Bad blogger

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

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.

Updates

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

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

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

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

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

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

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

Just a wee bit nervous

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.

Spasticity Management

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

Casting Update

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

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

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

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!

Botox, Serial Casting, and New Braces

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.