Monthly Archives: October 2013

More Changes Ahead

Just back from an appointment with the orthotist. 

After working with a physical therapist for the last several months and trying Leap Frog AFOs as well as TheraTogs, we hadn’t gotten far. LilBit still wobbles a lot. She cannot stand still in one place, constantly moving to maintain balance.

We’ve been seeing a new therapist since our move and she has been more proactive, which I have liked. She suggested a new brace. One unlike the ‘one for all’ Leap Frog variety she had been using. She was talking about a ‘just for her’ molded brace, similar to before we used the Leap Frogs (butterfly brace, remember that?).

Same company as before, but a different guy. Already, my ‘vibe’ of this guy has been better than the first guy. We have made it quite clear we will not work with him again. At all.

Anyway, so, we got in there today under the impression she was to be checked and fitted for a brace to correct her ‘c foot’ on the right. And again, once it came time for casting, two were mentioned. So we backed up and talked about that and the orthotist backed off and we settled on just one brace. Sooo….a little bit of ‘car salesman’ stuff going on there, in my opinion, but like I said, overall, this experience was better than before. (by all means, ask me in a couple of hours and again after a day or two…but I think this is a better experience this time)

LilBit will soon be sporting a purple orthotic. This will be a small one, similar to the LeapFrogs, but specific to her foot and needs. It will hopefully help stretch her foot out so that more surface comes into contact with the floor when walking, rather than catching just the side of her foot, due to that high arch/c-shape.

Again, she wasn’t thrilled with the whole process. But then again, strangers! She’s having another phase of ‘stranger anxiety’ here lately. I mean, all of my kids have been on the shy side, but, I think this is just that ‘stranger anxiety’ thing and hopefully will fade again shortly. But for now, it’s making things rather difficult and she wasn’t too eager about her appointment today.

However, we managed. As we came down the hall to our room, the orthotist caught us in the hall so he was able to take those few moments to see her in action and make an initial assessment. Good thing, because she wasn’t overly cooperative once back in that room. She didn’t improve with the therapist came in and *sure* didn’t improve once the orthotist came in. But anyway, we managed. She played her games on my phone while he did the casting, stopping only briefly to glance down at what he was doing as he had to change positions to cut it off when finished.

He was able to get her foot rather straight for the casting, so, I’m really hopeful that will help LilBit. Now…let’s hope she doesn’t resist wearing it. In the end, she does what we make her do. But, I don’t want for her to whine and fuss when I say it’s time to get her brace and shoes on, ya know? I’d rather it just be common place again “Let’s get ready to go” and she brings socks, brace and shoes.

And hopefully this isn’t too much of a change to cause her to get frustrated and shut down. I highly doubt that will happen, but still, once someone mentions it, you can’t help but think it from time to time.

I’ll try to remember to post pics of the PURPLEness once it gets here.

Then begins the shoe shopping challenge, again. She’s been in need of shoes for a while (due to wear, mind you, not because her foot has grown any :-p) but I’ve been putting it off because I wasn’t sure what we were doing about bracing needs…with clinic coming up in February…I didn’t want to wait THAT long, but, ya know.

So, that’s where we are today.

Awareness Month 2013

Once again, October rolls around. Once again I am reminded of the permanence of my daughter’s condition.

October is Spina Bifida Awareness Month. A time dedicated to sharing and educating others of this birth defect that affects around 1,500 babies every year.

What IS Spina Bifida?

Spina Bifida is a neural tube defect. A phenomenon in which, around the 28th day from conception, something goes awry.  At this crucial time of conception, the neural tube is developing into what is later known as the spinal cord which we all know is surround and protected by the spinal column. However, in a baby with Spina Bifida, that doesn’t happen. For whatever reason, this development doesn’t go ‘as planned’ (I use quotes there because it is all still going according to His divine plan 😉 ) and a gap is left in the spinal column. Often, vertebrae are also deformed.

Most of the time, when people think of Spina Bifida, they immediately picture the open lesion on a newborn’s back. That is all people know about Spina Bifida. That it has something to do with the spine, the babies can’t walk and they were born with a hole in their back.

But that is not very accurate. Yes, babies born with a myelomeningocele are born with a hole in their back. The place where the spinal column did not fuse together and the spinal column nerves are thus exposed. However, not all Spina Bifida cases are the same.

There is also the occulta variety, which means hidden. These people often do not even know they have Spina Bifida and show no signs of having a defect. They go on with normal lives.

Then we have the meningocele variety in which a fluid filled sac (cyst) protrudes from the spine. However, no nerves are involved in this. It is ‘just’ an opening in the spine. The cyst is removed and development is usually unphased.

So now you are probably wondering which one we are dealing with. Well, we complicate things even further as my daughter has something not on the list. We always have been ones to buy the odd year of a vehicle that changed a part midway through the year or some such thing. In like manner, my daughter had to do her own thing with her neural tube defect.

BabyGirl has what has been labeled lipomyelomeningocele occulta. I’ll give you a moment to try to piece that together on your own.

This means, she had a fatty protrusion (lipo) covering her lower spinal (sacral) region. This is what drew our attention to the issue. Once that was checked into, it was then determined she had the myelomeningocele variety (spinal nerves protruding outside of the spinal column) which was then considered occulta because it was all hidden by the cyst and the lipo.

So, she was not born with a gaping hole in her back. There was no visible sac outside her body. She just appeared to have a fatty lump atop her bottom.

She had surgery when she was just a week old. This corrected the defect. The neurosurgeon went in, opened the lipo, got down to the delicate, intricate nerves of her spine (hello? complete control over the entire body!) and gently placed them back inside the safe covering of her spinal column and closed everything back up. She also endured another surgery a week later due to an infection in the site wound.

Surgery Scars
Surgery Scars

What does this mean for us now?

It means we have a daughter who is slower to walk and run. She doesn’t run like the other kids her age. She cannot stand on her tippy toes. She can only just barely, momentarily balance on one foot. She does not navigate stairs ‘left foot, right foot’. She is nearly three and nowhere near ready to potty train. Her feet are two different sizes. Her legs are slightly mismatched. One foot turns starkly inward with an over-pronounced arch.

One full size difference. Also the tone in her calves is quite different.
One full size difference. Also the tone in her calves is quite different.

 

You can see the deep wrinkles where her foot curls in on itself and the massive arch.
You can see the deep wrinkles where her foot curls in on itself and the massive arch.

It also means we have a child who has shown us the real meaning of empathy.

It means we have a child through whom we have seen the hand of God.

And the love of His people.

Through her eyes we have seen and experienced so much joy.

Slightly out of focus BabyGirl
Slightly out of focus BabyGirl

So, I have a child with Spina Bifida who can walk and talk and run and play. She can roll and kick a ball. She can bounce on her knees. To most, the defect is hardly noticeable.

But it’s still there. It will always be there. Every day I see the scar on her back, I am reminded, that will likely not be her last. You see, an ongoing problem with Spina Bifida is that the cord often retethers. Which means, in a normal person, the spinal cord floats freely within the spinal column. This allows one to grow and stretch and develop normally. However, in a Spina Bifida patient, the cord will reattach itself using the surrounding tissue. Thus preventing that free movement that is so necessary for growth and development. This re-tethering will cause pain and stiffness in the legs and feet. Toes will curl up and legs will become weak. It is not a guarantee, but a quite likely probability that her spinal cord will try to re-attach itself and she will need another surgery to disconnect that.

Every day, when I see that inwardly turned foot, the scuffed toes and calloused soles, I am reminded that my daughter is not ‘normal’. She will never be.

When she was just beginning to navigate stairs on her own, this summer.
When she was just beginning to navigate stairs on her own, this summer.

As I said, she is nearly three and we are nowhere near potty training. A skill that was mastered by most of my children by this age, we have not even begun. She’s not there. She doesn’t even feel it. There is no sensation, therefore, there is nothing to train. One must have awareness before they can be trained how to use it. BabyGirl lacks awareness.

She will always have some degree of bladder and/or bowel malfunction. The extent of which we do not yet know. But for now, she is prone to UTIs (urinary tract infections) and is on a preventative medication to hopefully keep those at bay. She will almost certainly have to self-cath as she gets older. Which means, she will use a catheter device to eliminate urine from her bladder so that it does not reflux up into her kidneys and cause a full on kidney infection. This means, in addition to potty training, I will have to teach her how to self-cath. She will have to deal with that the rest of her life. She also lacks control of the bowels. She cannot bear down to eliminate. It just happens. Her body voids it on its own. She is unaware. We do not know yet what kind of control she may yet gain over that function. Something else I will have to teach her to deal with.

Every day, I look at this little girl and feel immensely blessed.

Her face looks terrified, but she was squealing with delight.
Her face looks terrified, but she was squealing with delight.

I was given a gift like never before.

I have been given new eyes to see the world.

I am eternally grateful.

For my daughter.

For Spina Bifida.

Spina Bifida isn’t just an open lesion or fluid on the brain, wheelchairs and braces, diapers and wobbly legs.

It’s kids, like mine, with beautiful faces and lovely hearts, teaching the rest of us how to love and how to live.

My face of Spina Bifida.
My face of Spina Bifida.

If you would like to learn more about Spina Bifida, please follow these links:

http://www.mayoclinic.com/health/spina-bifida/DS00417

http://www.marchofdimes.com/baby/spina-bifida.aspx

http://www.spinabifidaassociation.org/site/c.evKRI7OXIoJ8H/b.8277225/k.5A79/What_is_Spina_Bifida.htm

 

Educating yourself on Spina Bifida will not necessarily prevent it from happening to you and yours, but at least you can be prepared and have a better idea of what’s going on when it does. Educating yourself can help it seem not quite so scary. Educating yourself can help you as you encounter others afflicted by this birth defect.