Monthly Archives: October 2015

Nearing the Finish Line

BabyGirl is almost done with her casting. Today she had the 2 week post op cast removed (the second after surgery, that she has had on for two of the three weeks since surgery) and was measured and cast for an AFO. Then to see Doc who looked her over again, saying all was looking good. She’s back in a cast for another couple of weeks while we wait on the AFO. She has permission to weight bear!! So the walking boot is back on and she’s off and running. Hallelujah! We’ve been waiting for THAT! I’m getting rather tired of the plasma car and helplessness 😉

Post-op and MRI

Hey! Look at that, I made it back!

BabyGirl had surgery Sept. 29, 2015. All the technical terms that get thrown around and the way it changes just a little bit each time we meet…well..what actually happened has gotten lost in translation. But she had surgery on her foot to lengthen and release tendons to work on achieving a flatter foot on her right side.

She had serial casting for three weeks prior to surgery. First she picked out a purple cast, because purple is her favorite color. Mr. Will forgot to offer her sparkles though. He felt very bad that he didn’t remember them until she was walking out the door. So he told her to remind him next time and if she wanted them, he’d be sure to hook her up. She remembered. So the second time she had pink camouflage with purple sparkles. Mmhmm Girly girl. Then she surprised everyone by getting dinosaurs.

Then surgery.

They were slow getting her back that day, she was getting hungry. They finally came for her, over two hours after anticipated. Everything went well. She was soon happily chugging down apple juice and throwing back french fries in her overnight room.

She never complained of any pain or discomfort. All night. She did great! Oh and she had a bright pink cast put on that time. We didn’t see her incisions until a week later at follow up. Again, all looked well and was going great.

Throughout the initial casting she was allowed to wear a boot and walk. But not after surgery. We were sent home with a wheelchair, which she figured out very quickly. However, he preferred mode of transportation was the plasma car. If you don’t know what that is, Google it. They’re awesome! We already owned one from a few years ago, it has gotten much use. But the week before surgery I happened to see one at a thrift store so I snatched it up. Then it dawned on me how brilliant this was. She can scoot all about the house on it on our wood floors.

So now we have a few weeks of post op casting with NO weight bearing. Plasma car is a life saver!

Now going into this whole serial casting/surgery thing, doc mentioned getting an MRI just to check if anything was going on there affecting this foot. He was confident enough that it wasn’t, so continued with the surgery. But concerned just enough about everything that he put a call in to her neurosurgeon who concurred and thus the MRI was ordered.

That’s what we did today. Went to one hospital for the sedated MRI. This girl is a RIOT ‘drunk’ by the way. Most don’t see the really funny side of this girl, certainly not doctors and nurses. She’s all quiet and serious around them, whereas at home she’s wild and free and chatty. But waking up from sedation…she was something else. I laughed so hard I had tears streaming down my face. I mentioned the plasma car…we bring that to doctor’s visits and such so she can get around on her own. So, we had that with us, but obviously, after sedation, she wasn’t going to be driving it back out to the van. First a nurse mentioned grabbing a wagon. My daughter just mumbles ‘no, no wagon’, the nurse didn’t hear. Nurse comes back after a bit saying she couldn’t find a wagon, so “we’ll have to use a wheel chair” and that’s when my daughter had the room rolling. She whipped her head around and shouted in drunk redneck fashion “I don’t need a wheelchair, I have my plasma car” with an indignant flair. ‘Sweetie, you’re too drunk to drive, we’ll get you a wagon to safely ride’ She continued to blabber on and laugh and crack herself up with little things. She noticed she was dizzy and wondered why then would break out in laughter. Oh goodness she was fun to watch.

Anyway, we finally made it downtown to meet with the neurosurgeon who in typical fashion plainly stated the facts and was on his way. Pretty much that fast.

Our girl has a very complicated case of lipomyelomeningocele. Doc says it is so complicated, you couldn’t drag him back into the OR kicking and screaming, to work on her, unless we told him she was drastically falling off the charts neurogenically speaking. But she’s not. She’s doing just fine. She gets along fine, there have been no changes or set backs. She’s still progressing and getting along just fine. So he says no surgery. He says he’s worried going in would cause more harm than good and if she’s already fine…leave it alone.

So, no surgery, that’s a good thing.

But that ‘complicated case’ thing is kinda hanging with me. What does that mean for her future? Right now it doesn’t seem as though that means anything negative, it’s not had any adverse affect on her. But will that always be the case? Will things just look like a mess down there…but ‘miraculously’ manage to keep functioning well? I’m not real sure what that means. So, I guess I can mull that over for a while and if questions arise, write them down for clinic in June.

Until then…two more weeks in this cast then she’s fitted for a new brace, with my not so favorite folks…but doc swears by their work and we trust doc so I’ll just be bold and request that the techs go back outside and air out after their smoke and wash their hands before touching my daughter, should the need arise again.

Spina Bifida Awareness Month 2015

I often feel like an uneducated idiot when asked about Spina Bifida, what it means for my daughter.

You see, Spina Bifida isn’t ‘cut and dry’ like other defects, diseases, or what have you. It isn’t as simple as “this means she will need a kidney transplant by age 4” or “She will never see out of her right eye, because there isn’t one in the socket” No, it is not nearly so straight forward as that.

My daughter has a lower level lesion…it is in the lower L or sacral region. That means, any and everything from that point and below, could have been damaged in ANY capacity. Another child could have the same level lesion, yet one could have complete bladder control, and the other can’t feel a thing, constantly leaking. One may have full use of both legs, the other may not be able to control their left with any accuracy at all. One may be able to walk independently, the other may need braces and/or a walker.

There’s a lot of wait and see involved with a Spina Bifida diagnosis. We wait to see if they can move their toes at will, their legs. We wait to see if they will be able to sit and crawl, pull to a stand and take a step. We wait to see if they can control their bladder and bowel, if they can hold it, if they can release at will.

So someone asks me, what does Spina Bifida mean for her future..and I cannot really answer them. Not because I know nothing about my daughter’s condition, but rather because I know more and more about it all the time and that tells me more and more, nothing is certain. Nothing is written in stone. Nothing can be fully determined. We are all along for the ride.

I’ve heard of others who were told their child would never be able to walk, and now they are running and playing on sports teams. Even their doctors were along for this ride of uncertainty.

Others who were told their child would have no movement in their feet, surprise them all by moving the foot and pulling to a stand.

I guess one thing we can say with certainty, is you can never tell a Spina Bifida child they ‘cannot’ or ‘will never’ do something, because they WILL prove you wrong.

They cannot be put into a box. Not with their diagnosis, not with their lives and abilities. Every single one of them is different. Every single one of them is strong.

And their parents.

I look around and see the parents of other children with this diagnosis, and I see immense strength, courage, and determination. Parents who chose life and to love. And have ended up being the ones with their socks blessed off and standing in awe and wonder of these determined kids. Who in turn give the parents more strength to keep doing what they’re doing. To withstand the therapy appointments, the doctor’s visits, the surgeries, the sleepless nights of worry and fret, the depressive feelings of failure.

We may not know what ‘the future’ holds for our children, but we are learning every day how to better help them. We are learning more about ourselves and our children, each day.

Surely I am not the only parent out there that feels this way. Please do not think I’m uneducated or not asking questions and getting answers about my daughter’s condition simply because I cannot answer your questions. There just aren’t answers to everything right now.

This is part of why awareness is so important. Others need to understand this uncertainty, this broad spectrum kind of diagnosis. Spina Bifida. It sounds like a clear diagnosis with specifics, but it really isn’t that simple. So join us, the parents, in learning about this birth defect and spreading the word.