Friday, December 30, 2011
Sunday, December 18, 2011
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?
Wednesday, December 14, 2011
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.)
Tuesday, December 13, 2011
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 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.
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.
Tuesday, December 6, 2011
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.)
Thursday, December 1, 2011
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.")
Monday, November 28, 2011
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.
Sunday, October 30, 2011
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...
Wednesday, October 5, 2011
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!
Friday, September 16, 2011
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.
Wednesday, September 7, 2011
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.
Saturday, August 13, 2011
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"
"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?
Friday, August 12, 2011
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!
Monday, August 8, 2011
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...
Thursday, July 21, 2011
Tuesday, July 19, 2011
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.
Wednesday, July 13, 2011
Friday, July 8, 2011
Saturday, July 2, 2011
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!
We had such a fantastic family day!
Friday, June 24, 2011
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!
Tuesday, June 7, 2011
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.
Wednesday, June 1, 2011
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.
Monday, May 30, 2011
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.
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.
Tuesday, May 24, 2011
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.
Thursday, May 19, 2011
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.)
Saturday, May 14, 2011
Now...if only the weather would improve so we could actually go outside...
Friday, May 13, 2011
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.
Sorry Daniel...but Mommy couldn't resist taking this one!
Tuesday, May 10, 2011
Thursday, April 14, 2011
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!
Monday, April 11, 2011
Friday, April 8, 2011
Monday, April 4, 2011
Wednesday, March 30, 2011
Sunday, March 27, 2011
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.)
Wednesday, March 23, 2011
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.
Monday, March 21, 2011
Thanks Cheryl for including me!!
Saturday, March 19, 2011
Wednesday, March 9, 2011
Thursday, March 3, 2011
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.