Tuesday, January 31, 2012

Shriner's - Day 1 (cross-post)

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

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!

Monday, January 30, 2012

Moving Day! (cross-post)

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

Sunday, January 29, 2012

Photos (cross-post)

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

Saturday, January 28, 2012

72 hours (cross-post)

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!

Friday, January 27, 2012

So far, so good (cross-post)

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, 9am He 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, noon Around 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!

Thursday, January 26, 2012

Recovery (cross-post)

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!

Wednesday, January 25, 2012

Waiting game (cross-post)

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.

Tuesday, January 24, 2012

Surgery Eve (cross-post)

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.

Sunday, January 22, 2012

Holding pattern (cross-post)

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!

Saturday, January 21, 2012

So it begins...(cross-post)

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!

Wednesday, January 18, 2012

What Ben knows (cross-post)

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.)

Friday, January 13, 2012

What we know so far (cross-post)

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!

Monday, January 9, 2012

We have a date!

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!

Wednesday, January 4, 2012

Reflecting on 2011

(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.


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.


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.

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.
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.
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!
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. 
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.


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.


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).


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.


We're still waiting for a surgery date.

Yeah...more waiting.  Waiting is hard.


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!