By The Time He's Two...

The day after the ultrasound that confirmed Kemper had Spina Bifida, we went to see Dr. Culler in Chapel Hill, NC. He had previously worked with the MOMS study in which the repair surgery is done in utero instead of after birth.Our Perinatologist sent us to him for a second look and he said the words that helped me pull my broken heart and shattered dreams back together.

"By the time he's two you may never even know he had Spina Bifida."

Not a guarantee, not a certainty, but hope to cling to that my baby would have a shot at typical.  Thing is, back then I didn't know much about Spina Bifida so I wasn't sure what I was hoping for. All I knew was that what the Perinatologist had to say had been the most frightening, disheartening, terrible future for our baby.

Turns out, that's pretty normal when you're delivered the Spina Bifida diagnosis.  I believe it's a combination of CYA (cover your ass) and outdated information.  It takes a very long time for the standard of care to change and for information to be up to date for doctors that don't deal with Spina Bifida every day.
Dr. Culler gave us a better informed, more realistic set of expectations because his career included ground breaking surgery on a fetus's spinal cord.  I'm not saying that's what it takes to get informed doctors, but it feels pretty close to that sometimes.

Anyway, let's fast forward two years.  Turns out that Kemper still noticeably has Spina Bifida and that is OK. Lots of things have changed, lots of things are better than we ever hoped, and I've made some fantastic friends in the SB community.  I will say this, Kemper has very high functioning for Spina Bifida, his lesion is sacral, and he can walk.  So, I suppose on the outside if you look at him, you see a typical child. But he's got a ton of stuff going on medically and developmentally.  Again, not as much as most kids with SB, but he's still got it happening.

I continue to digress.  My point is this, if you told me two years ago that there would be a point where I could cath him in an airport bathroom with people staring and not bat an eye, I would have called you a dirty liar.  If you told me that I would get through sending him to the OR 5 times without fainting, I wouldn't have believed you. If you said, you're going to get to the SB Conference and meet all these people who've supported you in your journey, I would have said Kemper was far too fragile to travel. He flew twice this year and took countless car trips with me. He fell on his face, slammed his fingers in doors, threw tantrums, and all kinds of other stuff too.

This is our life. Kemper is our world and he is living. Yeah, he's got Spina Bifida, but in a way, that doctor was right. It's not the first thing we think of anymore. Yeah he wears braces, yeah, he's got a shunt, etc, etc.  No big. I can't believe I reached this point, so I guess it is a big deal. I want all the newly diagnosed parents out there to know that this place exists.  I'm settling in and grabbing a drink with an umbrella in it, I'll see you here in a couple of years.  Until then, if you need me, I'm there.

                                                            Happy Birthday, Kiddo. :)

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.