Brace Yourselves

Kemper got the DAFO's, I talked about that in my last post.  I was nervous about them and not looking forward to it, I tried to look on the super bright side, but I have a way with the opposite occasionally.

I took him to the orthotist's office and a giant man who looked like a cross between Mr. Clean and one of those old time-y muscle men with a mustache came in and fit him. He said they fit great, his shoes were fine, and he sent me on my way.

Well, there was the whole insurance/ CDSA/ pay out of pocket thing, which got straightened out, but there was a thing.  I'm still waiting on a refund check. Lesson to myself, always call before something new to find out if it's covered. But I digress.

He came home in them, didn't care for them, I worried and fretted. Kelly, Squish's PT came out and got him to do stuff he hadn't done before.  He works for a solid hour with her on standing, cruising, stepping, balance, etc. After that, we put him in the braces for an hour a day.  Now we're up to 3 hours a day.

He is pretty close to independent steps.  He's taken quick stumbling steps on his own, and he walks to the mailbox and back holding my hand.  He will walk all over the house holding a hand to give our dog treats. He'll cruise between furniture for books and toys and cheerios.  It's been pretty awesome to watch.  He's making mighty strides in his strength and stamina.  He can even stand up alone until he realizes he's not holding on to anything.

He's pretty much teaching me at every turn that my worrying is nothing compared to his resiliency and determination. He's like sunshine chasing my gloomy clouds of doubt away, even when he doesn't succeed at something, he tries again with a smile on his face.

I gotta tell ya, this Mommy thing is pretty cool. For your enjoyment, I've included a picture of Squish rocking his braces.  He's pretty adorable.

So until next time, I wish for you to find a little bit of sunshine to wash your worries away.

Surprises.

I've never been fond of surprises. Surprise parties invite me to be as awkward as possible and most likely un-showered. Surprise gifts make me almost as awkward. I give my husband a list for holidays and my birthday. He doesn't care for that part of my personality because he likes to surprise me. I hate I ruin it for him by continually asking if he stuck to the list. Most of the time I end up with presents early because of the questions. I plan our getaways, day trips, doctor appointments, all that stuff... it gives me the illusion of control and surprises knock me off my game. If we do something spontaneous, it was absolutely my husband's idea.

That brings me to surprise DAFO's. That stands for Dynamic Ankle Foot Orthosis. When Kemper was in the womb we were told many times that he would be a walker.  I believed it because he kicked me like he was rave dancing in my womb from the first time I felt him move until he was delivered. He wiggled and pushed and strained and ended up in a downward dog on his face in his isolette. He popped stitches because he moved so much. He crawls, he pulls up and cruises. Everyone talks about how he's going to walk and need little to no help. That was until he went to the Orthotics guy. Then the PT and this guy I just met decided he needed DAFO's.

That's a brace that goes up his shin, with straps. That was a surprise. And I didn't like it. The PT tells me, "It's temporary, when he's got this we'll cut them down to AFO's and then he'll move to a shoe insert." When you ask a PT why all of a sudden it went from shoe inserts to big honking plastic braces, it's best not to mention you fear punching people in the face for staring. That tends to confuse and frighten people who don't get me. Would I punch someone in the face really? I'm not ruling it out, but 99% of the time, I bet I could manage not doing that.

See I'm sidetracked. It's not even really staring that bugs me here. Some of it is the shock of the sudden change, which has been explained to me, but I'm still not a big fan. Then there's the whole make him wear them, look out for redness, blisters, and pressure sores. What if he hates them?

I had a cat a long time ago that I thought I could put on a leash.  I also thought I could train him to use the toilet, but that's a story for another time. Well, I would put this harness and leash on the cat and suddenly, he was rigor mortis like those fainting goats.  Would. Not. Move. He would have made a convincing stuffed animal in that situation were it not for the flattened ears and look of contempt in his eyes.

Is this what it's going to be like with poor Squish? I strap him in braces and he won't move? Or he goes tomato face and wails. Doing what you know is best for your child is tough enough, then add the fact it's not something I'm too thrilled about on top of the possibility that he may hate them and you have a pretty stressed out Mamma Bear.

They aren't even in yet, though, only ordered. So here's hoping I strap him in and he thinks they're the coolest. That would work. I've even tried to daydream to a Forrest Gump type scenario, we strap them on and he takes off. I'm aware that's a day dream. I'm fully expecting good and bad days. For the moment, I'm coming to terms with him needing braces. It's the only thing about him that would broadcast to the general public that he has Spina Bifida and that is the part that I think will be hard for me.

There will indeed be an update in the near future about how the braces are doing for him, how he handles them and if I punched anyone in the face I'll be sure to include the police report.

The "R" Word

This post is tough. Not everyone agrees with how I feel about the word retarded. I used to be one of those people. Things change.

When I was a kid, it was a thing to slap your hand and forearm against your chest in a flopping manner and talk with a forced speech impediment. That was supposed to be a burn, a joke, calling the person you were talking to retarded. I don't know if kids still do it, but the thought of it now makes me cringe.

I've said this before, I used to use the word retarded in such a way that it was a slur. When you take the word and use it out of context it takes on a negative connotation. Now people will say they would never refer to a child with MR as retarded. This baffles me. Yes, they have changed all the labels, do you know why? Because the word retarded has taken on such a negative connotation. Now it's a put down, a way to call someone stupid, to refer to yourself as forgetful, etc.

The odd thing is how vehemently people will argue to be able to continue using this word in a hurtful way. Arguing syntax, arguing definitions, posting the dictionary entry. The word has it's place in engineering, mechanics, music, etc. Not to describe how silly you feel for forgetting your lunch. Not to call someone stupid. I suppose this is piggy backing on me posting a blog link on my wall to "Herding Cats." It's a blog written by a woman whose daughter has MR and how people use the word retard or retarded in an insensitive way. I linked it to my facebook and all Hell broke loose.

My son doesn't have MR.  He's got Spina Bifida, hydrocephalus, a VP shunt, a neurogenic bladder, hydronephrosis in one kidney, reflux, texture issues with feeding, a hydrocele (hernia), and he lacks the dorsi flexion in his feet he needs to walk properly. He's already been referred to as retarded by ignorant people. He has had multiple surgeries, has OT, PT, has had UTI's, been hospitalized, and goes to the doctor so much that everyone at the front desk knows him. He has to fight so much, just like all special needs kids. These kids fight EVERY. SINGLE. DAY. for things most people take for granted. Why do people want to add to their fight by throwing around a word that can cut so deeply?

That's why I'm so passionate about ending the use of the word retarded as a put down or way to describe how slow you are getting started in the morning. I'm a special needs mother and I want to advocate for the whole community.  

Why would you argue to continue being able to say something that can be so hurtful? This is the part that truly confounds me. Is it selfishness? Is it the perception of being told what to do? I don't understand it. I can't imagine anyone giving an explanation that would justify this in my mind. That's where I leave this post, I drew my line in the sand and it makes me mad as Hell that we even have to have a line. If you disagree with me, that's fine for you but this is not an agree to disagree situation for me. This is a deal breaker. I'll not suffer fools on this issue.

A Year, Summed Up.

I've been really neglectful of my blog and while my dear readers, all 3 of you, may have given up on me, I've realized that I need this.  Getting my clunky thoughts out is therapeutic for me.  Here we go.

Squish turned a year old already.  I don't know where the time went.  I picked up a tiny baby, held him close to me, and when I went to put him down he had 6 teeth and liked to smack my boobs.  He is a gibber-jabbering hedonist who loves to cuddle.  He can get from the bathroom to the kitchen dog door in less than 20 seconds, little tushie swinging with the effort of his all fours crawl.  He's gorgeous.  He's sweet.  He's kinda whiny and clingy.  I love him.

Watching him learn and grow has been wonderful.  Getting through the hospital stays, the CT scans, the UTI's, the surgeries, and that sort of thing has been crappy.  He was a vomit fountain for about 4 months with reflux.  I may as well have been doing laundry for a small hotel.  Through it all, he's kept his easy going demeanor.  I wish I were as laid back as Kemper.  In the face of all adversity he's had, he meets it with a smile and just won't give up.  Much like the boob smacking.  I can stop him and say no all day long, he just grins at me and smack, smack, smacks.

There are a lot of people I couldn't have made it through the year without.  There's no way I can properly show my appreciation to them.  So, I'm using this blog post to repeat some of the best advice I've gotten through the year and give some of my own to people who may be in the same spot I was last year this time.

Great Advice: (As I see it.)

Have a support system.  Yeah yeah, everyone says that.  It's true, you need it.  But you need people who are familiar with Spina Bifida.  So, if no groups are available locally, go to the internet.  It could take almost a year to weed out the people that you ONLY have SB in common with and make some friends.  I'm so glad I did.  I have some true homies.  There are groups on babycenter and facebook for Spina Bifida.  Hell, I even run an SB group on facebook!
I'm telling you it's the friends you make that will be your rock.  Sure your family means well, sure your friends are supportive, but these people know what you're going through.  They've been there and most of them are willing to offer advice and support.

Do not let a digitized ribbon confuse your heart.  I know lots of people that I didn't know before I had a baby.  Many of them are new moms like me.  Many others are people I met through SB resources.  Some of them are just ridiculous people with nothing to contribute but sucking the very life out of you.  Don't let them.  Come SB awareness month when they plaster their facebook with ribbons, don't feel like you owe them something.  You don't.

Don't let this change who you are!  Your child needs you to be you.  Don't go changing because you think you have to in order to be a great parent.  A great parent is made by someone who is secure in who they are. Also, you can't live wallowing in "why me" or "my child can't..."  Keep living like you did before, enjoy life so your child can too.  A miserable parent makes for a miserable child.

Trust your instincts.  Yeah, the doctor at your pediatrician's office has a degree.  Yes, you should trust him on lots of things.  But when it comes to Spina Bifida stuff, call the neurologist, urology, ortho department familiar with your child's care!  Remember that you know your child better than the doctor who sees him for 20 minutes every so often.  

Your spouse is not you.  Sounds simple, but it's all too easy to forget.  I was diving headfirst into research, books, scientific data, joining groups online, trying to reach out to local people.  My husband mostly relied on the doctors and me for information.  At first it upset me, but I realized that he deals with things differently than I do.  He was willing to take the information as it came.  I wanted to know everything NOW!

Therapy is OK.  I'm in therapy.  In the same vein as my need to have all the information lined up for me, I hate surprises, and I have an anxiety... problem.  Because I'm high strung and a little scary sometimes.  So, therapy is a great idea for me.

Know your insurance.  Seriously.  Stay on top of it.  There's a million and one things you have to do every day, I know.  But every dime counts.  Don't let a misfiled form or something take money away from your family.

Use a beach towel.  If your kid spews like a geyser... screw the burp cloths, move up to beach towels.

Alright.  My little bag of wisdom is just about empty.  Just remember above all else, your baby is just that, your baby.  No matter what challenges lay ahead of you.  You can do this because you really have no alternatives.  You'll rise to meet whatever comes up and if you're lucky, you'll make some damn fine friends along the way.

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Dear Universe, That Horse Is Dead.

In other words, I get it.  I understand that you can't plan everything to the letter and expect it all to go off without a hitch.  I've gotten that lesson in spades by now and I think I'm learning to roll with what comes.
The thought that this is all preparing me for something bigger kind of makes my head hurt because I don't like it when plans go awry, but I'm trying to accept it.
Recently, my family had plans.  My sister had plans for a great summer with her family, enjoying the pool with her kids and doing what she loves, running.  Instead she had to have shoulder surgery after being injured by a student at the school where she works.  She's coping with a lot of grief in this situation, she is grieving her summer of carefree fun, her ability to be independent, her feeling of safety at work, her feeling of value from a certain co-worker, and more.  I can't begin to tell you how frustrated and upset I've been on her behalf, but that doesn't begin to cover what she's been feeling.
I tell you this because a couple of weeks ago, we had a big family vacation.  We do it every year, my sister and her family, my Dad and sometimes his fiance (she couldn't come this year) and my family.  This year, my sister had to sit in a therapy chair that did PT on her arm 3 hours a day while hooked to a tins unit.  This year, she had to ask me to put her hair in a ponytail, she couldn't hold her nephew other than posing for pictures, and she couldn't play with her children.  Maybe the Universe is taking her to school too, but I it sucks for her!  Because on top of that, we had an earthquake that shook the condo we rented and left us scrambling to get in touch with friends and family that were in the area where the quake hit.  Because if we felt it at the beach in North Carolina, we couldn't imagine what it was like where the quake was centered.  Thankfully, we reached everyone in great shape.
Kemper was great when we arrived, but no sooner had we unpacked he started getting sick.  He was congested and vomiting without a fever.  We treated him over the counter, but I have to admit, I was so happy it wasn't our carpet he was anointing, because it was nearly constant.  He improved over a couple of days, but we were new parent train wrecks.  Do we take him home to his pediatrician?  Do we wait it out?  We worried, fretted, took it easy with him, and worried some more.  Then all of a sudden, he improved to the point we thought we could just relax for the rest of the week.

Then... Irene caused some issues.  We had to end our vacation early because the island we were on was under mandatory evacuation orders.  My husband went home to our dogs and house, which was just out of the projected path of the hurricane, and I took Kemper and fled inland to a motel room.  I spent two nights there wondering if my husband and home and dogs were ok while trying to keep up with what the storm was doing.
Walking in the front door was so very sweet it competed with my return after seven weeks at Duke.  Home.  Ah.... a breather.  Then full force sick baby again.  He's been back to the doctor and had an Upper GI which of course, I have to wait through the holiday weekend for results.  Of course.
So in my defense, I'm trying really hard to roll with the punches and continue to throw the plan out the window, but it's not easy.  So not easy.

You Know What Assume Means!

Being proven wrong. Not something people typically enjoy, but as one of the many Moms of a child with Spina Bifida, having my son exceed expectations in the simplest of things can be joyous. Many of the Moms I've met will post a picture of their child with the caption, "Take that, Spina Bifida!" Seeing these pictures makes my heart sing, fills me with hope, and allows me to celebrate with their family.

There have been so many instances where people have been wrong in their expectations with Kemper. I relish in these because he's busted through so many assumptions and limitations that people have projected on him based on the term Spina Bifida without considering him as an individual.

The perinatologist who told us about his diagnosis said he'd probably be paralyzed and have some mental retardation. She said his lesion was affecting 5-6 vertebrae and was very large. This is not true for my son.  He has movement and sensation in his legs and feet, he's right on track developmentally, and the lesion was less than a centimeter in diameter.

Nurses in the NICU told us that he would always "ooze" poop because of the nerve damage. That he would always vomit because of neurological issues. They didn't take into consideration the antibiotics he was on that loosened his stools or that he could have reflux, which he does.  When he was admitted to the hospital locally due to a GI virus, the nurse thought she was in the wrong room because he was kicking. She assumed he wouldn't be able to move his legs. 

His most recent accomplishment that says, "TAKE THAT!" He can bear weight on his legs.

    

Talk about having your heart soar. We were on cloud nine for quite some time on that one! 

He teaches me about making assumptions too.  We took him to the doctor a couple of days ago and I undressed him so he could be weighed.  I was telling the doctor how terribly constipated he was and as if on que, he pooped.  On their wall.  I still don't know how the poop ended up on the wall, but I was mortified. After we got him cleaned up I picked him up, he was still naked, and I was talking to the doctor about how he doesn't pee on his own anymore.  That's when he peed down the front of my dress. Talk about a flair for the dramatic to prove me wrong and teach me about making assumptions!

Every kid with this diagnosis is a kid. An individual. We take something out of them when we assume their capabilities. The only thing I really know for certain is that Kemper has my heart on a string.