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.")

Still waiting (plus some random stuff)

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

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

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

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

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

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

Before

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

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

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

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

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

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

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

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

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

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




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

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

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

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

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

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

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

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

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

And now the wait begins...

Christmas Cards

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

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

Do you live here too?

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

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

Break

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

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

Because really life is good.  Really good.

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

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

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