Blogging rocks!

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

I ranted at a pregnant lady

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

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

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

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

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

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

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

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

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

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

"The babies are going to be fine."

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

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

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

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

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

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

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

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

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

Hopefully I didn't scare the pants off her.

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

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

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

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

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

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

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

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

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

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

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

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

The scoop on SDR (cross-post)

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

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

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

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

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

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

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

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

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

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

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

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

St. Louis Children's Hospital

The deal with Ben (cross-post)

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

(Photo by Megan McKinley Photography)

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

It is important to remember these things about spastic CP:

 

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

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

 

PubMed Health

St. Louis Children's Hospital

 

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

A new blogging adventure

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

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

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

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

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

CP and personality

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

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

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

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

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

I can only hope.

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

(Photo taken by Megan McKinley Photography.)

On not being alone

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

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

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

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

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

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

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

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

How cool is that?



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