with dinosaurs to keep him motivated.

It was hard for him though. Just to give you an idea of what the surgery has done to his body...before, he could crawl all over the house. He could crawl up 2 flights of stairs to go from our basement all the way to the 2nd floor to his bedroom with no help. Now? Well, he needs some support from Stephanie and he can only go about 4 or 5 feet before he has to rest. But. Stephanie was THRILLED that he could do this the first time trying after surgery. THRILLED.

Then, we did more bubble-popping with his toes like yesterday...where he was a real champ again. Tomorrow, she may have to weight his feet to make it harder for him.

And then...we were onto sitting. Ben sat on the bench with Stephanie behind him for support. And then they played a beanbag game. He was nervous at first, and needed support from Stephanie but by the end, he was doing it independently. And what an arm that kid has!

By the time the session was over, he was EXHAUSTED. So back to the room we went for down time and supper. After a few videos and stories, Ben was asleep by 7:15.

So yeah. An up and down day. Not quite the high that yesterday was, but nevertheless, a success.

2 down. 40 to go.

Shriner's - Day 1 (cross-post)

2012-01-31T22:40:00.000-04:00

I was worried what today was going to bring as I struggled to get comfortable and sleep last night. Ben had me up at least 5 times complaining that his tummy hurt and I was worried that he was going to be sick again today. But, luckily, that seems to have passed. I convinced him to have some toast and banana this morning for breakfast and after that, he never complained about his tummy again.

After we had breakfast and got dressed (well, I got dressed. Ben stayed in his jammies.), we decided to head down to the playroom to see what that was all about. Well. It is simply fantastic. Check the next 3 photos. It's HUGE (considering how few children there are around) and there are a TON of toys. Ben had a great time building a tunnel and garage with blocks for his hotwheels cars.

And you know what the best thing is? There are child life specialists there JUST to entertain our kids! How awesome is that? So basically, I get to sit back and enjoy my coffee while they play with Ben.

At around 11am, we headed back to our room for a bit of a rest and say good-bye to Daddy. Ben had just spent 90 minutes in his wheelchair and that's A LOT so early in his recovery. You many not have noticed from the pics but this isn't his own wheelchair. His wheelchair isn't supportive enough at this point to be secure for him. So for now, we are using a wheelchair from Shriner's. But it's obvious that he has great core strength. A lot of kids after having this surgery, are slumped right over and have a hard time to even sit up properly.

After some lunch, Betty came to visit us in our room. Betty is Ben's OT. She is fantastic and Ben was happy to get back in his wheelchair to play with her.

And I don't know how she did, but she actually managed to get him to hold his marker right!

After about 20 minutes with Betty, we headed back down to the playroom. Well. It got even better in the afternoon. A volunteer named Philip was there to play with the kids. At first Ben was quite shy around him, but after about 10 minutes, Ben was roaring with laughter and having a great time with him, as you can see from the pic below.

They made a bunch of pictures together with pastels and now they are hanging on the walls in our room.

Then, we headed off for Ben's for PT session with the PT-extraordinaire, Stephanie. At first, he was a bit nervous and didn't want HER to get him out of his wheelchair (it hurts his back a lot when we do transfers). He wanted MOMMY. Well. Once Stephanie moved him, he didn't want anything to do with Mommy after that. He prefers Stephanie because she's "gentle" and Mommy's not.

The first session was pretty relaxed. She started with bubbles. She would catch a bubble on the wand and he was to kick the bubble with his foot to pop it. She wanted him to kick by making his leg straight. So just by moving the leg below the knee. And also, she wanted him to just move one foot at a time. Both of these things are extremely hard for a kid with the kind of CP that Ben has. First of all, kids with CP have a hard time moving just one leg. And secondly, their tendency is to lift the leg from the hip instead of extending the knee.

Well. He did amazing. The left leg did it very well from the beginning. The right leg took a little longer to get going but eventually Ben was able to do it with his right leg as well. And of course, she made it all into a game. He had to burst 20 bubbles (10 with each foot) before she did. And if he did, then he got a prize.

Stephanie was thrilled with how quickly he could do this exercise. She told me that usually it takes the kids a few days to get it down. Woohoo!

After that, we moved on to stretches. It's important to understand that most of Ben's spasticity (i.e. tightness) in his legs is now gone due to the surgery. However, his muscles are still short. Because his hamstrings and calf muscles haven't been able to be stretched out properly (due to the spasticity) they are shorter than they should be. So although, Ben's legs feel all loosy-goosy now, he still can't get his heel to 90 degrees. His calf muscle is too short. So there will be lots of stretching over the next 6 weeks in an effort to get it to lengthen so he can get his heels down.

Usually, stretching is really painful and uncomfortable for Ben. Even with distractions. Today, he watched a Diego video while Stephanie stretched him. He didn't even complain at all. There wasn't even a grimace. You'd swear she was doing nothing to him. I asked him afterwards if the stretching hurt him and he said that no, she was really gentle. But according to Stephanie, "she was really hauling on him." So that's great!

After that, we headed back to the room for supper. Before supper arrived, we had the chance to do FaceTime with Daddy and Daniel. Oh my goodness, it was hilarious. They were so happy to actually see each other that all they did was make funny faces at each other and then laugh histerically. This went on for probably 15 minutes. Mixed in between faces, was lots of "I miss you" and "I love you". It was adorable.

After supper, we decided to go get in the wheelchair and go for a walk around the hospital (it's not very big...so we walk slow and stop and look at everything). While out, we found a Snakes & Ladders Game in the Family room so we played that (Ben won, of course). We even headed downstairs to where they hold the clinics to say goodnight to the fish in the big fish tank.

And then it was bedtime. Here's a photo of our room. It's pretty sparse at the moment, but we're trying to fill up the walls with pictures and cards. So far, Ben has received two packages in the mail. One from Grandma Robinson that was here when we arrived yesterday and one from Uncle Jeff and Aunt Sheryl and the kids that arrived today.

Basically, it was a great day. Ben enjoyed every moment of it. And now he's sleeping in the bed next to me as I type.

Let's hope it's another great day tomorrow.

Shriner's and Photo Update

2012-01-31T18:45:00.000-04:00

So. We are here. It feels so good to finally be at Shriners. Compared to the Children's Hospital, it feels like a hotel. What a huge difference. Except for my bed. Which is horrible. But apparently, that should be temporary. We are currently in a double room (although we are the only occupants) and the bed is one of those fold out chairs. They had those at Children's but they were much more comfortable than the ones here. But...this room should only be temporary. Those that are here for longer stays actually get a room with a real bed for the parent. So hopefully we move soon.

Ben is doing great TODAY. Yesterday, not so much. Both he and Clarence got some sort of stomach bug. Clarence was sicker than I've ever seen anyone. He left Children's yesterday morning at 7:30 and we only finally saw him at 5:30 at Shriners when he brought us our luggage. I'm not even sure how he managed that. He was supposed to fly home last night, but it was obvious that there was no way he could do that. So we rescheduled his flight to today. So he's enroute now. Still tired and weak, but somewhat better.

Ben didn't have it as bad as Clarence, but he did have an upset stomach and diarhea. Not fun when you have a kid who can't get to the toilet. But we got through it and today, we are doing much better.

He finally got into a proper wheelchair and we spent 90 minutes in the playroom playing with some blocks. It was great to see him back to himself.

Here are some photos that were on my camera that I wasn't able to upload to the blog from my ipad.

Day 1 after surgery. On his back. You can see his dressing where the incision was as well as the tape over his epidural.

Finally allowed to eat real food on Day 3!

So happy to finally be on his back!

Bubbles with Grammie!

Yeah! All the tubes and wires are gone! Time for jammies!

So now that I've caught you up on photos from our stay at Montreal Children's, I'll end this post. But I'll have one up soon (hopefully tonight) to tell you about our first real day at Shriner's. It was FANTASTIC!

Moving Day! (cross-post)

2012-01-30T09:24:00.001-04:00

Today we finally get transferred to Shriner's. I'm not sure exactly when that's going to happen but hopefully no later than early afternoon. Ben will be transferred by ambulance. I thought he would be excited about that, but apparently not. Let's hope that he warms to the idea soon!

The last couple of days have been mainly good with a bit of a hiccup last evening. Ben's catheter was removed yesterday morning and with that they want him to pee within 8 hours. Well, he hadn't peed after 12 hours and another catheter was threatened. Well. After much ado (including more vomit which went all over teddy and blankie), he finally peed!!

Otherwise, things have been very smooth lately. All the tubes and wires are gone and he's content to watch videos or play games on the iPad. He's not even on Tylenol anymore!

He did finally get to sit up in a wheelchair yesterday afternoon, but he wasn't too thrilled about it as it wasn't HIS wheelchair.

I had hoped to post more pictures off my real camera in this post but just realized that I'm missing a cord to hook it up to my iPad. Hopefully I'll find time to post more photos this afternoon.

I want to thank every one of you that sent us comments and emails over the last week. I wish I could respond to all of you personally but with over 100 people following along on the blog and many others on Facebook, I just can't. Please know that we read each and every one of them. Usually more than once. They have been a huge part of what kept us going.

- Posted using BlogPress from my iPad

- Posted using BlogPress from my iPad

Photos (cross-post)

2012-01-29T13:53:00.001-04:00

I finally figured out that there is an app that will let me post photos from my iPad! So here are some photos from the last few days:

Ben on Day 1 post-op

Happy boy!

Thank goodness for portable DVD players:

Finally on his back!

No tubes, needles or wires! Just jammies!

And with the bed elevated!

Posted using BlogPress from my iPad

72 hours (cross-post)

2012-01-28T16:19:00.001-04:00

We are now approaching 72 hours post-op. Ben is now eating real food (he particularly enjoyed the shortbread cookies that Grammies brought for him). His morphine epidural is now turned off although it remains in place for a little longer just in case. The only REGULAR medication is Tylenol. But if needed he can still be topped up with morphine or Valium. He now spends a lot of the day on his side. And soon he'll be able to be on his back. He also spends the entire day awake and alert. And sleeps well at night. We are excited to have the epidural and catheter removed. Hopefully that will happen tomorrow morning. And then he will get to spend some time sitting in his wheelchair. Us adults are all holding up well. Because there are 4 of us, we are all well-rested and well-fed. Mom even did our laundry for us today so we even have clean clothes. Mom and Dad will leave us tomorrow around lunchtime. We will certainly miss them as they have made this process almost enjoyable. Ben will hopefully be transferred to Shriner's on Monday. And we expect that Clarence will leave for home on Monday night. Daniel and the office need him!

So far, so good (cross-post)

2012-01-27T13:16:00.001-04:00

Overall, Ben has been a real trooper in the first 48 hours since his surgery. He moans and complains a bit but overall he's been an angel. Either he's sleeping or watching Diego videos. He even asked to play the 'Cut the Rope' game yesterday afternoon!Friday, 9amHe hasn't had anything to eat yet and won't really until he's on his back tomorrow. He's allowed to have clear liquids including broth, apple juice and Popsicles. So far he's stuck to apple juice and Popsicles. But he's really had very little. He had some nausea yesterday and even vomited once. Overall, his pain has been managed very well. He has an epidural that delivers a constant amount of morphine right to his back. He also has Tylenol, Valium, and anti-nausea meds regularly. His main complaints have been that he wants his daddy (if Clarence happens to be back at the hotel), that he wants to go back to the hotel, that he wants to roll over, that he needs his nose wiped, or that he's itchy. Today, he's even laughing and smiling for us!We adults are all doing well too. Clarence and I take turns staying the night and we each try to take breaks back at the hotel. Mom & Dad are around as backup most of the day. They even made a pot of chili yesterday for supper! Way better than hospital food!Friday, noonAround 11am this morning, the physiotherapist came by and helped us roll him onto his side. He was ok there for a while but it got uncomfortable for his arm so he's now back on his stomach. And he's even hungry! We tried jello first, but since it was orange and not blue he wasn't too happy with that. But we've now moved onto Cheerios and crackers so he's thrilled! If all goes well, he can have some fruit this afternoon. We really had no idea how a 4-year-old would cope with being on his tummy for 48 hours but it's gone surprisingly well. Presumably, the worst is behind us!

Recovery (cross-post)

2012-01-26T12:32:00.001-04:00

Ben's surgery did take the whole 8 hours that they said it would. He went in to surgery around 8am and we finally saw the neurosurgeon at 4:30pm when he came to find us in the parent waiting room. He told us the surgery went really well. They cut 44% of the rootlets which within the normal range for this surgery. Dr. Farmer thinks that Ben is good and strong and this surgery should be a good thing for him (I so wish he'd be more specific than this!)

We had to wait a few more minutes for him to make his way to the recovery room and then we finally got to go and see him. It is such a relief to finally see your child after surgery. Even though he was in pain and unhappy, it was just so good for me to see and touch that little face.

After some quick visits from Grammie and Grampie, Clarence and I hung out together with him til about 9:30 when Clarence headed back to the hotel to get some sleep. Only one parent can stay over night and really that makes more sense than both of us getting no sleep.

I stayed up reading and comforting him (when needed) until around 11pm. By then, I was pretty sleepy so I asked the nurse to bring over my bed. It was great. They had a hospital bed for me that they made the same height as Ben's so I could sleep right next to him. We both slept on and off til about 3am. Sometimes it was Ben that was awake and needed comforting. Other times, it was one of the 2 babies in there crying that kept us awake. This really bothered Ben. I just couldn't seem to explain well enough to him why these babies were crying.

Between 3 and 4 is when the pain started to ramp up. And it in this time that we found out that Ben was being transferrred to the ward and out of recovery. So off we went....to a PRIVATE ROOM. I couldn't believe it! I never thought we'd have a private room.

Once we got settled there, they gave him a bit more morphine and after some crying for his daddy, he managed to settle again around 5am. I managed to sleep more in the chair next to him until Daddy arrived at 6am to relieve me. Of course, just as I'm heading out, Ben becomes very upset and agitated again...it seemed the pain was back. I waited until the nurse found him some valium before I headed out. The nurse was also trying to track down a doctor to up his epidural as she thought he shouldn't be in that much pain. So hopefully that has since happened.

It is now about 11:30. I managed to get about 4 hours sleep and now I'm having toast and coffee and writing this update before packing up some snacks and heading back to the hospital. I was pleased to see a Facebook update from Clarence saying that Ben was doing better and watching his favourite video...and back to "just" complaining about laying on his tummy for 2 days and that Ben thinks that is FOREVER...well, it sure feels like forever!

I haven't really had a chance to check out Ben's new legs yet. When he was sleeping, I didn't want to disturb him and when he was awake, he needed so much comforting that the last thing I thought of was touching his legs. Hopefully today, we'll get to see and feel the difference!

Waiting game (cross-post)

2012-01-25T12:57:00.002-04:00

Well. He's in surgery. I'm so glad that I didn't know how hard it was going to be to hand over my child. I had expected that we would be with him until after he'd had the gas mask and was somewhat (if not completely) out of it. Nope. We had to hand over a screaming, terrified 4-year-old to someone he'd never met before. And watch him as they walked down the hallway, all the while yelling for Mommy and Daddy. Not something I want to ever have to repeat.

Other than that, things have been going well. I am so grateful for technology. That with a touch of a finger I can upload a photo or status update and within minutes have tons of replies and comments that touch our hearts. We really are feeling your support from all over the world. It was so great to wake up and have comments already from our friends on the other side of the pond who are hours ahead of us! And then we even received a video from Ben's preschool class! All of these things make this process just so much easier!

Mom and Dad arrived around suppertime last night. Ben was very happy to see them and so were we. And Grammie and Grampie even got to watch "How to Train your Dragon" with Ben...he loves to show other people his new favourite movie.

I didn't sleep too terribly last night...the first part of the night was good, but as we got closer to morning, I just couldn't stay asleep and finally got up at 5:15 to start to get ready to go. When I told Ben that today was the BIG DAY...the day he would have his operation. He just looked at me and said "that's not very exciting Mommy." And I guess he's right...it's not very exciting...at least not yet.

Check Ben out...watching Monster Truck videos on Youtube while we wait for our driver this morning.

Check in at the hospital was a breeze. (Ben's pretending to be a fish in the photo below.)

He wasn't too thrilled about having to get changed into his Johnny Shirt, but after a bit of bribery, we managed to convince him. How cute is he here?

And then we were off to the Operating Floor. We waited maybe another half hour and then he was gone.

We waited with Mom & Dad in the Parents waiting room for about 90 minutes and then headed back to the hotel for showers, breakfast and a bit of a break. We will head back to the hospital around 2pm to wait for him to be rolled out to the recovery room where he will stay overnight.

So that's it for now. We wait. And wait. And then wait some more.

Surgery Eve (cross-post)

2012-01-24T19:17:00.002-04:00

We are almost to the big day. It doesn't feel real. We have wanted this surgery for so long, I can't believe that it's happening tomorrow.

Monday and Tuesday consisted of more appointments. Monday was a fairly easy day. Ben had an evaluation by the physiotherapy department at the Children's Hospital in the morning. It went fine and Ben did everything asked of him. And then we headed up to Shriner's around lunchtime. In the afternoon, he met with a Child Life Specialist who went over the details of the surgery with him. Honestly, I thought this meeting was going to be more beneficial, but it was really a waste of time. The specialist wanted Ben to dress up like a doctor and "operate" on a doll, but he was having none of that. And she didn't seem to know what to do with a child who didn't want to go along with her little play.

Fortunately, Ben already pretty much understands how the surgery is going to go so this appointment wasn't crucial in my book.

After that, we headed downstairs to meet with the physiotherapy department at Shriner's. These are the people that are going to work with Ben in the 6 weeks of rehabilitation. We got to meet Ben's PT. Her name is Stephanie and she's AWESOME. We LOVE HER! And so does Ben. I thought this appointment would consist of another evaluation, but since Ben already had a comprehensive evaluation done by their department when we were here back in October, we didn't have to do it again. Great! Instead, Ben was measured for the tricyle and the prone board (i.e. stander) that he'll use as part of his rehab when he gets transferred back to Shriner's. We also got to see THE POOL! It is TEENY TINY. But Ben was still excited and told Stephanie all about his swimsuit (or "babing suit" as he calls it). We also found out that he'll need new braces. He will be fitted for those on Friday so that he can have them next week.

Particularly exciting was meeting a little girl name Loralee (sp?) and her mom. Loralee had the same surgery as Ben just 2 weeks ago. Loralee was REALLY quiet, but I had a great chat with her mom and I think we will get along great in the coming weeks. Plus, they are francophone...so I will get to practice my french while I'm here!
After that, we were done for the day! So of course, we headed back to the hotel for MORE SWIMMING! While Daddy and Ben swam, Mommy headed out to get some more groceries.

This morning we had to be up early as Ben's urodynamics study (bladder test) was at 8am. I will say that this was probably the worst part of our adventure so far. I'm not going to go in to all the details, but basically Ben was TERRIFIED of what they were going to do with him. And there was plenty of screaming involved. We did manage to get through the test with lots of help from Ben's new favourite video "How to Train your Dragon" as well as a lovely helper named Angie.

After that, we had a quick chat with the social worker where I proceeded to give her my thoughts on changes to a few processes that would help the parents (and child). And then we were off to see Occupational Therapy. I love OT. Compared to PT, it is just so easy. Ben really has very little problems with his hands so this is always an easy appointment.

As we were heading to the door, we actually ran into Dr. Farmer (Ben's neurosurgeon) who wanted to see Ben walk (he couldn't the other day as he was all drunk from the sedative from the MRI). Luckily, Ben was in an obliging mood and showed off for a few minutes with his canes. He is so tight in his calves and hamstrings that people don't expect him to be so good with his canes...so everyone was impressed.

Then, we were done. Done with all the crap. Seriously, we are all exhausted and can't wait for surgery day to get here.

We got back to the hotel in time to have some lunch and then a big long nap was in order for all of us. Ben and Daddy are just waking up now. Once, Ben stops snuggling his blankie, I'll see if he wants to go for swim.
My parents arrive in a few hours. They are in flight now and should be here between 5:30 and 6. It'll be nice to have them here for the days of surgery and recovery. I have already put mom in charge of groceries and cooking. I think she may even have some turkey bones in her suitcase so she can make a soup.
Think of us tomorrow as you go about your day. We leave for the hospital at 6:30 in the morning. We need to be there by 6:45 and his surgery will start at 7:45. The surgery will take 8 hours to perform.

The hotel where we are staying is very close to the Children's Hospital...like a block and a half. So I expect that we will go back and forth and not spend the entire 8 hours at the hospital. There will not likely be many updates to give during the day as apparently, we won't even get any updates til towards the end, if at all. For them (not us), the surgery is fairly routine and there will be nothing to tell us about.

So that's it. Surgery is (almost) here. I can't believe it.

Holding pattern (cross-post)

2012-01-22T21:38:00.001-04:00

This weekend was fairly low-key. It is quite cold out and getting around with Ben's wheelchair on horrible sidewalks meant that we mostly stayed in. That was OK though. We were so worn out from Friday that it was a welcome reprieve.

We finally managed to get Ben to the pool on Saturday. Was he ever excited!

He was so happy to get into the pool...even though it was pretty chilly.

And for the first time ever, he insisted on swimming "all by myself!" He continually told Daddy to "stop holding me!".

Later in the afternoon, we did manage to make it out to the mall nearby. We had supper at Nickels and got a few groceries. But that was about all Ben wanted to do so we headed back.

Today was another restful day. We spent more time at the pool, watched movies and football (go Pats!) and had St. Hubert take-out.

We did mention to Ben that tomorrow we need to go back to the hospital for more appointments. To which he asked "what are they going to do to me tomorrow Mommy?". Luckily, I was able to explain that tomorrow all he has to do is show off for everyone. Tomorrow Ben has 2 physiotherapy (PT) appointments. One at the Children's Hospital as the PT's there will be the ones to work with him first as he is recovering from surgery. And another at Shriner's where he will be filmed to show exactly what his abilities are pre-surgery. Plus, these PT's are the ones who will work with him during the 6 weeks of intense rehab.
So that was our weekend. Now the real "fun" begins!

So it begins...(cross-post)

2012-01-21T12:15:00.000-04:00

If you've been following along on Facebook, then you pretty much know the main details of our first day in Montreal. However, I do want to detail this whole thing so I can look back and read this later, so I'm going to try and blog lots. I feel like this surgery is such a big deal for Ben and our family that I want to write down almost every teeny, tiny detail so we won't forget any of it.

We flew to Montreal on Thursday afternoon. I was so grateful that the weather was good in both Moncton and Montreal and we even arrived a few minutes early in Montreal...with luggage and all. I seem to be cursed when it comes to air travel, so I always take a few minutes to appreciate it when everything goes good.

A Shriner named Alex was there to meet us to take us to the hotel. We are so used to seeing Shriners that are 65 and older, that it was a bit of a surprise to meet a Shriner younger than us...with 2 young children. Unfortunately, the instructions that he got for our pick up were not quite correct (2 parents and a child (yep), one night stay (nope), no wheelchair (nope), and no walker (nope)). So he thought his VW car would have sufficient room for us and our stuff. Of course it didn't. So Ben and I hopped in with him while Clarence (and Ben's wheelchair) took a taxi.

The traffic was pretty bad so it was slow going on the highway. And then of course, Ben got the "pee wiggles" and I was petrified that he was going to pee himself before we got to the hotel. Luckily, we were close to an exit and Alex quickly took us to a Mike's Restaurant where we snuck in to use the washroom.

The hotel is a suite hotel. It is the one that Shriner's uses for its patients and we are grateful that our hotel costs are covered and we don't have to worry about that at all. To describe the hotel, I would use the words functional and clean. It is definitely not fancy, but it's totally fine. I am very happy that we have a FULL kitchen. You never know what they mean by that, so I was happy to see a full size fridge, stove, sink and microwave. And it's even pretty well equipped with dishes and pots and pans.

We specifically requested that our room have a separate bedroom. Ben goes to bed by 7pm each night and it's nice if we can put him to bed in our room so we can stay up and not have to worry about waking him. Our room has 2 double beds and the living room has a pull out couch. So he sleeps in my bed (yes, Clarence and I opted to each take a bed instead of squeezing into a double. After years of sleeping in a king bed, we just can't imagine a double bed anymore) until we go to bed and then we move him to the pull out when we go to bed.

Ben is a champion sleeper and was exhausted when we got here so he fell asleep before we even left the room that first night.

That evening, I was very thrilled to get to meet another blogger named Jenny. Jenny lives in Edmonton and has twin boys that are almost 3 years old. They both have CP although are pretty differently affected. Jenny and I chatted for almost 3 hours before finally calling it a night around 11:30. I just love meeting other moms of kids with CP. It's like an instant bond.

Friday was a big day.

I didn't really think it would be, but it was. Ben was "only" scheduled for an MRI at 9:45 and a pre-op appt at 12:30. I figured that the MRI would take at most a couple of hours (after our previous experience when Ben was 18 months old) and that we'd have time for lunch between appointments. And I thought we'd be done for the day around 1:30.

Well. Ben had to arrive at the hospital by 8:30 so we could get him a hospital card. He had to fast from 3:45 am and could only have water or applet juice up to 6:45. So of course, he was hungry. After getting his hospital card, we went up to MRI. He had to be there an hour in advance.

The first part went fine...until the nurse started talking about putting his IV in. Because you have to lie still for the MRI for a half hour, young children are sedated for it. Probably even some adults are if they have issues with claustrophobia! Why she had to start talking about a needle 30 minutes beforehand made no sense to me. I understand that she wants to explain what's going to happen, but 30 mintues before?!?! Of course, Ben was pretty scared and upset. He also wasn't too thrilled about having to wear a Johnny shirt.

But we did manage to get him changed and we had to hold him down while she put the IV in...and after a few tears and a bit of screaming, it was all over. Compared to other kids in the room, Ben was actually pretty good and not near as upset or terrified.

We then had a little wait before he would go in for the actual MRI so he played a game on Mommy's iPad. How cute is he in his Johnny Shirt?

It was up to Ben whether he had Mommy or Daddy go in for the MRI with him...and as per usual, he chose Daddy. So off they went. I'm told he was asleep within seconds. The MRI took about a 1/2 hour and then he was back in the room with me. Where he continued to sleep for another 2 hours.

Finally, at 12:15 we shook him awake as we had another appointment to get to. Now, the sedative he was given is called Nembutal...and they warned us that he would be woozy with little balance afterwards. But we were a little unprepared for how woozy he would be. He was really too woozy to even go in his wheelchair as it doesn't recline. So the wheelchair was used as a cart for all of our stuff while Clarence carried Ben for the rest of the day. Needless to say, it's a lot of work to carry around a 40 lb. 4-year-old with no control of his body.

After some apple juice and some social teas, we headed to our next appointment. We met with another nurse who took Ben's blood (yes another needle, but luckily this time, she didn't tell him WAY before he needed to know). And then basically, gave us more details on how the day of surgery would go. She also gave us a little tour of the area of the hospital where Ben will stay for 5 days following his SDR.

We met with Dr. Farmer (the neurosurgeon) for a few minutes. Ben explained to Dr. Farmer that he needed an operation because his brain doesn't listen to his knees. Dr. Farmer was pretty impressed with Ben's analysis! Dr. Farmer showed us Ben's MRI and explained that it was basically what he expected to see. So that was good news.
We did learn that even though the "handbook" we received that said that the surgery is between 4 and 8 hours...that it's really an 8-hour surgery. So Wednesday will be a long day for us. Surgery will be at 7:45 and he won't be finished until around 4pm.

We also met with Dr. Farmer's resident for some quick and easy questions about Ben.

After that, we could have left for the hotel, but we knew we had to get a spine x-ray done so we figured we'd might as well go get it done. We were tired and ready to go back to the hotel, but knowing that we had the weekend to recover and that we would have 2 busy days on Monday and Tuesday of next week, we figured we might as well get it done. It was fairly quick and we were back at the hotel by about 3:30.

When we got back to the hotel, we really started to realize the effect that the sedative was STILL having on Ben. Seriously, it was exactly like dealing with a drunk. His balance was horrible and we had to constantly follow him around as he would fall over backwards when sitting. He was continuously laughing and purposely twirling around because it made him "dizzy" and that was fun! It was exhausting!

After some coffee and toast (is there anything better than toast?), Jenny and her family joined us for a little visit. It was so great to meet her kids. They are just adorable! I did take pictures, but as her blog is private as she doesn't want her kids pictures all over the internet, I won't post them here. Sorry!

That was pretty much our day. Ben went to bed at 7 and after some take-out and a little grocery shopping, we headed to bed at 9. We were totally exhausted.

Now we have 2 days off. So far, we have done nothing. Ben is now playing a game on my iPad while Daddy showers and I blog. We hope to hit the pool and that's about it. Unfortunately, the sidewalks here are a MESS so that makes getting around with a wheelchair almost impossible. Plus, it's absolutely freezing! There is a shopping centre really close though as well as a movie theatre. We may check the listings to see if there is anything appropriate for a 4-year-old.

Monday and Tuesday bring more appointments. Luckily, Monday will involve NO NEEDLES. Tuesday we likely won't be so lucky.
That's it for now! Sorry for the extremely long post, but I don't want to forget any of this experience. I really do hope that it's going to be a life-changer for us.

Thanks for reading!

What Ben knows (cross-post)

2012-01-18T18:43:00.002-04:00

On the night before we head off to Montreal for 8 whole weeks, I am experiencing almost every emotion all at once. Excitement, happiness, fear, anxiety, and dread. I am beyond thrilled that this surgery is happening. I am positive that this is the right thing for Ben. But I am oh-so-nervous about all that it entails. Three days of post-operative appointments that surely won't be much fun. An up-to-8-hour surgery. Days of recovery and then weeks of rehab. Eight weeks of being away from home. Away from Clarence and Daniel.

The most amazing part of all of this (so far) has been Ben's understanding of what is going on. He's only 4-years-old, but he can pretty much explain what's going to happen to him. He understands that we are going to Montreal to see Dr. Farmer (the neurosurgeon) again and that he is going to have an operation. Dr. Farmer will make a cut in his back and cut all the "bad" nerves and leave the good ones. He knows that he has to lay on his belly for 2 whole days after the surgery. He even understands that he needs to work really hard afterwards. And then he says "I'm going to walk with no walker and no canes!". Well. We'll see about that one. I sure hope he's right!

His main focus is that he gets to spend time in the pool every day (starting on day 14 after surgery). We have a little handbook that explains the surgery along with the days leading up to it and the rehab afterwards. There are pictures all the way through it. Ben loves to look through the handbook so he can see the boy in the pool. That's all he talks about.

Luckily, there is a pool at the hotel we'll be staying at this weekend and he'll be able to swim in the days before he's admitted for surgery. Hopefully that will help with the wait after surgery until he can go in the pool.

So yeah. We're ready for this. Here we go. (I just need to finish packing first.)

What we know so far (cross-post)

2012-01-13T10:06:00.001-04:00

Well. It was a long wait to get a surgery date, but we finally got the official call on Monday. Ben will have his SDR surgery on Wednesday, January 25th. Usually, they do these surgeries on Thursdays as there is a lot of pre-op stuff that needs to get done in the days leading up to the surgery. So instead of leaving on a Sunday as we had hoped, we need to leave for Montreal on the Thursday before (the 19th). Ben will have a variety of appointments on the Friday, Monday and Tuesday.

Because Ben's surgery and rehabilitation are being coordinated through Shriner's, pretty much everything is covered. That means that they cover 3 return flights (for Ben, myself and Clarence) and any hotel costs while we are there. They also have volunteers to drive us everywhere.

The current plan is that Clarence, Ben and I will fly to Montreal late in the afternoon on Thursday, January 19th. Ben currently has 2 appointments scheduled for Friday: an MRI (he'll be sedated) and a pre-op appointment at Montreal Children's in the afternoon. We will then have the weekend off (we still need to figure out what we're going to do on those days). Daniel will stay behind at home and will either be with our nanny or with my parents.

(A little side note: I am very active online and have met many other moms that have a child (or children) with CP. And I am going to be able to meet one of these moms during the first weekend that we are in Montreal! She has twin boys that both have CP and they are flying to Montreal to be evaluated at Shriner's on the Friday. They will be staying at the same hotel as us and we are currently working out a plan to get together...hopefully just us moms the first time and then hopefully with the kids and husbands at the pool on Friday afternoon. What a fantastic coincidence that we will be in Montreal at the same time!)

Monday and Tuesday bring more pre-op appointments at either Shriner's or Montreal Children's, the worst being a urodynamics test on Tuesday morning where they test the functioning of Ben's bladder. A potential risk of the surgery is bladder problems so they do this test to get a baseline on how Ben's bladder was working before surgery (at least, that's what I think they are doing!).

My parents will arrive on Tuesday evening to provide whatever support we need during the difficult days of surgery and recovery.

Wednesday morning, Ben will be admitted to Montreal Children's Hospital for surgery. Surgery can take up to 8 hours. And then Ben will be brought to recovery. For 48 hours following the surgery, Ben must lie flat on his stomach. It's only on Day 3 after surgery that he can be on his back with the bed raised or even eat.

On Day 5 (so Monday the 30th), Ben will be transferred to the Shriner's Hospital where he will start six weeks of rehabilitation. After the surgery, Ben will be floppy and unable to move like he did before. We are expecting that he won't even be able to crawl.

At this point, we expect that Clarence will stay with us until a day or two after he has been transferred to Shriner's. Then, of course, he'll need to be getting back home to work and to Daniel.

Once we are at Shriner's, I expect things to settle down some and for us to get into a routine fairly quickly. Ben will have physiotherapy twice a day for an hour. He will also see occupational therapy a few times each week. When Ben is not in therapy, I expect he will still be fairly busy as they have a school there. Also, I'm expecting with all the physical work he'll be doing that he'll need to start napping in the afternoons again. Ben is most excited for the 1/2 hour of pool time each day that he will start on Day 14 after surgery.

From what I've heard, it can be a bit boring for the parent staying for the rehabilitation. I am actually hoping to be able to work while I am there (at least some). I have also downloaded a number of books to read.

We also expect to have a number of visitors. Weekends won't be as busy for Ben as he won't have any official appointments on those days. We are currently hoping that Clarence and Daniel can come up to visit on most weekends. Clarence will stay the nights with Ben and I'll get to go to a hotel with Daniel. My mom has also offered to come up and stay with Ben so I can go home for a few days for some rest and family time with Daniel and Clarence.

I had the opportunity to speak with a mom who went through this with her child last year. It was great to hear what the process is like from a mom's perspective. She had nothing but wonderful things to say about everyone involved at both Montreal Children's and Shriner's. She assured me that the therapists know how to make the therapy fun for the child and that her son had a great time there. Of course, being away from her other children for 8 whole weeks was hard, but it was definitely worth it.

I was also excited to hear that there will be a little girl Ben's age there at the same time. She had the same surgery yesterday so is just 2 weeks ahead of us. Ben absolutely LOVES meeting other children "just like me" so I know this will be a great thing for him...and hopefully a great motivator!

The countdown is on! Just 6 days til we leave and just 12 days until surgery day!

We have a date!

2012-01-09T19:39:00.001-04:00

We finally have a date for Ben's surgery! His SDR will happen on January 25th. That's only 16 days away! And because of all the pre-op stuff that needs to get done, we have to be there the Friday before. So the 20th! That's only 11 days away! Craziness!I'm so glad that this surgery is finally scheduled. We are READY for this. Really ready. I know this is what Ben needs. So let's get the show on the road!

Reflecting on 2011

2012-01-04T17:40:00.001-04:00

(Photo taken by Megan McKinley Photography)

I've decided to copy what I've seen a couple other bloggers doing in order to reflect on the year that was 2011...going back through their posts in 2011 and copying the first line of the first post of each month. You can check out Jenny here and Tracey here.

I'll copy the original sentence first and then comment on it in italics.

January:

Just read this awesome post over at Hopeful Parents.

Yeah...my first post in 2011 was basically just linking to another post. But oh, was it a goodie. It was about "loving THIS life". I just reread it here. You should too. I think I'm going to print it out and put it on my bulletin board.

February:

Sometimes moments of pure joy show up when you least expect it.

This post was about the joy I felt watching Ben try out a wheelchair for the first time. And how much it surprised me to feel that joy. I still feel joy when I see Ben in his wheelchair. Independent and happy. Full of smiles and mischief.

March:

Ben got to try out another wheelchair today.

So yeah. More wheelchair stuff. We spent a lot of 2011 figuring out what wheelchair to get and then WAITING for what seemed like forever for it to arrive.

April:

I never really believed that I would get to this point.

This was the first sentence to a guest post I did for Ellen Stumbo over at Stumbo Family Story called "The Road to Acceptance". It's probably once of my best posts. Go check it out if you haven't already read it.

May:

Hey guys...sorry for not posting in almost a month now.

This was pretty much the theme of 2011 for me. I had a hard time figuring out what to blog about. This blog post was actually about our annual trip to Florida. I can't wait to go again this year...but this time, it won't just be my husband, the kids and I...my parents, my brother and his family and my sister and her boyfriend are all joining us. We're renting a huge house (it actually looks like a mansion) right on the beach!

June:

Hey guys. I started reading this great blog recently...it's written by an about-to-be-dad-of-triplets...all boys.

During the month of June, I was addicted to this great blog. His wife went in to premature labour with their triplets and unfortunately none of them made it. But his blog posts were so awesome. Full of wisdom and sincerity.

July:

Happy Canada Day Everyone...I'm one day late, but we were just so busy having such a great time that there was simply no time to blog about it.

This year was full of fun for the boys as they were now old enough to enjoy all the celebrations that a year brings. This was a big one. Canada Day! It was the first time they went to a parade and the first time they saw fireworks.

August:

I thought this CP-thing was supposed to get easier?

Hmmm...yeah. I struggled a lot last summer. Ben was getting tighter and tighter and his ability to use his walker was deteriorating. I thought he was going to keep improving and that the summer of 2011 would be great. Well. It wasn't. This was likely a big part of why we have decided to go through with an SDR for Ben in 2012.

September:

Yep. I'm taking a bit of a break. From blogging.

In September, I took an official break from blogging. I had nothing to say and just needed to officially say that I was "off". It was a good thing. It totally relieved the pressure to think of things to write about. And now I'm back to blogging (at least semi-regularly).

October:

We're officially in the before. As in "before Ben has a Selective Dorsal Rhizotomy".

I cheated a bit on this one. The first post of the month was just another link to someone else's blog. And this post is a BIG DEAL. We are still waiting to hear when Ben's surgery will be....I'm still hoping it'll be this month, but who knows? I did hear from the social worker who said that things were being finalized and that we should hear soon. So I'm on pins and needles waiting for the phone to ring every day.

November:

We're still waiting for a surgery date.

Yeah...more waiting. Waiting is hard.

December:

I cringe to think where I'd be (emotionally) if I hadn't found this blogging world and this amazing, special needs, blogging community.

This was a post I did as part of CP Connection. CP Connection was started by Ellen Stumbo as a way to bring CP bloggers together. Which is the whole reason why I blog. To connect. With you. With other moms dealing with special needs.
So that was 2011. It was a good year. Difficult but good. 2012 promises big things. Surgery soon and then hopefully by summer, we will be seeing some real improvements. And then the boys start school is September! How huge is that!?!? So it's time to say good-bye to 2011 and HELLO to 2012!

Blogging rocks!

2011-12-30T19:13:00.002-04:00

My favorite thing about blogging is the people I " meet". Usually I meet other moms with special kids and that totally rocks. But you know what rocks even more? Getting an out-of-the-blue email from a teenager with CP. This email was so uplifting that I wanted to share it with all of you. Enjoy!Hello!I just happened to come across your blog and I thought I'd send you a quick email. I'm a 17 year old with mild/moderate spastic diplegia CP. I am the only girl of B/B/G triplets, and we were born at 27 weeks, but my brothers do not have a disability. I had heelcord lengthening surgery at 2 and a half which enabled me to walk independently for the most part, although I did use forearm crutches for 2 years after I fell and broke my femur several years ago. While I don't play sports at school, I work with a personal trainer once a week at the gym to maintain strength and flexibility. Instead of playing a sport, I decided to take piano lessons many years ago, and that has been a hobby that I have really enjoyed, especially because my upper body is mostly unaffected by CP, so it's not a huge challenge for me. I have many wonderful friends, I get all A's, and I am looking forward to attending college in the fall! CP is tough to deal with sometimes, but I try not to let it hold me back. I just thought that maybe I could be a resource for you if you have any questions about what Ben's life might be like in the future. If you don't feel like corresponding with me, that is completely fine, but I just wanted to extend the offer! :-)

I ranted at a pregnant lady

2011-12-18T22:13:00.002-04:00

Last Thursday was the Annual Holiday Potluck for our local Moms of Multiples group. I'm a pretty active member in our local group and really do enjoy it, but there are times where it can be challenging to hold my tongue.

Over the years there have been many instances where I've wanted to cry, leave or just scream, but haven't. You see, Moms of Multiples LOVE to talk about their pregnancy, particularly how HUGE they were at 39 weeks pregnant begging their doctor to order their c-section. Or they like to talk about having 2 babies in their hospital room with them when all they wanted was a little bit of rest.   Or about how difficult it was to nurse two newborns at once.

If I let myself be sensitive (or am just having a hard day), I can find these moments a bit hard as I didn't get to experience this. It's hard to listen to them complain about what I wish I had had.

But I deal with it. Mostly because I look around the room and make eye contact with the other moms like me who delivered early and don't get to complain about these "seemingly" mundane things. Instead, when we get together (on our own...away from the moms who delivered full-term twins), we complain about NICU stays, not getting to hold our babies until they were days or weeks old, and how difficult those early days were. And some of us go even further, we "complain" about kids who don't walk, or talk, or eat on their own.

But...like I said...we keep these conversations to ourselves. Not because we're weak, but because usually there are pregnant moms at these events and really there is no reason for them to know what we've had to deal with with our twins. Not yet anyways.

Well...last week's event was different. I didn't keep my mouth shut. In fact, I'm afraid that I did a bit of ranting. And I didn't mean to rant. But I just couldn't keep quiet anymore.

I met a new member that night. She's a very nice girl who is 29 weeks pregnant with twins. Let's call her Sally. A few months back Sally met another local mom who was also pregnant with twins...and only a few weeks further along than her. And they connected. Let's call the 2nd mom Jane.

Well...Jane ended up delivering her twins last week by emergency c-section at 32 weeks.  Sally and Jane have chatted via facebook and texted since Jane had the babies. And according to Sally, "the babies were doing great and they were going to be fine."

Hmmm. I thought to myself. At this point, they are still only at 33 weeks. And yes, they may be fine, but at this point, there is no way to know that for sure. But...I held my tongue.

The conversation went on. And then she said it again.

"The babies are going to be fine."

Well. I couldn't help it. This is probably the ONE thing that drove me the most crazy after I had the boys. Everyone kept looking at stats and concluding that because they were 30 weekers, then the stats were good. It was very likely that they were going to be fine. So. Therefore. My boys were OK. They didn't have to worry.

Well. That's not the way it turned out, did it?  Ben and Daniel spent 8 weeks in the NICU. And yeah, even though they didn't have the worst NICU stays, it certainly wasn't all sunshine and rainbows either. Ben had 2 collapsed lungs, spent 4 days on a ventilator, and many more on CPAP. He had a Grade II brain bleed and PVL. He had an infection and multiple blood-transfusions. He stopped breathing more times than I can count. He even had a positive screening for cystic fibrosis. Pretty scary stuff. And people kept saying "I'm so glad to hear that they are doing so well".

Huh? Doing well? What part of my email update said that? It totally ticked me off. And by the time Ben was diagnosed with CP, I almost felt like yelling to the world "I TOLD YOU SO!!!".

Anyways...back to last week. So after she said that the babies were going to be OK two or three times, I finally stopped holding my tongue and said "I'm sorry to say this and I don't mean to scare you, but do you realize that they may not be OK? And it's pretty likely that they won't know for sure that they're going to be OK for months or even years?"

I really didn't want to scare a pregnant mom of twins at just 29 weeks, but I just couldn't hold it in.

And so I went on to explain what the NICU days are really like. That every morning when Jane goes in to visit her babies, the nurse or doctor will meet her to tell her what went wrong over night. The babies will have trouble breathing, maintaining their temperature and eating. And THOSE are just the MINOR things that occur in a NICU.

I, of course, went on to explain more of the things that happened to us in the NICU. I even went on to tell her that my son has CP (I usually don't tell pregnant moms these things). Yeah. I ranted.

I feel bad that I ranted. I'm glad I said something but I shouldn't have gone on like I did.

In the end, I think it was OK though. Sally seemed to take it all really well and was even grateful that I told her what it's REALLY like to have preemies.

Hopefully I didn't scare the pants off her.

So what about you? Does this stuff happen to anyone else? Or is it only me that goes off on a pregnant woman?

8 things I want you to know (cross-post)

2011-12-14T21:23:00.001-04:00

In the past 3-plus years since Ben has been diagnosed with CP, we have learned a lot. Not only about CP, but about the world we now live in. The world of disability. And since I have your attention, I thought I'd take this opportunity to share some of it.

1. First of all, I am not super-mom. Nowhere near it. I am just like other mom's out there...except I ended up with a child with a disability. I am doing EXACTLY what you would do if it happened to you.

2. Our life is the same as yours, but different. In some ways, I don't want you to think that we are any different than you. We have the same joys and struggles that you have. Most days, we are just like you. We get up in the morning (way too early in my mind), go to work,. take the kids to preschool, get groceries, do laundry and make dinner. We watch cartoons (probably too many) and play with lego and play-doh and Thomas. We go on vacation and then have to deal with paying the credit card off later. But then again, I do want you to know that our life is different than yours. Harder. More complicated. We have appointment upon appointment. We have to think about wheelchairs and walkers. We have to schedule therapies and surgeries. It sucks. We also have to think about accessibility whenever we go somewhere new. That's probably what I hate most. Every time we go somewhere new, it's such a struggle to figure out if (or how) it'll work for Ben. Sometimes we just don't go. Sometimes we do go and end up leaving because it just won't work (and usually tears ensue). And then sometimes we go and it works wonderfully.

3. Everyone has their THING. I have to believe this. Life sucks sometimes and sometimes it feels like it only sucks for us. Then I remember a friend who lost her mom WAY too early. Or another who lost a sibling. And another who has had a miscarriage or two or three. I have friends who have actually lost a child. I now know many, many people just like us, who have a child with a disability. So yeah, I believe that we all have struggles and problems and loss. We just happened to be the ones that has a child that can't walk.

4. Don't jump to conclusions. A six-year-old in a stroller may not be able to walk. A child having a meltdown at Wal-mart may have Sensory Processing Disorder.

5. You already know that your child is not the same as the next child. Your child is unique and special. Well, it's the same for children with a disability. One child in a wheelchair is not the same as the next. One may be able to speak, the other may not. One may be cognitively-delayed, the other not. Remember that just because a child (or anyone) cannot speak, that doesn't mean that they can't hear or understand you. Treat everyone with compassion.

6. It's not OK to stare. OK. You probably already know that. But maybe you don't know that it's OK to say "Hello". Especially to a child with a disability. It's even OK to ask questions. Really. Please teach your children that those with disabilities are the same as anyone else. And are just as worthy of your time.

7. Statistics are (almost) meaningless. Especially to people dealing with a medical condition of some kind. I remember when the boys were born at 30 weeks. The statistics seem so good for 30-weekers so those on the outside assume everything will be OK. For example, 90% of premature babies turn out OK. That seems like a great number. But that means that 1 in 10 are not. 1 in 10 develop a permanent disability such as cerebral palsy, chronic lung disease, blindness or deafness (and yep....we ended up being the 1 in 10). Imagine being told that your child had a 1 in 10 chance of having one of these disabilities. Would you think that everything is OK? This applies to anyone in your life. Many (or most or all) of you will at some point have someone in your life that is diagnosed with cancer. Perhaps this person will be told that the survival rate is 90%...sounds great...at first. Remember that they have just been told that 1 in 10 people with their condition don't make it.

8. And finally, no one wants to be pitied. Please do not pity us. Have compassion for us, but please do not pity us. Our life is good. More than good. We are blessed. We have two wonderful boys, good jobs, lots of help and support, a beautiful home and really more than most. We are happy. In some ways, I feel like we have MORE than you. Does that seem strange to you? Probably. But it's true. We have learned what is really important in life. Every night when I go in to the boys' room and see them sleeping, I am full of gratitude. Because I have two healthy, thriving children. We could have lost Ben. But we didn't. Aren't we lucky?

(I struggled with whether or not to press "publish" on this post. I'm hoping it doesn't sound preachy. My intention is only to share what we've learned as parents to Ben.)

The scoop on SDR (cross-post)

2011-12-13T20:38:00.002-04:00

To reiterate from the last post, CP is not curable. Treatments help to optimize what Ben can do with the body he has as well as help to manage the spasticity (tightness) in his legs. The two main management treatments that we have done are botox injections and serial casting. Both work for a while, but are not long term. In Ben's case, we're lucky to get a month or two of effect. Then he goes and grows again and we're back with really tight muscles again.

Soon after Ben was diagnosed with CP (he was diagnosed a week after his first birthday), I read about a surgery called Selective Dorsal Rhizotomy ("SDR"). From what I read, I could already see that Ben might be a candidate for this surgery.
To understand this surgery, you need to first understand that Ben doesn't really have anything wrong with his muscles. Really what is wrong is that his brain doesn't send the right signals to his muscles.

Very basically, a neurosurgeon will selectively cut a number of sensory nerve fibres that enter Ben's spine from his legs. The surgeon will test the nerve rootlets to determine which ones cause the spasticity and only those will be cut. The surgery can take up to 8 hours.

After the surgery, the spasticity in Ben's legs will be gone. Hopefully he will be able to get his heels on the ground (currently he is very high up on his toes...basically as high up as a ballerina is) and he will be able to stretch his legs straight out without a bend in his knees.

However, because Ben has been dealing with very tight muscles since birth, his leg muscles have not developed properly (and neither has his joints). So after the surgery, he will be very weak and will not be able to do what he is able to do now. He will need to relearn how to roll and sit and stand and "walk".

The recovery is very intense. He will need to remain on his stomach for 2 days after the surgery. After that, he will be allowed to lay on his side. Eventually he will be able to be on his back again.

The surgery itself will occur at Montreal Children's Hospital. From what I am told, the surgery will be on a Wednesday or Thursday. Ben will have a number of pre-operative procedures earlier that week. He will remain at Montreal Children's Hospital for 5 days. After that, he will be transferred to Montreal Shriner's Hospital. This is where he will have 6 weeks of rehabilitation.

Now you're wondering what we can expect from this surgery. You're wondering (and likely hoping) that this will mean that Ben will be able to walk.

Well. That's difficult to say. We know that there will be improvements. Perhaps vast improvements. But it's hard to know for sure. Of course, independent walking would be wonderful. Beyond wonderful. But we're not sure if that is realistic.

My hopes for this surgery is that Ben will be very functional with forearm crutches. My hope is that this will be his PRIMARY mode of getting around. My hope is that he can walk independently indoors. But I'm not sure if that is likely out of doors. Regardless, Ben will not come home from Montreal able to do all these things. This will take months, if not years, of therapy and work on Ben's part.

I am in touch with a wonderful mom whose little girl, Nina, had this surgery just 6 months ago. Nina was very similarly affected to Ben. She now can take steps independently at home. To me that is amazing progress.
Remember though. Steps do not mean independent/functional walking. Ben will never walk like you or I. That is not the point of this surgery. The point of the surgery is to do everything possible to allow Ben to be as independent as possible.

To read the full details of SDR, click on the link below:

St. Louis Children's Hospital

The deal with Ben (cross-post)

2011-12-13T19:43:00.003-04:00

(This is a cross-post from my new blog (a private blog open to my family and friends who want to follow our journey through SDR)).

(Photo by Megan McKinley Photography)

Ben has cerebral palsy, CP for short. CP is an umbrella term used to describe conditions that relate to brain injury that cause problems with movement and posture. CP can affect a person's ability to walk, talk, sit, eat and think. CP is caused by a brain injury shortly before, during or within 3 years of birth.

CP is more prevalent among children who were born prematurely. Ben (and Daniel) were born early at just 30 weeks gestation. That's 10 weeks early. Ben had more trouble as an infant than Daniel did. Both Ben and Daniel had brain bleeds that were found shortly after birth by doing a head ultrasound. Brain bleeds are classified from I to IV, I being least severe. Ben had a Grade II bleed whereas Daniel had a Grade I.

However, just because someone has a brain bleed, that does not mean that a person will absolutely develop Cerebral Palsy. A diagnosis of CP will not be given until the child shows delays in meeting the typical developmental milestones such as rolling, sitting, standing and walking.

The most important thing to remember about CP is that it affects every single person who has it differently. For some with CP, the condition is barely noticeable. For others, it can be so severe that the person relies entirely on others for help with mobility, eating and self-care. Ben is somewhere in the middle. In some ways, I would say that Ben's CP is mild as he can talk, eat, and use his hands. He is also smart as a whip. However, when it comes to walking, Ben's CP is more in the moderate range as he is not completely dependent on a wheelchair to get around but yet is unable to walk without help.

CP affects a person's ability to use their muscles and it does this in different ways. Therefore there are different types of CP including spastic, dyskinetic, ataxic, hypotonic, and mixed. These words all describe HOW CP affects the muscles. Ben has spastic CP. This means that the muscles affected have increased tone or tension.

Also, CP can affect different muscles for different people. Words used to describe which muscles are affected include: diplegia (both legs), hemiplegia (one side of the body), triplegia (both legs and one arm) and quadraplegia (both legs and both arms). For Ben, it's his legs that are primarily affected (his hamstrings and calves). Therefore he is a diplegic.

So, when we describe Ben's type of CP, we say that he has spastic diplegia (meaning tight muscles that affect the legs).

For Ben, having CP has meant that he cannot walk independently. He is able to walk with a walker and with quad canes. Although he is able to walk with these aids, Ben still tires very quickly and walking is very difficult. At home, he crawls to get around. And these days, Ben uses a wheelchair for mobility when we are outside the home.

It is important to remember these things about spastic CP:

The brain injury that caused the CP cannot be cured or reversed. It is permanent.
Treatment options involve managing the spasticity (or tightness) in his legs. To date, Ben uses braces (also called AFO's - ankle-foot orthotic) for walking. He has had botox injections in his muscles to alleviate the spasticity and he has had serial casting done on both ankles to help stretch his calf muscles. All of these treatment options are temporary. Botox wears off quickly (within 3 months) and serial casting is something that is done over and over, mainly because as Ben grows his muscles get tighter and tighter.
There is also a lot of therapy out there to help Ben learn to use his body to its optimum. Ben gets physiotherapy twice each week for an hour. He has also seen occupational therapy (as needed) and speech therapy. Other therapies that we have done include hippotherapy (horse-back riding) and conductive eduation. All of these HELP Ben to move better, but will never "cure" him.

I think that pretty much explains it. Here are a few links with more information if you are interested in learning more:

PubMed Health

St. Louis Children's Hospital

I love to answer questions about Ben...so if you have any, please ask!

A new blogging adventure

2011-12-13T18:33:00.003-04:00

I've started a new blogging adventure. This blog is a public blog. Anyone can read it and find it. In fact, I really want people to find it. With one exception, I really don't want anyone in my real life to find it. It's a place where I like to share what it's like to have a child with a disability. But if my real life people knew about this blog, I would feel like I couldn't be completely honest.

There are 3 people in my real life that know about this blog: my husband and two real life friends who also have a child with CP. These people "get it" so I'm OK with them reading it.

Ben is about to have major surgery (SDR). People in my real life want to know what's going on. They want to be able to follow our adventure. So I decided to create a new blog. A private blog where I can post more personal details and not worry about the whole wide world seeing it. So I've invited my real life friends to join my new private blog.

I'm going to cross-post the posts on that blog to this blog (with maybe a few tiny edits). So far I've done a few "information" posts on the new blog basically to explain what CP is (and how it affects Ben) and also what SDR is (and how we hope it will help Ben).

Basically, I wanted you (my followers) to know what's going on with us. I'm going to be loading a few of my posts tonight so you don't miss a thing from this SDR-journey we're on.

CP and personality

2011-12-06T20:13:00.001-04:00

Do you ever wonder how much your child's disability is affecting their personality? 'Cause I do. All the time.

Ben is definitely my more-difficult child. Life just seems so easy for Daniel and his personality seems to match that. Whereas Ben struggles just to move around. It's harder to get from room to room. Harder to do puzzles and play games. Harder even to eat supper. So I worry. I worry that this daily struggle is affecting his personality. Changing him. Making him cranky and difficult.

Or is that just his personality? Would he be that way without CP? Not all kids are easy-go-lucky.

But I hate that I even have to think this. Wonder this. Because then I'm not sure how to parent. Not sure how to discipline. I do try to be more understanding and mindful of how difficult things are for Ben. I try to make sure that he gets lots of sleep and rest. But sometimes, he just goes off the deep end and I have to be the parent. I can't let him get away with this behaviour. And it kills me.

St. Louis Children's actually states the following "Parents often note that their children become much less irritable and more loving after selective dorsal rhizotomy. We attribute this to decreased mental distraction by tight muscles."

I can only hope.

(We are still waiting for our surgery date. I spoke to the surgeon's administrative assistant last week and she said that we should get the date this week.)

(Photo taken by Megan McKinley Photography.)

On not being alone

2011-12-01T08:14:00.000-04:00

I cringe to think where I'd be (emotionally) if I hadn't found this blogging world and this amazing, special needs, blogging community.

You see...for some reason, the real world only seems to have normal people, normal couples, normal kids and normal families. And for me in particular...normal twins.

But the special needs, blogging world? Well, it has people with cerebral palsy, people with autism, people with down syndrome and spina bifida and on and on and on. It has kids that need wheelchairs, and walkers, and crutches. It has adults who need communication devices, guide dogs, and adapated vehicles. It has families whose homes are filled with medical equipment. And it has families whose calendars have multiple medical appointments week-in and week-out.

And even though, I know it's not really true that the real world only has normal families, it is certainly how it feels. Like last week, I took the boys to their first introduction to kindergarten (an-hour long "session" in the classroom) and of course, Ben was the only one who arrived in a wheelchair. And needed to be carried between tables.

When I'm in the "blogging" world, I can talk about botox, and surgery, and appointments and it's "normal". I don't get pity looks and comments like "I don't know how you do it". In the "blogging" world, I can celebrate the tiniest bit of progress and know that the people "listening" will really "get it". In the real world, I feel like I have to explain so much about what the progress really means that I usually don't even bother.

In the "blogging" world, I can actually call up another mom (yes, Ellen - I'm talking about you here!) and get all sorts of fantastic information on what it's like when your child undergoes selective dorsal rhizotomy. In the real world, people don't even know what cerebral palsy is, let alone what SDR is.

And for some reason, most importantly (for me), in the "blogging" world, twins don't always do everything together. Moms don't complain that they "can't keep up with their twins as they are always running in opposite directions". Instead, there are twins that are both affected by special needs or twins where only one is and the parents don't know quite how to handle that. There are twins that go to different schools and twins that don't really get to "play" together.

I guess what I'm trying to say here is that I would hate to imagine my life without this amazing community that I've found myself in. Without it, I would feel alone and on the outside of "normal". But with it? I feel "normal". My kids seem "normal". And our life seems "normal". Because in this community, special needs are the norm.

How cool is that?

(I'm blogging as part of "CP Connection". Click on the image above to see where it started and find other blogs that are participating.")

Still waiting (plus some random stuff)

2011-11-28T20:55:00.000-04:00

We're still waiting for a surgery date. They said they would contact us in December, but it feels like FOREVER since we were at the hospital in October and I JUST WANT THE DATE ALREADY!

It's frustrating waiting for this surgery to happen. Ben hasn't had any spasticity intervention (i.e. botox or casting) since June and he is CRAZY tight. We continue to work on getting his quads as strong as possible before surgery, but otherwise aren't seeing any real progress at this point. He walks very well with his quad canes but it isn't functional as he's quite slow and his endurance is pretty much non-existent.

We're also trying to come up with some sort of visitation schedule...which is hard to do without an actual surgery date. It's such a blessing that so many people want to come and visit and help us out during Ben's surgery and rehab. It's wonderful. I'm beginning to wonder if I may actually complain that we've had too many visitors!

We are gearing up for Christmas here at our house. We're hosting the office Christmas Party this year at our house so that just gives me even more excuses to decorate like mad. The boys are super excited about Christmas and Santa and presents. And pretty much ask me every day is Santa come tonight. I'm working on an advent calendar for each of them so we can start counting down to Christmas. Hopefully that will help them understand how many days are left before Santa comes.

I don't know about you guys, but we had major issues with the time change this year. Daniel has always been our early riser but was getting up around 6am before the time change. Well...after the time change, that became 5am and didn't change after THREE whole weeks. So I started looking for solutions. And found this...the Gro Clock. It's AMAZING! And totally worked. Basically the parent sets the time that he/she wants the child to get up. During the night, the screen is blue with a sleeping star on it. When it's time to get up, the screen changes to a yellow sun. At first we set it for 6am. It started working the first night. Now we have it set for 6:30 and neither kid will get out of bed before they see that bright, yellow sun. It was expensive though...$60! YIKES! But totally worth it for more sleep each morning.

I don't think I ever really posted about Ben receiving his wheelchair. Bad me. Well. We FINALLY got it at the end of October. Yep. It took over 6 months to get his wheelchair. Crazy. However, he LOVES it. LOVES it. And we love it. He's independent in it. He's at the right height (and can even reach all the elevator buttons now). I can even walk BESIDE him and talk to him like a regular 4-year-old instead of being behind him pushing him in a stroller. Yes. People look at us more now. But like his walker, people can't help but smile when they see him in it. He's just so happy! Plus, his front 2 wheels light up when he gets going fast.

Before

2011-10-30T20:55:00.000-03:00

We're officially in the before. As in "before Ben has a Selective Dorsal Rhizotomy".

Ben had an all-day evaluation at the Shriner's Children's Hospital in Montreal last week to determine if he is a candidate for SDR. Ben saw OT, PT, an orthopedic surgeon and the neurosurgeon...all with the goal of figuring out if and/or when Ben should have an SDR.

(For the details on Selective Dorsal Rhizotomy, check out this great link from St. Louis Children's Hospital.)

First of all, Ben was an absolute trooper. What a long day it must have seemed to him. Everyone wanted to see all that he could do...and more. And everyone wanted to touch and prod him...and get him to walk, just one more time. This started at 8am and by 3pm when Dr. Farmer (the neurosurgeon) asked to seem him walk again, he just couldn't do it. It was a full-on meltdown and so The Backyardigans finally came out.

But that was OK though...as PT had taken many videos of him walking earlier in the day. With a walker, with quad canes, with shoes and AFO's and in bare feet. Like I said, he was a real trooper.

And the unanimous opinion was that YES, Ben is an excellent candidate for SDR and should have one as soon as possible.

I have been hoping that Ben would be a candidate for this surgery since probably the 1st week post-diagnosis...when I was still in that google-as-much-CP-stuff-as-I-can stage. The main criteria for a patient to undergo SDR are (per St. Louis Children's Hosptial Website):

At least 2 years of age
Diagnosis of spastic diplegia, spastic quadriplegia or spastic hemiplegia
Some form of independent mobility; for example, crawling or walking with or without an assistive device
History of premature birth; if born at full term, child must have typical signs of spastic diplegia
No severe damage to the basal ganglia on MRI examination
Patients exhibit potential for improvement in functional skills after dorsal rhizotomy

And Ben meets all of these criteria. Dr. Farmer prefers to perform SDR on children under the age of 5. It's a balancing act between doing the surgery before major deformities occur and doing the surgery when the child can excel at rehab.

Check out Ben's before video...walking barefoot with quad canes. I am still amazed that he can do this in his barefeet.

So...we are waiting for the phone call to hear the actual date that Ben will have his surgery. We asked to have the surgery as early as possible in January...and that didn't seem to be a problem. Hopefullly we will get the call in early December.

We met with the social worker while there as well to discuss how our family with be able to handle Ben being in Montreal for 8 weeks this winter. Yep, 8 weeks. That's what is stressing me out more than anything else at this point. Luckily, I don't work any sort of real job. I take on contract work when I'm able to...so I just won't take on any more work. Also, my husband basically works for himself so he's also able to take off some extra time. And we also have a great nanny that will be able to care for Daniel while I'm away in Montreal with Ben.

There were a couple of highlights from our visit to Montreal. First, when describing Ben's medical history to a doctor, he interrupted to ask "if I was a nurse or in the medical field". Totally made my day...and impressed my husband too. I've been bragging about this ever since!

But the super-dooper big deal? We met a 16-year-old girl who had had an SDR at 5 years old from the same doctor. She was back for a follow up. I saw her earlier in the day. She was walking completely independently with her mom. I noticed a slight limp and immediately knew that she had CP....but totally thought that she had a very mild case. It turns out that at age 5, she was very similar to Ben...walked with a walker and way up high on her toes. She now walks completely independently! I cried while talking to her and her mom. She says that she does tire more easily than her friends and can only tolerate 2-3 hours at the mall...how amazing is that!

I did try to get some idea of what Dr. Farmer expects Ben's results to be. Of course, it is hard to say exactly. At this point, Ben can walk with a walker and quad canes, but neither of these are at a functional level. He tires extremely quickly and usually ends up in his stroller (well, now his wheelchair...since it finally arrived!). Ben was a Level 2 on the GMFCS until he turned 4. Now that he's over 4 and can't walk without an assistive device, he has moved up to a Level 3. I don't think that independent walking with no assistive device is the goal for Ben (although I think it is in the realm of possibility), but I do think that he should at the very least be very functional with loftstrands (otherwise known as forearm crutches). And I would be THRILLED with that result.

The way things are going at the moment Ben will be in a wheelchair. Able to transition well and be fairly independent, but in a wheelchair. The thought of him being able to walk (albeit with help) is absolutely thrilling.

Dr. Farmer also talked to us about the long-term results. 75% if his patients require no further surgery after the SDR. That statistic amazed me as I was certain that Ben would need additional orthopedic surgery(ies) after an SDR. Turns out, this is not at all certain at this point.

I'm also excited to be (hopefully) done with botox and serial casting. Yes, these are great tools for delaying surgery, but I will be thrilled to leave them behind. Over 60% of Dr. Farmer's SDR patients don't even require botox after surgery.

I think I've managed to mostly recap our day in Montreal. I'm sure I'll think of more details...and I'll try to post those too as I think of them.

And now the wait begins...

Christmas Cards

2011-10-05T19:32:00.000-03:00

Janet Harrold of Painting for Hailey is selling Christmas Cards that feature children with disabilities. Janet is an amazing painter (I have 5, yes 5, of her paintings) and all proceeds go to support alternative therapies for her granddaughter, Hailey.

She is taking orders throughout the month of October so that people can have their cards with lots of time before Christmas. Go and check her out!

Do you live here too?

2011-09-16T20:03:00.000-03:00

I said I was on a break...and I am, but I'm still reading and I just have to direct you to this awesome blog post by my friend, Shasta...Dispatches from the Land of Not OK.

There are many awesome blog posts and essays out there that are written for the parent of a newly-diagnosed child, but this one is meant for your family and friends...as a way to explain how life really is now. Love it.

Break

2011-09-07T20:28:00.000-03:00

Yep. I'm taking a bit of a break. From blogging. I'm still here. Still reading your blogs. But just not up for blogging at the moment. I'm not sure why. Maybe just a bit too busy (the understatement of the year).

Everything is good with us. Actually my new mantra is "Life is good today" just like the main lyric from The Zac Brown Band's song "Toes".

Because really life is good. Really good.

If you've been a long time follower and would like to still keep up with me (and Ben), then by all means, send me an email at aboutthesmallstuff at hotmail com and if I feel like I know you well enough we can be Facebook friends.

If anything big happens, then I'll be sure to pop back here and update you all. We're still hoping that Ben is a candidate for a rhizotomy and are keeping all fingers and toes crossed that it'll happen in early 2012.

Love to all of you. And don't worry, I'll be back.

The Life That's Chosen Me

2011-08-13T20:31:00.000-03:00

Erin Breedlove from Healthy, Unwealthy and Becoming Wise just shared this song/video on her facebook page. It really touched me and sounds so much like what I say when I try to explain what it's like to have a child with CP.

The Life That's Chosen Me (written by Karen Taylor-Good and Lisa Aschmann)

We had such expectations, we would soon be giving birth
To the next Chopin, the next Einstein, the greatest child on earth
And we'd be the perfect family, soon we'd have the perfect kid
We'd never have a challenge or a problem, God forbid

Oh but Life had different plans, so I need for you to understand

Don't desert me, don't ignore
I need friends now more than I ever did before
Show compassion but please don't pity me
I'm a parent just like you, it's true
But I have special needs

I need you to notice that my life's different from yours
I need you not to judge me, don't condemn and don't keep score
I'd love an extra pair of hands, or just a hug or two
I need you to acknowledge that I carry more than you

Got the world here on my back, so I just thought I would ask

Don't desert me, don't ignore
I need friends now more than I ever did before
What you take for granted comes so hard for me
I'm a parent just like you, it's true
But I have special needs

I need answers, I need help, it's so much work
And a miracle or two sure wouldn't hurt

Don't desert me, don't ignore
I need friends now more than I ever did before
It's not the life that I'd have chosen, but it's the life that's chosen me
I'm a parent just like you, it's true
But I have special needs

I need you to listen, I need you to care
I need your understanding, I need you just to be there
I need your friendship, maybe a hug or two
Oh God I need a miracle.........

The parts that most resonated for me:

"Show compassion, but please don't pity me"

and

"I need you to notice that my life's different than yours"

These two sentences are pretty much the EXACT same sentences that I use to explain our situation to my friends.
Did this song touch you like it did me?

On my way back up

2011-08-12T19:30:00.000-03:00

My last post was a bit negative, but honest. And above all, I try to be honest here when I write...otherwise what's the point? The reason I chose to write that post is basically because I know that there are others out there feeling the same way...and there's nothing I hate more than reading a blog (especially a special needs blog) that's all "sunshine and rainbows"...because that is simply not reality.

I truly appreciated ALL of your comments. Every last one of them. Thank you so much for reading and commenting...it really makes my day. I especially liked Sarah's comment "It doesn't get easier or harder. It just gets different." How true.

Since that post I think the rollercoaster has started to go up again...just check out this video of Ben walking up the stairs with his canes...totally independently!

Isn't he adorable in his train conductor costume? And isn't Daniel a typical almost-4-year old trying to get in the shot?

So yep...here we go...back up to the top of that rollercoaster!

Who said this would get easier?

2011-08-08T19:49:00.000-03:00

I thought this CP-thing was supposed to get easier? Because lately it's been feeling a whole lot harder. Last year, Ben was almost 3 and I thought it was hard having an-almost-3-year-old who can't walk. That was a walk in the park compared to having an almost-4-year-old who can't walk and is starting to understand how it affects his life.

It breaks my heart to see him holding back and watching all the other kids run circles around him. And I think it's starting to break his heart too.

Last year, he was doing so well with his walker, that I really thought that by now, he'd be using it like crazy and maybe even starting to use forearm crutches to get around...and maybe-just-maybe taking those first independent steps.

But nope. Spasticity totally sucks and Ben struggles more this year than last year. Often choosing a stroller or wagon over his walker.

Last year, I had two happy little boys who really had no idea that Ben was any different. This year, I take one little boy to soccer while the other one asks me why he doesn't have soccer cleats.

Last year, no one really noticed that I had an almost-3-year-old who crawled to get around. This year I feel their stares and unanswered questions.

So yeah...I'm feeling the struggle a bit more lately. I was doing so well all last winter...accepting this CP-thing. Not crying all the time. Actually feeling a little joyful on occasion. I thought I was on the path to "this CP-thing isn't so bad"...but instead I feel like I'm on a detour that has somehow brought me back to those days just after diagnosis. I'm having lots of thoughts that I thought I was done thinking. You know the ones. Things like "why us?" And lots of others along that line.

I guess when people describe our special needs world as a ROLLERCOASTER, they hit the nail on the head, eh? Now I'm just wondering when I start climbing upwards again...

Dear Daniel

2011-07-21T20:14:00.000-03:00

My dear Daniel;

I don't write about you much here on this blog, but that does not mean that I love you any less than I love your brother. You are kind and sweet and so full of personality.

You and I have a very special bond. I think back to those days when I was the only one who could feed you as you struggled through every feeding...

You are my thinker. My builder. My little architect. I love watching you as you play with your legos and blocks....not even knowing that I'm there....you are that engrossed in what you are doing.

And when you smile, the whole world smiles with you. You have the best giggle and I love it when I tickle you just right and I am rewarded with that sound.

There is something about how you reach up and hold my hand when we're walking together that makes my heart do a cartwheel...I can't describe how much I love you in that moment.

Never change.

Love,

Mommy

Playgrounds make me emotional

2011-07-19T20:43:00.000-03:00

There I said it. Playgrounds make me emotional. And you know what? They are everywhere. Taking your kid to the playground is pretty much at the top of the "this is what normal parents do" list. There is a playground just down the street from our house. We drive by it almost every single day. But we never take our kids there. Never. And every time we drive by it with the kids in tow, one of them will almost always say "I want to go to THAT playground Mommy". And I just say "someday sweetie".

You see...when you have a physically-challenged child, playgrounds are a completely different experience. No "sitting on the bench and chatting with the other moms" for me. Nope. I'm either helping Ben "climb" or catching Ben at the bottom or I'm on the friggin' thing with him. And if there are a lot of other kids there, well, we usually hang back and watch or just decide to go home and try another time.

So we drive around neighbourhoods and find playgrounds that work for Ben. And we've found a few. Playgrounds with lots of steps and not so many ladders...because Ben can climb steps. Playgrounds with just one big play structure instead of many small ones so I can keep an eye on both Ben and Daniel. And most importantly, playgrounds that aren't very busy. Because bigger kids seem even bigger when your main method of transportation is crawling. And Ben gets easily intimidated by bigger kids.

So yeah. Playgrounds make me emotional. They make me sad, angry, and frustrated on occasion. But sometimes, they make me happy...like when we went to the playground with "Sarah", Ben's CE friend. And it totally worked for THEM.

Father's Day Paintings

2011-07-13T21:06:00.000-03:00

I absolutely LOVE the paintings that Janet Harrold at Painting for Hailey has done for me in the past. The first painting that she did for me now hangs in my family room...you can read the post about it here. Because I loved that one so much, I had her do 2 more paintings for me that I could give to the boys' grandparents as Christmas gifts. I blogged about them here and here.

After our family vacation to Florida in May, I emailed Janet right away to see if she could do 2 more paintings for me...for my husband for Father's Day. It was a quick turnaround but she did it and here they are! I do have to say that the pictures of the paintings don't really do them justice....the colours are so much more vibrant in person.

Ben walking with Daddy at the beach

Daniel - in his own little world

As usual, Janet has placed a CP awareness ribbon in each painting...see if you can find them!

And if you would like a painting of your own child, Janet would love to do it for you...all proceeds go towards her grand-daughter's Conductive Education Fund.

Glasses!

2011-07-08T13:10:00.000-03:00

The boys got their new glasses today! Mommy is a little torn on the whole thing...they are so adorable, but I really wish we didn't have to deal with glasses. Oh well...in the grand scheme of things, glasses are really no big deal.

Check out how cute they are!

The only way to get one of the 2 of them, was to get them to do funny-faces.

Daniel - who obviously must not have been seeing very well...his prescription is STRONG!

Ben - I couldn't get a good one of him looking directly at me.

Happy (Belated) Canada Day!

2011-07-02T21:16:00.000-03:00

Happy Canada Day Everyone...I'm one day late, but we were just so busy having such a great time that there was simply no time to blog about it.

We are in Ontario visiting my husband's family for a week. We went to a Canada Day Parade in the morning. Here are the boys with their Canada shirts and flags!

We even managed to get a family photo of all four of us!

After the parade, we went down to the lake for an hour of "throwing stones in the lake"...a favourite activity. And then had hotdogs, sausages and fries from a local take-out. YUM!

After big afternoon naps, we went back into town to check out all the antique cars on Main St and then down to the lake front to wait for the fireworks to start. Here are all four of us waiting:

It was actually the first time the boys saw fireworks and they LOVED them! Absolutely loved them. Then it was time to go back to Grandma's house for bed.

We had such a fantastic family day!

Bad blogger

2011-06-24T21:30:00.004-03:00

Yep. I've been a very bad blogger. Looks like my last post was on June the 7th. That's horrible. We've been very busy and now that Spring/Summer is here, my evenings have gotten so full, that I've had a hard time finding time to blog. To get you caught up on all things going on with us, here's a list:

1. We're still looking into a Rhizotomy for Ben. Really looking into it. Referrals have been sent to 2 separate hospitals for more opinions. So we wait. While we wait, I research and read blogs. I've been totally addicted to this blog as Hannah just had her rhizotomy a little over a week ago.

2. Ben continues to struggle with very high muscle tone in his hamstrings and gastrox. We had botox for the hamstrings 4 weeks ago and had our 4-week post-botox appointment today with his physiatrist. The hamstrings have definitely loosened up but the gastrox are worse. For him, this makes walking with his walker very difficult so he hasn't been walking much lately. The physiatrist is still thrilled with all the progress he's making like: walking with canes, crawling up and down stairs, getting in and out of bed, and being totally potty-trained (more on this later). I think she's even more convinced that a rhizotomy is the way to go for Ben.

3. So...since his gastrox are so tight, he's in casts for the week. They wanted to do a number of weeks of casts, but I just won't do it. It's summer. And in New Brunswick, Canada summer is only about 8 weeks long (if we're lucky). So he's only getting one set. I'm struggling a bit with this decision, but I just cannot cast that boy for half the summer. Summer is the only real time that we actually play outside. Ben LOVES the beach, the pool and the sandbox...three things that don't mix with casts. So we'll hold off on more interventions until September.

4. Yep, like I said. Ben's potty-trained. I really can't believe it. Daniel potty-trained quite easily last fall but Ben was another story. And with our CP-kids we never know what is personality and what is CP. The truth is, he was never dry so we pretty much knew he was nowhere near ready...until about March. He started having dry diapers and our nanny forced the issue (meaning HUGE bribery and rewards) and now he's totally potty-trained. Of course, being potty-trained is not really any easier for us...since he needs so much help, but that's getting better everyday. He can actually walk into the bathroom with his walker, walk up to the toilet, get help from us to pull his pants and underwear down, and then stand up to pee....ahhh, the benefits of having a penis. Really, I'm still pretty amazed about all this.

5. I finally got away with Daniel for the night. For months, I've been meaning to do this. I am always going off somewhere with Ben and even though it's always for appointments, of course, Daniel doesn't realize this. So I've been wanting to get away with Daniel on our own for some time now. On Monday, I finally did. Off we went to Halifax to stay with friends for the night (who also have 2 little boys). He had so much fun and so did I. I feel somewhat guilty saying it, but hanging out with just one kid (who can walk) is just so easy. And enjoyable. We went to the playground...and I GOT TO JUST SIT ON THE BENCH AND WATCH! What a nice change! Now...I just need to figure out how to do this more often.

6. And now for the big surprise (well, it was for me anyways)...BOTH Ben AND Daniel need glasses. We saw their opthamoligist this week for our annual follow-up (due to their prematurity). We've seen her every year and there has never been an issue...so I really thought there wouldn't be this time either. Well, it turns out that Daniel is quite far-sighted and REALLY needs glasses. And Ben has astigmatism (not a shocker - since I have pretty bad astigmatism myself). So off we went to pick out glasses. Honestly, they were adorable, but I'm not looking forward to them arriving. I'm really not. I was pretty OK with Daniel getting glasses, but when she told me that Ben needed them too, it really got to me. Just one more thing for him to deal with. Ah well...the good news is that their eyes (i.e. retinas) are nice and healthy and that of course is the most important thing.

I think that should just about bring you up to date. Sorry, I've been such a bad blogger!

Hope

2011-06-07T18:04:00.005-03:00

I've blogged alot about acceptance. But I've blogged very little about hope.

I have accepted that Ben has CP. I have accepted that he needs braces and a walker to get around...and that most of the time a walker is actually completely useless. So we checked out wheelchairs for those situations when a walker just won't cut it. And I wrote about why I was OK with a wheelchair.

I said things like "all I want for Ben is happiness and independence". I stopped talking (thinking and hoping) about independent walking.

Ben is almost 4 years old. He is nowhere near walking without a walker or canes or crutches. His hamstrings and calves are EXTREMELY tight. We have done botox and casting ad infinitum (it feels like) with good results (to start) that fade away way too quickly (like in 4 weeks...nowhere near the 3 months they hope for). The step before walking is independent standing...like I tell family members, "you try to stand when you are on your tippie toes and your knees are bent".

Ben's therapists used to say that they thought independent walking at home was a goal for him. That was before spasticity reared its ugly head. Check out this old video of Ben walking with his walker...he's just over 2 years old here. His gait is pretty much perfect...so I see why they used to think that.

Now? Well, he is on his toes always...with knees bent (if the botox has worn off) and his left foot turns in horribly. And he even scissors some. And really? I think his therapist (and I) had stopped thinking about independent walking.

Of course, that's what we continue to work towards. It's why I have Ben doing PT twice a week and doing 6 weeks (plus) of Conductive Education each year.

But to be honest, I had given up hope. I had accepted but I had no hope. I really thought that the most we could hope for would be some independent stepping that would be nowhere near functional. I kept saying how pleased I was that he can do transitions so well and that he should be able to be independent as an adult that would likely choose between forearm crutches and his wheelchair as preferred methods of mobility.

What I didn't realize was was that this was making me very sad. Because I had given up on something that I had really hoped for early on.

And then, Ben's physiatrist said the words "rhizotomy" and "Ben" in the same sentence. And a teeny tiny bit of hope crept into my heart. And took root. I started doing more research. And watching youtube videos like this one of kids walking post-rhizotomy. And talking to Ben's PTs. And that hope grew.

I talked to Ellen from Stumbo Family Story whose little girl Nina had a rhizotomy just 6 weeks ago and is already knee-walking. And that hope grew even more.

I realize that we haven't even spoken to a surgeon yet and of course, (functional) independent walking may not be in Ben's future. But all of the sudden, I have hope again. And that feels awesome.

A fellow blogger needs our support

2011-06-01T20:46:00.004-03:00

Hey guys. I started reading this great blog recently...it's written by an about-to-be-dad-of-triplets...all boys. I've been enjoying and following along with the pregnancy...from the dad's perspective.

Well, today he posted this post. It seems that Baby A's water broke yesterday at just 21 weeks. They need lots of support, good thoughts and prayers (if you're the praying kind). I've been following along on twitter and it doesn't sound like things are going very well...just 30% chance of survival of all 3 boys...and as we all know, very high chances of disabilities with survival.

Video - ONE CANE!!!!!

2011-05-30T20:29:00.003-03:00

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.

Yesterday, I cried. Twice.

2011-05-30T19:48:00.004-03:00

I had one of those days yesterday. For the most part, I am a very upbeat and positive person. Most of the time, I can be OK with this whole CP-thing. Most of the time, I can see all the positives. All the things he CAN do. And not focus on what he CAN'T do.

But sometimes, I fail at at that. Like yesterday. I gave in to all the negatives. All the CAN'TS. And I cried. Once for just a few seconds until I could get myself under control. And once last night, for a very long time. Last night I cried huge, wrenching sobs. Tears streamed down my face. My eyes got all red and puffy. And I yelled and screamed about how much I hate what CP has done to Ben. To us.

I said things and thought things that I haven't said or thought in a very long time. Why did this happen to Ben? It's so unfair. I just want him to be able to play on a playground on his own. Why does this have to be so hard? Why can't I have twin boys that run, jump and climb together? I fucking hate what CP has done to our family. I am so sick of my whole life revolving around spasticity. And on, and on, and on.

It was awful. A really horrible night.

But today is a new day. And I am back to being me. The happy, positive me. And of course, I can never feel that horrible when I'm watching my Ben play. He's an amazing boy who is making fantastic progress.

One cane

2011-05-24T20:34:00.002-03:00

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.

SDR in our future?

2011-05-19T20:39:00.004-03:00

Ben had his 3-month botox follow-up with his physiatrist today. We've done botox twice now (mainly in his hamstrings). Botox has pretty much immediate effect for him, but unfortunately in tthe 2 times we've done it, the effects have only lasted about 4-6 weeks...nowhere near the 90 days we'd like to see.

So...Ben was nice and tight again today when she saw him. I, of course, was not surprised as we've been dealing with his tightness since about early April.

I WAS surprised by the discussion we ended up having. You see, Ben's physiatrist is extremely conservative. We've known this since the get-go and had planned to see some other experts early in 2012 to get additional opinions on what the best course of action would be for Ben. Basically, there are 2 options: continue rounds of botox followed by serial casting in an effort to delay any surgery for as long as possible OR do some sort of surgery now (like a selective dorsal rhizotomy) due to his extreme tightness.

Well...today, she actually stated that Ben is an excellent candidate for an SDR. She is going to refer him to another team at a children's hospital to see what their opinion is, but she's really thinking that an SDR would be a great option for Ben.

I couldn't believe it. I think my husband and I are a bit on the aggressive-side and to hear these words from a CONSERVATIVE doctor pretty much convinced me that an SDR is in Ben's future....likely in January 2012.

I am scared-to-death and excited-beyond-measure all at the same time tonight. I feel like we've just been spinning our wheels for the last year and now I feel like maybe there's a light at the end our tunnel.

Let the research begin!

(For information on Selective Dorsal Rhizotomies, check out this page from Gillette Children's Hospital.)

Too excited not to share...

2011-05-14T20:40:00.003-03:00

The Mobo Mini bike is now available to purchase!!! I ordered a red one for Ben on Friday and cannot wait for it to arrive. I just know that it's the PERFECT bike for him.

Now...if only the weather would improve so we could actually go outside...

Family vacation

2011-05-13T22:30:00.016-03:00

As I said in my last (very quick) post, we just had a WONDERFUL family holiday in Fort Myers Beach, Florida. We went to the exact same resort that we went to last year and had even more fun. It was truly the perfect holiday.

Last year, I had a bit of a rough time on this holiday... you can read about that here. But I didn't have ANY of those feelings this year. This year, I just enjoyed it. I enjoyed the kids. I enjoyed their 3-and-a-half-year-oldness. We plan to go again next year and it'll be a completely different holiday again...when they're another whole year older.

I actually met a family there. A girl named Lauren (aged 20) and her parents. Lauren has CP. And instead of being shy and not saying anything, I took the opportunity when it arose to talk to the Mom and then got to talk to Lauren and her dad as well. Lauren's CP is more involved than Ben's. Her arms and legs are all affected. She is very intelligent though (she's a sophomore in college)! It was so great to talk to this family. It was so inspiring!

So here are a few photos of our trip. We can't wait to go again next year.

Ben watching the waves

Sorry Daniel...but Mommy couldn't resist taking this one!

Daniel in the splash pool

Ben wiping the water from his eyes

Daddy and Ben

A rare family photo - on a dolphin cruise

Funny-face time!

Love this one of the boys

We had the boat to ourselves so Ben could crawl around as he liked

Daniel - What a natural!

Ben loved waving at the other boats we saw

Cuties

We had lots of fun in the pool

One last family photo - our last night there

Florida!

2011-05-10T22:53:00.003-03:00

Hey guys...sorry for not posting in almost a month now. Life got absolutely crazy...what I call "foolish crazy". Now it's calmed down as we're on our annual family holiday in Fort Myers Beach, Florida. LOVE, LOVE, LOVE this place.

I really don't want to spend the time writing a long blog post...so this family photo of us with our "funny faces" on will have to do for now.

I promise I'll blog more soon!

Progress with canes

2011-04-14T19:42:00.003-03:00

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!

Guest Post - Some advice

2011-04-11T14:14:00.002-03:00

I introduced you all to Tracey at The Trousdell Five a few weeks back, just after her son, Asher was diagnosed with CP. Tracey asked me to do a guest post for her and after many stop and starts, I finally managed to write something that I HOPE is helpful. Go check it out when you get a chance, and stop by here and let me know what I may have missed!

Gypped

2011-04-08T19:55:00.005-03:00

(Warning: Lately, most of my blog posts have been very happy and positive because let's face it, life is good. Very good. But something happened this week that caused some tears and some reflection and I started feeling pretty sorry for myself. So in an effort to be honest and share the highs AND lows of my life, I decided to share it with you.) I follow A LOT of blogs. Mostly blogs by moms of kids with CP...but I also follow a lot of blogs by moms of kids with other types of special needs. Even though the medical jargon may be different, the roller coaster of emotions that we're on is the same. I enjoy reading about Maya at Uncommon Sense. I started following this blog when I came across her very popular post called "Amsterdam International". If you haven't read this post, then you MUST DO IT RIGHT NOW. Anyways...this week Maya's mom posted some old videos of Maya as a baby. Video #2 is precious...featuring Maya's first laugh. Instead of laughing and smiling along with Maya and her parents, the tears started to flow. I don't remember the boys at that age. At all. I do have a few photos. But no videos. And I certainly don't remember at any point enjoying Ben and Daniel in that way. Doesn't that sound horrible? But it's true. I routinely describe the first year of their life as the worst year of my life. Dealing with Ben's CP diagnosis has been a walk in the park in comparison to that first year. So...I feel gypped. Totally gypped. I didn't get to give birth to ONE full-term baby. Instead, I had two babies that were born 10 weeks too early. I didn't get to take that one baby (or even two babies) home from the hospital with me. I had to leave them behind. I had to wait 57 days and nights before I got to bring them home. And when they came home, they were still on wires. I had to cut holes in any sleepers that had zippers instead of snaps for their wires to come through. I remember the first time that I successfully breastfed Daniel. Instead of feeling happy about it, I had tears streaming down my face as all I could hear was Ben screaming as they put an IV into his head. But most of all, I didn't get to enjoy my babies. Ben had colic. Daniel had SEVERE reflux. We were alone with no friends or family nearby. They came home in November with the warning to keep them at home and only take them out for doctors appointments. So we stayed home for 6 months. I didn't even dress them up in cute outfits. I was too tired. It was too much work. I just left them in whatever they were wearing (a sleeper) until it got dirty and then they got changed. I remember saying thank you to my husband for coming home from work every night. Home to an exhausted (and likely depressed) wife and at least one (Ben), if not two, screaming children. If someone had let me out to go to work, I'm not sure I would have come back. So yeah. That first year sucked. And I didn't even realize how much until I saw that video of Maya. Of her laughter. And of her parents truly enjoying her. And I wished that I'd had that.

The Road to Acceptance

2011-04-04T14:54:00.002-03:00

Ellen from Stumbo Family Story asked me to do a guest post for her. Something about how I came to terms with Ben's CP diagnosis and acceptance. Ellen and her husband adopted Nina last year from the Ukraine and Nina has CP. So after a few days of thinking and writing, I finally came up with a post called The Road to Acceptance. Go check it out when you get a chance and come back and let me know what you think.

It's going to be all right

2011-03-30T14:20:00.002-03:00

Lisa from "Welcome to Elijahland" just posted a letter she wrote to her younger self. And it says basically all the I've been feeling about our journey with CP lately. Go check it out. What would a letter to your younger self say?

Normal

2011-03-27T19:50:00.004-03:00

It is Sunday evening. The boys are in bed. And I am sitting her reflecting on our weekend. A weekend filled with normal. Sometimes I really try not to use the word normal. Instead I try to use the word typical. But tonight, typical just doesn't cut it. Tonight, I'm grateful for how much normal our family has.

Yes, sometimes our life is filled with stuff that isn't normal. Appointments (so many appointments), walkers, canes, wheelchairs, botox, casts, MRI's, pediatric neurologists, physiatrists, and on and on.

But sometimes, our life is just normal. Like this weekend.

Ben and Daniel spent the night at my parents house so we could clean out the basement.

Saturday afternoon was spent chasing TWO little boys around Costco with dinner out a local family restaurant...with TWO boys who insist on always having "a cheeseburger, french fries, ketchup and apple juice".

Sunday morning consisted of cereal in front of the television, much cartoon-watching, and a trip with Daddy to the "car shower". Two little boys returned home to proclaim that "they weren't scared and they didn't cry this time."

It was then naptime...for all of us. And then we wore ourselves out with fort-building, hide-n-go seek, and watching monster truck crashes on Youtube.

And supper...well pancakes and bacon of course (chocolate chip pancakes for Daniel!).

So tonight, I'm grateful. Grateful for how much normal we have.

(Ben and Daniel watching monster trucks on Youtube.)

Another addition to our club

2011-03-23T13:49:00.004-03:00

Have you guys met Tracey of The Trousdell Five? We "met" last July when she found my blog and then reached out to me via email to really connect. She also has twin boys, Nolan and Asher. On Monday Tracey joined our club when Asher was diagnosed with CP.

It wasn't a surprise to Tracey as it had long been suspected. But Monday was THE DAY for them.

I am in awe of this woman. If you want to see why, then check out this blog post that she did on Monday night. And if you're not convinced then check out this one that she wrote today.

So go and have a read and leave her a comment to show her how awesome this bloggy world that we find ourselves in really is. She's going to need us.

CP Awareness - Guest Post

2011-03-21T17:21:00.001-03:00

Cheryl over at The Beautiful Side of Hectic has been doing interviews with Moms of children with CP for the last week or so for CP Awareness Month. I was honoured to be asked to participate and my guest post is now up on her blog. Go over and have a look when you get a chance...and read the other guest posts too.

Thanks Cheryl for including me!!

Another Ben

2011-03-19T20:56:00.001-03:00

For some strange reason, I decided to type in "Ben Cerebral Palsy" into Google to see what would come up. I was assuming I'd come across some of my blog posts, but instead came across this amazing video of another Ben who has CP. You need to go check it out. Oh, and make sure you grab the kleenex box before clicking "play".

Spring time = bike time

2011-03-09T21:48:00.003-04:00

For the last 2 years, both Ben and Daniel have used the Smart Trike 3-in-1. It was the perfect trike for both of them. All we needed to do was add some velcro straps to Ben's pedals so his feet would stay on the pedals and it was perfect.

But....they are now too big for these awesome trikes...and I am passing them along to a friend who has twin boys (one with CP).

So we've been struggling with trying to figure out what to do for this year. We'll likely get Daniel a regular bike with training wheels. He's actually a bit clumsy and uncoordinated, but I hope he'll be able to handle a real bike.

We were thinking of getting Ben a bigger trike and then adapting it. My cousin's husband is awesome at projects like this so we figured he could help us.

We also found this website that sells extra big training wheels. And thought about buying Ben a real bike and adapting it with these training wheels. We are even thinking of getting these for Daniel.

I then looked into the bike that E has over at A Life Less Ordinary. But I concluded that it would be too big for Ben this year.

And then, I stumbled across the Mobo Mini. It's the same company as the bike that E has, but they've changed their name. And the Mini is for 2 to 5 year olds. And I'm in LOVE. I want one NOW. But I don't think it's available yet. I even emailed the company to find out when it would be available. But they haven't gotten back to me. But this is what I want for Ben. It LOOKS PERFECT.

So I guess we wait. I so hope we can get this for Ben. We live on a court and I can just see the boys out there driving their new bikes this Spring.

I'll keep you posted!

The Wheelchair Decision

2011-03-03T17:25:00.005-04:00

And by decision, I don't mean WHICH wheelchair would be best for Ben. I mean making the decision to GET a wheelchair for Ben.

I've been getting quite a lot of questions about the decision to get Ben a wheelchair. The most popular question has been something along the lines of "Ben is only 3.5 years old. And he's so mobile and uses his walker so well...so why does he NEED a wheelchair?". The 2nd most popular question is something more like "HOW can you be so OK with your son getting a wheelchair?".

I'm going to try and answer these questions the best I can. You may be in for a long read!

I've posted a link to this post by Katy about the wheelchair issue before. But here it is again. I first read it right after she posted it...so September 2009. Ben was just 2 years old and we were just one year past diagnosis. I don't think I'd even thought about the wheelchair issue before this post. And even though Katy is fantastic and I love her posts, it wasn't HER words that got me thinking. It was the 2nd commenter. Becca. An adult wheelchair user. She really got me thinking.

The more I thought about it, the more I agreed with her. Basically, her opinion is that is someone's PEERS would be walking, then if the kid was unable to walk on his/her own, then said kid should be in a wheelchair. NOT a stroller. And for some reason, this made total sense to me. I started paying attention. You see, it's pretty easy for me to know what Ben's peers are doing...he has a twin. A typically-developing twin. Every time after this post that I put Ben in a stroller with Daniel walking alongside me, I cringed. I truly did.

A few months after having my eyes opened, I asked Ben's physiatrist about getting him a wheelchair. He was just 2 years (adjusted) at that point. She thought it was too soon. She really wanted him to get better with his walker before he started using a wheelchair. Since he was so young, I left it at that.

About a month after that appointment, he started using his walker ALOT. We started making trips to the mall when it wasn't busy so he could practice. By the summer, he was really moving with it. I was glad we had waited. I'm not sure what the research (if there is any) shows about whether having a wheelchair demotivates a child with CP from learning to walk, but I was glad that we had pushed the walker as much as we had and he had gotten so good with it.

Fast forward til about a month ago. I didn't even know that I was thinking about a wheelchair until I asked one of his PT's about it. The words just kind of slipped out. I think that over the last 18 months or so, I had been thinking about it sub-consciously alot. Ben LOVES basketball. And he's actually pretty coordinated and has a good shot. I remember last year when the paralympics were going on...I thought alot about sports that Ben could play....adaptive skiing, horseback riding, sledge hockey...and of course, wheelchair basketball.

I don't know if you guys realize it, but it's pretty damn impossible to play basketball with a walker.

So I put the question out there last month and an OT came to chat with us about wheelchairs for Ben and how the process worked. And Ben tried out a wheelchair for the first time. I posted about that experience here.

We talked about whether Ben NEEDS a wheelchair. I guess in a way he doesn't NEED one. I could still opt to put him in a stroller if I wanted to. But I don't. So that's where the wheelchair comes in. To many of you, I'm sure Ben seems very mobile. And he is. In a way. Yes, he's great with his walker. But he tires easily. So whenever we go somewhere, if we bring his walker, we bring a stroller too. For when he gets tired.

And yes, they tell us that Ben will walk someday. Probably by the time he's 6 or so. But even then, is he going to be able to handle long distances? Unlikely. And if his class makes a trip to the zoo, I don't want him in a stroller...being pushed by a teacher. I want him in his wheelchair. Independent. And in control.

It takes a while to get a wheelchair. We're waiting to see the experts at the Seating Clinic in order to use their expertise to pick the best chair for Ben. Since Ben is so good with his upper body and can sit well, we're definitely going with a manual chair. But that's pretty much all I know at this point. I'm not sure how long the wait is to get into this clinic...pretty long I think. I'd love to have one now (now that he's tried a couple out and I see how much he loves them), but the initial goal was to have one by next year this time so that he could be proficient with it by the time he starts kindergarten in the fall of 2012.

And just because he's getting a wheelchair doesn't mean that we're going to stop working on walking. No way.

I don't think "wheelchair vs. walking" is the real decision here. For us the decision, is "wheelchair vs. stroller" and for me, that choice is obvious. Be pushed around by Mommy in the stroller OR be independent and in control in a wheelchair?

The wheelchair wins every time.

Wheelchair Fun

2011-03-02T20:00:00.005-04:00

Ben got to try out another wheelchair today. I really know nothing about it except that it is a Zippie...and he loved it. It took him about 5 seconds to figure out how it worked. Check the concentration in the photo below. (By the way, this one is one-size too big for him...that's why he has the block under his feet.)

After a trip down the hallway all by himself, including turning and going backwards, he decided it's even more fun to use it to play basketball!

And here's a video I took of him as he figured out how to use it...

Random cuteness

2011-02-28T21:39:00.004-04:00

The boys are obsessed with playing Hide-n-Seek at the moment. It's their favourite thing to do (besides build forts and obstacle courses with my couch cushions). They're pretty cute when they're playing...mainly because they're so bad at it. I think Ben believes that if he can't see me than I can't see him. I routinely find him cuddled up in the middle of the hall way floor with his eyes facing downward. And you know where Daniel's favourite place to hide is? The last place he found you. And he's pretty loud about it as he'll say "i want to hide here Mommy....you go count." And if you don't find them within about 5 seconds? They can't stop giggling. The best part for them is being found....it's totally cute.

They are actively learning their letters and now know all of them (if in uppercase). So now they keep trying to figure out what things say. We went to get their haircut the other day (they were such big boys and sat on the "board" for the first time instead of Mommy's lap...I was so proud). Daniel looks at the sign in the window and spells it out. "C", "L", "O", "S", "E", "D". The he looks at me and says, "that spells Haircuts". Wrong...but pretty good guess! Then when we're leaving, he goes "O", "P", "E", "N". "That spells Welcome to Anne's". Pretty smart kid, eh?

Ben pooped on the toilet for the first time today! And yes, I'll admin it, we've taken to bribing. I now owe him a present. It's funny how he thinks he can trick me. I went into the living room today and it was pretty obvious that he was working on a #2 in his diaper. He looks at me and says "Mommy, go away. Go in the kitchen"...basically his way of saying "Please don't put me on the toilet, Mommy". But I convinced him to try it out in exchange for a present. And he did it! He was really proud of himself. He even got to wear some Thomas underwear until naptime.

And just something totally random to end this blog post...I am addicted to CSI reruns.

Updates

2011-02-26T17:58:00.003-04:00

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.

Just a wee bit nervous

2011-02-16T19:56:00.002-04:00

Ben's getting botox injections on Friday. In his hamstrings and gastrox (calf) muscles. Under general anesthetic. In an operating room.

And I'm nervous.

But he so needs it. We just spent the last 3 weeks in casts trying to stretch out his calf muscles and have barely gotten anywhere. We've basically managed to be able to get him back into his AFO's more comfortably...but that's about it.

So yeah, he needs the botox in his calves. And his hamstrings need it too. So that means ALOT of needles...and his physiatrist is just not willing to poke him that much if he's awake. So that means general anesthetic. Yuck.

So keep us in your thoughts on Friday...although by the time you are all up and about, it'll likely all be over with since we need to be at the hospital at 7am Atlantic time (that's one hour ahead of EST). He should get the botox at around 8:30 and be all done by no later than 9:30.

I'm just hoping that we see some real progress after this. He'll do 2 more weeks of casting afterwards to really stretch those calf muscles once the botox is doing it's work. And then we're off for another week of Conductive Education.

He's been making some real progress with independent standing so I'm really hoping that once he can more easily get his feet flat that we'll see more and more improvement in this area....and then, well, we start working on an independent step or 2...won't that be exciting?!?!

So that's what I hold on to...the gains that I hope we'll be able to make afterwards. And I try to stop thinking about that operating room. I try.

Moving past grief

2011-02-11T22:05:00.004-04:00

We're 2.5 years past diagnosis day and I feel like I can really say that I'm "mostly" past the grief. I honestly don't remember the last time I cried about Ben, or CP, or seeing "normal" twins.

We're a happy family. I've got 2 amazing kids and we're happy.

I had an interesting conversation with one of Ben's PT's last week..the one that does his casting. She continually tells me how amazing I am and how different I am from other moms that she usually deals with. I don't think she's ever heard a mom ASK to talk to the wheelchair people because she WANTS a wheelchair for her son.

So I thought about that for a while. Partly, I think this is because I read SO MUCH. I think I read something about CP every single day. But I'm not out there reading medical jargon or googling. I'm reading your blogs. Learning from your experiences. And one reason I think I was maybe a bit ahead of the curve on the wheelchair thing was because of this post by Katy at Bird on the Street and the comments made by adult wheelchair users.

But mostly though, I think this is because I've somehow managed to move past the grief and into acceptance. I've somehow stopped thinking about the CP and the brain damage as "something that happened to Ben". For me, thinking about it that way meant that he "should" have been different. He "shouldn't" have CP. He "should" be able to walk. And thinking like that was like a poison in my mind.

Somehow, I've managed to just think that this is how BEN IS. This did not "happen to him". THIS IS BEN.

And when I think that way, I stop crying. And I start to see Ben for who he is right now. And I'm so happy that I get to be his Mom. Me. Not someone else. Me.

And aren't I lucky?

Joyful moments

2011-02-07T21:33:00.003-04:00

Sometimes moments of pure joy show up when you least expect it. Before today, if someone had told me that I would be filled with joy and laughter at the sight of my son in a wheelchair, I'm not sure I would have believed them.

But that's exactly what happened when Ben tried out a wheelchair for the first time. Absolute joy. In him. In me. In the OT. And in anyone else who had to come out of their office to see what all that laughter was about.

And when Ben looked at me and said "Can we buy one Mommy?"...what else could I say, but "Absolutely."

So thus begins our adventure to buy Ben's first wheelchair. I just wish I'd had my camera.

Spasticity Management

2011-01-25T19:54:00.006-04:00

Ben is in another set of red casts. His gastrox (calf muscle) is really tight again and I felt another round of serial casting was necessary. Luckily, I have access to some really great people and managed to get him scheduled for casting within just 7 days of my first call. Amazing!

But...the more serious issue is that he is SUPER TIGHT again. And I mean tight. The PT who did his casts today couldn't believe how tight he was. (She only sees him when we do some sort of spasticity management, she's not his regular PT.)

We're scheduled to have a conference call with his physiatrist in a couple of weeks to discuss our options for dealing with Ben's spasticity. So in light of that call, I'm trying to learn as much as I can about the different methods used to manage spasticity. I asked the PT today for a head's up on what I should be looking into.

So far, to manage Ben's spasticity, we've been doing stretching, botox and serial casting. Basically, the minimally invasive stuff. In the hopes of managing it well enough to put off surgery as long as we can. But, that doesn't seem to be working too well.

So, his PT suggested that I read up on baclofen pumps and selective dorsal rhizotomies ("SDR"). Wasn't quite expecting that today!

That doesn't mean that I haven't thought about these options, I just wasn't expecting to hear that from the PT today. The Centre that currently manages Ben's spasticity is considered to be quite conservative. So it was a bit shocking to hear SDR come out of her mouth.

I've been thinking about SDR's alot lately. Ben is a prime candidate for one (i.e. mostly affected in the legs and both legs equally-affected). But I'm scared to death of the rehab after. Ben is not the most cooperative kid in PT. Right now, we're pretty much doing whatever he wants at a PT session in order to keep him as happy as possible. I can't imagine having to do many PT sessions a week.

Anyways...the PT told me to check out Gillette's website for more information about spasticity management so I did. If you're dealing with spastic CP, you should too. It's quite an interesting read. Here's the link.

I'd love to hear from any of you that are dealing with (or have dealt with) this. To me, the parents are the true experts...especially the ones that have "been there, done that". You can either leave a comment here, or send me an email at aboutthesmallstuff at hotmail dot com

My Conductive Education Guest Post

2011-01-21T08:27:00.001-04:00

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.

Sliding fun

2011-01-10T20:01:00.004-04:00

I've been suffering from a bit of Mommy-guilt lately. You know the guilt that you're not doing everything you should for your kids? One such thing that has been causing this guilt is that my kids don't do a lot of the "typical" kid things. Like playing outside in the snow.

Mostly this is because it's so freakin' difficult for Ben to play in the snow (not difficult for him...he loves it...difficult for us). But another reason is that I really don't like playing out in the snow. I kind of an indoor girl. And my husband really isn't all that outdoorsy either, unfortunately.

However, we built an awesome huge deck last summer and it's turned out to be a great place to play in the snow. Over the holidays, we had a few snowstorms and I would just bundle the kids up and send them out on it while hubby was shovelling it off. He bought them a few kid-size shovels and they were in snow-heaven. And it wasn't even all that difficult for us. Ben really didn't mind crawling around out there. It's so nice and flat on the deck that it works pretty well for him.

Then the idea came to use the ramp off the back as a hill for sliding. So off the nanny went to get a sled and away they went. I will give all credit to this afternoon's sliding fun to her since she was the one doing all the work...carrying Ben up to the top each time.

Here's Daniel going down the ramp:

And here's Ben - I can't believe that he chooses to go on his knees..but he loves it!

And here's Ben after he fell off!

Isn't that smile just awesome??

Special Needs Sunday - Guest Post

2011-01-09T14:52:00.001-04:00

I'm a guest poster over at The Beautiful Side of Hectic today! Go check it out.

Conductive Education - I'm a believer...

2011-01-08T20:24:00.007-04:00

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.

Loving this life

2011-01-05T22:28:00.002-04:00

Just read this awesome post over at Hopeful Parents.

And had to share it with you in case you missed it.

My favourite line..."threw away the old recipe for happiness and wrote my own..."

Are you loving THIS life?

Happy Boxing Day!!

2010-12-26T22:07:00.003-04:00

Happy Boxing Day everyone! I hope you all had a wonderful Christmas with your families. We certainly did. I wanted to share this photo with all of you. Ben has gotten more and more agile with his walker over the last few months. He likes to "jump" where he lifts his feet off the floor by using his arms on the walker. Well...this has now escalated to him lifting himself up onto his walker so that he can now sit on the back of it. He figured this out at our annual Christmas Eve party with my cousin Scott egging him on. And then of course, my cousin would push him around while he was sitting on the back of it. It was truly fantastic! All of Ben's cousins wanted a walker too so they could be as cool as Ben.

It was truly a magical night. It was the first time that most of my extended family saw Ben as a true 3-year-old...upright and walking. Instead of sitting and crawling. It was really crowded and he wasn't able to use his walker the whole evening but for the parts of it when he could, it really paid off.

We are awaiting a major snowstorn here in New Brunswick, Canada...supposed to arrive overnight. Lots of the white stuff (yeah!) and wind too. So we won't be going anywhere tomorrow....so more time playing with all our new toys that we got from Santa.

If the weather if affecting any of you out there, please don't go out on those roads. Stay home with your families where it's safe.

Happy Boxing Day!

Christmas is once again upon us

2010-12-15T20:45:00.007-04:00

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!

One more painting

2010-11-26T21:15:00.004-04:00

So. I loved the last 2 paintings that Janet (from Painting for Hailey) did for me, that I had her do just one more. This one is for my parents for Christmas. I sent Janet a picture I had taken of the boys playing with my dad at the beach this summer and this is what she turned it into. Isn't it amazing! I think it's my favourite one yet and am dying to give this to my parents...I don't know how I'll wait til December 25th!

And of course, she's placed a CP awareness ribbon on the painting...this time over my dad's heart. Love it.

2010-11-26T14:46:00.002-04:00

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"

2010-11-23T22:25:00.006-04:00

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!!".

Do they really want to know?

2010-11-16T20:20:00.005-04:00

I never know what to say to people when they ask me "how's Ben doing?" They are very pointedly asking me about Ben...because he has CP. But yet, I never know how to answer them.

Are they just asking to be nice? Or do they really want to know? I can never figure that out. I pretty much just say "Oh...he's doing great". And leave it at that. Maybe show off a recent picture or two.

Do they really want to know all the details of having a kid with CP?

I mean I could tell them that he's made virtually no progress in 6 months due to the vicious struggle we're having with his spasticity at the moment. We're in a constant round of botox and casting just to keep up with the status quo. We're supposed to be working on independent standing and maybe even an independent step or 2, but we're just stuck trying to keep him from getting so tight he can't even walk in his walker.

I could tell them that every morning Ben asks me "where are we going today Mommy?" because he knows that we're very likely going off to some appointment with some doctor or PT or OT.

Or do I tell them that I get this feeling that we're about to be referred to an orthopedic surgeon and that surgery scares me to death?

I don't know about you guys, but sometimes I wish there was a "special needs" handbook to help me navigate through this life I've found myself in.

Gotcha

2010-11-15T16:12:00.006-04:00

Happy Gotcha Day Ben and Daniel!

Yep, 3 years ago today, we finally got to bring our boys home after 57 very long days in the NICU.

I've been reflecting all weekend about that time. It was a Thursday. And all week we'd been preparing to bring DANIEL home. Just Daniel. And then all of a sudden, Ben was pronounced "ready to go home" and we got to bring them home together.

We had training on how to use their pulse oximeters and oxygen. We filled prescriptions...many prescriptions and were given very explicit instructions on how to administer them. But you know what? We weren't one bit nervous. We'd been caring for these boys for 57 days...8 weeks and 1 day and we were READY. Ready to be a family.

And you know what else I remember? Even though they came home with "equipment", we really thought we were bringing home TWO healthy babies. I really thought we were in the clear. I had no idea that CP was something that couldn't be diagnosed til later. I didn't even know what CP was for that matter. So I thought my boys were going to be totally "normal"...whatever that is.

And you know what else? I'm glad I thought that. It was hard enough with 2 newborns that I thought were going to be fine. What would it have been like if I was worried that Ben might have CP? I can't even imagine how I would have gotten through it.

And when I think back, I realize how naive we were. Not just about the CP stuff. But about what life with 2 newborns was going to be like. And again, I'm glad I was. Because if I had known how hard it was going to be, I'm not sure I would have made it.

So yeah...today we're celebrating "Gotcha Day" in our house. Not by doing anything big...but by reflecting. Appreciating how far we've come in just 3 years. I look at my two 3-year-olds and wonder how we got here. How is it possible that I now have 2 preschoolers? Who know their alphabet, can count to 10, know the names of at least 5 dinosaurs, and most of the planets? How did this happen?

I don't know how it happened, but I'm so glad it did. I am so grateful to have these 2 little boys.

Holland...updated

2010-10-22T00:15:00.002-03:00

Hi all. I'm in Montreal for a few weeks working (and playing). I haven't had any time to blog and I've been barely keeping up in reading all of yours. I did stumble across this post by Jess at A Diary of a Mom and just had to share it in case you haven't come across it.

More painting

2010-10-02T00:09:00.006-03:00

A while back I posted a photo of a painting that Janet did of my boys. Janet is the grandmother of Hailey and has a great blog that you should check out when you get a chance.

Well, I decided that I'm going to get Janet to do a few more paintings of the boys for Christmas gifts. This one is from a photo I took of them this summer when we went to Ontario to visit my husband's parents. This beach is just minutes from their house. And this painting will be their gift.

Janet always puts a small CP awareness ribbon in all her paintings now in honour of Hailey. In the first painting she did, she put the ribbon over Ben's heart. In this one, it's over Daniel's heart...because "she's sure that Daniel's love for his brother is great". And that made me cry.

New dreams

2010-09-30T16:14:00.006-03:00

Bird on the Street posted this link on her Facebook page the other day. Go over there right now and check it out...then come back here...otherwise this post will make no sense to you.

...

I want to find the time to get my photo done with my sign and submit it, but I don't know if I'll have time (I'm actually in an airport right now on my way to Toronto for 5 days...and then I'm only home for a week before I leave again, but this time for 17 days).

I laid in bed the other night thinking about what I would tell myself the day before Ben was diagnosed with CP. I tossed a very ideas around and then came up with this one:

You will dream

new dreams

for your family.

And this one has stuck in my head all week.

I remembered back to when I was pregnant and knew I was having 2 boys. I remember dreaming of them rough-housing, playing sports together. Hanging out with their dad in the backyard...throwing the football around.

I didn't have a lot of dreams for them. But when I thought of a life with twin boys...this is what I thought of.

And then. D-day. Exactly one week after their 1st birthday, a pediatric neuroligist says to me "you know he has CP right?" And those dreams? Those simple dreams went poof. Up in smoke.

I know that dream might seem silly to some. Who cares if your kid can play sports? Lots of kids don't play sports and they're OK.

And yep, they're somewhat right. But it was MY dream. MY dream of a life with my sons.

So yeah...those dreams died. And I mourned them. For a long time.

And then eventually, I started dreaming new dreams. Even better dreams.

Dreams of Ben playing wheelchair basketball - you should see his hook shot!

Dreams of Ben skiing (yeah, with adaptive equipment) and being even faster than Daniel for once.

Dreams of Ben going off to college.

Dreams of Daniel being an awesome brother and a better human being for having had Ben as his brother.

Dreams of our family just being a family that loves, laughs and cries together.

...

What are your dreams for your family?

Multiples and More - Featured Blogger

2010-09-21T21:46:00.001-03:00

I'm the featured blogger today over at Multiples....and More! Go on over and check it out!

Three is just around the corner

2010-09-13T20:59:00.003-03:00

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.

Casting Update

2010-09-12T19:29:00.005-03:00

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):

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.

New boots

2010-09-01T16:00:00.002-03:00

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!

Lots of awesome stuff

2010-08-30T19:53:00.006-03:00

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!

Botox Update

2010-08-14T20:37:00.003-03:00

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!

Botox

2010-08-11T22:09:00.002-03:00

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!

Blah

2010-08-08T19:04:00.004-03:00

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.

Back

2010-07-31T21:57:00.007-03:00

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

Mostly Wordless Wednesday

2010-07-21T19:55:00.003-03:00

For this week's edition of Mostly Wordless Wednesday, I bring you a photo of Ben from July 2009...a whole year ago. It's hard to believe that at this point last year, he was just learning to 4-point crawl. He wouldn't do it much at home, but always would do it when outside...especially at the beach. So we spent a lot of time last summer out on the grass or at the beach!

Botox, Serial Casting, and New Braces

2010-07-20T19:36:00.002-03:00

Ben had his first Spasticity Management appointment today and the Stan Cassidy Centre for Rehabilitation in Fredericton, NB. We've been there once before. At that time, it was just a huge (3-day) evaluation and he was added to their Spasticity Management list.

It was a great appointment considering it was from 12:30 to 3pm (yep, you guessed it...naptime). Ben was awesome. Fredericton is a 90-minute drive away for us and although he didn't nap on the way up, he did rest and I think that made all the difference in the world.

We met with the PT, OT and the Physiatrist. They were all awesome and I have no doubt that Ben is in the best hands when he's there. These people know what they are doing. And they are nice too. Love them.

My goal for this appointment was to get Ben on the list for Botox injections. I wanted them for his ankles / calves...they are just way tighter than they used to be. I also wanted some advice on what we need for AFO's / braces now since the ones we have are getting too small and probably aren't sufficient for his needs anymore.

In the end, they were more concerned with his hamstrings then his ankles. Which surprised me. I need to talk with his regular PT's to understand it more. Their recommendation is botox for the hamstrings and serial casting for the ankles / calves. And then of course, new braces after the casting is done.

I'm not sure when the botox appointment will be. There is quite a wait for the OR (like January 2011) if we do it under general anesthetic...which is just way too long. So we're going to do with it with oral anesthetic in September (hopefully). Casting starts in September too.

I'm still digesting all this information. It's alot to take in at just one appointment.

Painting for Hailey - Update

2010-07-18T19:49:00.002-03:00

If you've been reading my blog, you know that Janet (aka Hailey's Grandmother) at Painting for Hailey has offered to do a painting of your child for just $100! All proceeds go to Hailey's Conductive Education fund.

Well....I immediately sent Janet a cheque and a photo of my boys. This is the photo I sent her. They are playing with a decorative garden frog from my Mom's garden.

And Janet just emailed me a photo of the finished product! It takes a few weeks to dry so I have a little while to wait before I get to see the original but I'm thrilled with the photo!

My favourite thing about the painting? If you look closely on Ben's shirt, just where over his heart, there is a small green CP awareness ribbon. Janet puts one somewhere in each of her paintings now. How cool is that? It brought tears to my eyes when she told me about it.

Isn't it great?

My take on Conductive Education

2010-07-15T20:39:00.004-03:00

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!

Mostly Wordless Wednesday

2010-07-14T21:39:00.003-03:00

I've been a very bad blogger lately...so I'm taking the easy road back into it. Here's a pic for "Mostly Wordless Wednesday"...my boys with mohawks. How cute are they???

Painting for Hailey

2010-07-04T20:13:00.002-03:00

I recently started following a blog called "Painting for Hailey". Hailey is a beautiful little girl with CP and this blog is written by Hailey's grandmother, Janet.

Janet is a painter. You can see her work here. All monies raised from selling her paintings go towards Hailey's therapies. Isn't that cool? What an awesome grandmother!

In her most recent post, Janet posted some paintings that she did OF Hailey. I personally think they are beautiful. Janet is currently trying to raise money for Hailey's Conductive Education fund. In order to do so, she is offering to paint a 16 X 20 canvas of your child for just $100!

I've already been in touch with her to get one done of Ben and Daniel. I can't wait to see how it turns out! And don't worry, I'll be sure to let you all know once it's done.

So...basically what I'm saying...is get your butts over to Painting for Hailey and get one for yourself!

My support system

2010-06-27T15:01:00.003-03:00

It's interesting. From pretty much the day that Ben was first diagnosed with CP, I've been frantically looking for support. I knew I couldn't travel this new path on my own and needed all the help I could get.

My first step was reaching out for help on a great twin forum that I was very active in called Twinstuff. They have a specific forum for medical and special needs. So I posted a question about CP and got a response from Kelly from Drake and Lulu. I was really clueless about the blogging world and she clued me in. I started out reading her blog and found lots more via her blog list. I thought I was in heaven. Here was a whole world of parents of special needs kids. There was so much great information...and not just information, but real life stuff.

Then I started wanting support from people "in real life" so I tried to start a support group in my area for parents with kids with CP. It never went anywhere. I told Ben's PT's, OT and doctors about it, but of course due to privacy laws couldn't actually give me the names of the parents I was looking for. I posted my information everywhere but not one single person got in touch with me.

So I pretty much resigned myself to the fact that my "support group" would be you guys....fellow SN bloggers. I was OK with that...I mean let's face it, you guys are a fantastic group!

And then over the past few months I've had a few experiences that made me realize that my support group is more than just you guys.

One afternoon a few weeks ago, I spent the afternoon at my mom's (without the kids) and we had a great talk. And I realized something. She's experiencing this too. She's going through pretty much the EXACT same emotions as me. Ben is her grandson. And she's had to deal with having a SN grandson. I'm not sure why I hadn't realized that this was affecting her too. And you know what? This might even be harder for her to deal with than me...you know why? Because she has to watch ME go through it! How hard must that be?

And you know who really knows how I feel? My husband. I mean he's going through this too. He's not a great communicator but once in a while we have a great chat...and we did just that just a few nights ago. And he opened up about what he finds hard about this whole thing. And it was great. It was so nice to come together and share our feelings about being a SN parent. Sometimes I feel like he's not that affected by this...but I know different now. He struggles with this too. He's just such a great Dad to our boys that I don't always see how he's struggling.

There are a few more people that I consider part of my support group such as Ben's therapists and now a few real life friends who have recently had their child diagnosed with CP. All of these people offer different things. Some offer information while others offer support simply by being part of this same club we've found ourselves in. But they're all INVALUABLE. I need all of these people. They're the reason I'm able to keep going. Keep being Ben's mom and Ben's advocate.

So what about you guys? Who's in your support group?

A much needed dose of perspective

2010-06-14T20:04:00.005-03:00

Yeah. Sometimes we all need a little perspective. And I got a healthy does of it this weekend.

I've been in somewhat of a "poor me" state of mind lately. I haven't been too down, but I've been having a tiny little pity party for the last little while. On Saturday, I remember complaining to Clarence (the hubby) about how difficult it is for us to do "normal" family things...mainly due to the fact that Ben can't walk.

On Sunday, a friend and I watched over 8-week-old twin girls for a few hours so the Dad and Grandma could get a bit of a break. Where's the Mom you ask? Well, the Mom is in intensive care at the local hospital. She went into cardiac arrest about a week after the girls were born due to some complications after her c-section. And she's only recently come out of an induced coma. And they aren't sure of the extent of her brain damage. And she's about to be transferred 2 hours away to a rehab centre, where she'll likely remain for 3 to 4 years. Yep, you read that right. 3 to 4 Years.

You should have seen this Dad and his little girls. It would just break your heart to see them. And their house was so cute. And all done up and ready for their girls' arrival. They were just a normal couple. Looking forward to starting their family and then WHAM! It's all changed. Life will never be the same again.

So yeah. The universe decided to serve me up a little dose of perspective this weekend. And ever since, I've been counting my blessings.

Let's rewind...

2010-06-09T14:21:00.003-03:00

As you all know, I have had 2 acquaintances-turned-friends have their child diagnosed with CP in the last few months. These are both twin mommies...where 1 child has CP and the other is typically-developing. Let's call them Charlotte and Darlene (not their real names).

Well. Charlotte's child only received the OFFICIAL diagnosis yesterday. A few months back, she was actually only told that her child "may have CP". I think this may have been a way for the doctor to soften the blow.

Charlotte sent me an email right away to tell me the news and more details on the appointment. I was really pleased that she got in touch with my so quickly. And she asked if she could use my "Facebook note" that I used to tell the world after Ben was diagnosed. She liked how it was written and wanted to modify it in order to tell "her" world about her son.

When Ben was diagnosed, I wanted the world to know immediately. But I didn't want to tell the "diagnosis story" over and over and over. It was just too hard emotionally...both on me and on the person being told. There were only 2 people that got the news from me and not via Facebook / email / word of mouth. Those 2 people were my parents.

I'm not sure exactly why I needed everyone to know so soon. But I guess to me, it was like taking off a band-aid...better to do it quickly if a little painfully and get it over with.

I've just re-read that Diagnosis Note for the first time in 20 months. WOW. Did it ever take me back! I think back to that time and am so thankful that I'm not back there. Feeling that pain. Knowing SO LITTLE. Feeling so alone in the world. The pain is not as sharp these days. I feel like I KNOW SO MUCH. And I definitely don't feel alone in the world anymore.

So I thought I would post this Diagnosis Note that I wrote way back then. In honour of my friend, Charlotte...who is brand new to this world of Cerebral Palsy.

Hello Facebook Friends.

As you all know, Clarence and I were blessed with twin boys in September of 2007 and we just celebrated their 1st birthday last weekend. It was such a great celebration with over 50 family members and friends celebrating with us.

On Thursday, we went to the IWK Children's Hospital in Halifax so the boys could have EEG’s (a test that measures their brain waves) and meet with a neurologist. The EEG’s were ordered due to a “shaky episode” that Daniel had a few weeks back. Fortunately, Daniel’s EEG showed nothing abnormal and Dr. Camfield diagnosed as “shudder attacks” which are quite common with babies and nothing to be concerned about.

Although Ben’s EEG showed nothing abnormal either, Dr.Camfield did have some bad news for us. After reviewing Ben’s medical history and examining him, Dr. Camfield told us that Ben has Spastic Diplegia Cerebral Palsy. In very basic terms, at some point (either during pregnancy, at birth, or shortly after birth), Ben’s brain suffered a lack of oxygen or a drop in blood pressure. This resulted in some brain damage that affects his gross motor skills. His legs are very stiff as is his trunk.

We have known for some time that Ben is developmentally delayed. Even though he is a year old (or 10 months corrected if you adjust for his prematurity), he only just started rolling and cannot sit unassisted. And he cannot crawl. He has been receiving physical therapy twice a week since early August and we do feel that he is making progress.

Dr. Camfield was unable to tell us what this could really mean for Ben’s future. Although Cerebral Palsy is not a progressive condition (i.e. the brain damage will not worsen over time), it is impossible to say what effects this damage could have. He was not able to tell us if Ben will be able to walk, run or play sports. It is simply too early to tell. He did tell us that this kind of damage should not affect his intelligence. We are also grateful that this has only affects his legs and trunk. He can babble, smile and laugh just like any other one year old. He is also really great with his hands and arms.

Cerebral Palsy cannot be cured. All we can do is treat the symptoms. This means continuing with his physical therapy, beginning occupational therapy and monitoring his progress. He is being sent for an x-ray of his hips and will also get an MRI in the near future. Apparently, Ben is at risk for hip dislocation and annual x-rays will monitor this. The MRI will image his brain (this will be done under sedation) and will give us more information as to the extent of the brain damage.

Needless to say, this diagnosis has been quite a shock to us and we are rapidly trying to get as much information on this as we can. We have found this summary of his condition quite helpful: http://www.livingwithcerebralpalsy.com/spastic-cerebral.php

We apologize for not making individual phone calls to inform our closest friends of Ben’s diagnosis. But, at this point, it’s just too difficult to go through the process time after time after time. That being said, we would appreciate phone calls from any of you that would like to talk to us. We really don’t mind talking about it and would enjoy hearing from you.

Love Cary, Clarence, Daniel and Benjamin

Strength in numbers - Update

2010-06-02T21:40:00.005-03:00

A couple of months ago, I told you that two twin mommies that I knew had had one of their twins diagnosed with CP. In that post, I asked for your help. I wanted to know what you would have wanted back in the early days after diagnosis. I wanted to reach out and help these moms, but I didn't want to overwhelm them either.

Well. In the weeks since then, I have connected with these Moms.

Initially we communicated through Facebook. In order to provide support without overwhelming them, I posted many photos and videos of Ben on my Facebook page. Basically providing them a way to look and find out about Ben, without having to ask questions.

CP awareness day was during that time. I posted facts and links about CP on my Facebook page over that weekend, in an effort to not just provide support to them, but to educate all those around me (and around Ben).

And they ate this information up. They devoured it. They shared it with their husbands and their families. They posted comments and asked questions.

Then they came out to a Mom's Night Out (sponsored by our Moms of Multiples Group) and they stayed late and asked questions. And we connected. We cried and we hugged.

After that, we had playdates. And shared even more information. About local programs and service providers. And our kids played. I even loaned out a few toys that were helped Ben to sit in the early days.

It's truly been amazing. The connection between us was instant. And forever. We have a bond that is unique and special.

I am thrilled that Ben will know other kids in a similar situation. With CP. With a typically-developing twin.

I am thrilled that Daniel will know other kids in a similar situation. Typically-developing. With a twin with CP.

But I am also happy for me. I needed this. At this stage, they can't really answer any of my questions about botox or serial casting. But that's OK. That's what I have you guys (and good 'ole Google for). But they understand what it's like to be in MY shoes. They get it. And that feels good.

Family Photo Shoot

2010-05-27T21:10:00.002-03:00

When we were in Florida, we had a professional photographer do a family photo session for us. I'm not sure how I originally thought of it, but it turned out to be a great idea to have our family photos done while on holiday. Plus...what a great way to capture the memories of that great time we had on our very first family holiday together.

Here's the link to the slideshow of our photo shoot. The password is cb050710 if you are interested in taking a look. The photos ended up being absolutely amazing...even though I thought the boys were a bit difficult and was actually a bit worried that we didn't get much of use.

The slideshow will only work for the next 7 days.

P.S. The other woman in the shots with the boys is our nanny. We like to include her when we get professional photos done since we consider her to be part of the family.