Thursday, October 18, 2012

Anna has Spina Bifida. For Real.

Some kids (and adults) with Spina Bifida look "normal" to those who do not know they were born with SB.  These individuals with SB do not require the use of a wheelchair, leg braces, or some other form of walking aide.  Their disability is invisible to most people. 
Our daughter Anna has Spina Bifida.  And to most people her disability is invisible (most of the time).  Believe it or not, it is even easy for some family members to forget she has SB - they may see her once a month or a few times a year.  And, until they see Sarah or me take Anna to be catherized, they see her as one of the girls.  This is good.  I like that she is looked at as "normal". 
We are in many ways "lucky" that Anna's SB is not as severe as others with SB.  Anna has full mobility of her legs - no leg braces, no crutches and no wheelchair needed.  But...her leg strength is not all there.  This, combined with the fact that her legs are so short, makes Anna prone to lose her balance.  She tires easily as well.  All these factors contribute to her falling more often than other children her age.  
She took one of those falls a couple of weeks ago under my watch as we (Anna, Allie, Emily and I) were walking from the van in the school parking lot to the entrance to the school.  In the end, it was not that big of a deal.  But I felt TERRIBLE.
For me, it is sometimes difficult.  I want to give Anna room - I want her to challenge herself.  On the other hand, I obviously want her to ALWAYS have the support she needs - whether it be a hand to hold or a  shoulder to cry on. 
I did not have her hand when she fell and hit her head.  I let my guard down and she fell.  It was kind of ugly.  It was a fairly small cut on her forehead but there was a lot of blood.  Emily and Allie stopped looking because they didn't like the sight of it.
So, this all happened at the start of the school day.  Long story short is that we ended up at a local emergency room to get the cut looked at.  The same emergency room Sarah & I had taken Anna to about two years ago when she lost her balance and hit her head on the corner of a wall in our home.
This is Anna waiting for the staff to stitch her forehead.  She is making the "ducky" face that only Anna can make.

It was interesting to be there when they put the stitches in.  It was obvious that the staff (a doctor and 2 nurses) was not expecting Anna to cooperate.  They wrapped her whole body (legs & arms) tight in a sheet and assigned parts of her body to everyone.  "I'll take her legs, you hold her arms."  The doctor said "I'll hold her head in place." "Dad, pull right up and sit close."
Anna flinched a couple of times and gave the "I don't like what they are doing" face.  But, other than that, she was still and didn't cry at all!  Yes, it was more painful for me than it was for Anna.
After the stitches had been put in:

The ducky face. Post-stitches:

Sarah tells me I did the self-pic incorrectly.  It was a mirror shot:
The stitches stayed in over the weekend (5+ days) and again Anna handled having an egg on her forehead like a champ.  A wince or too when we changed her band-aid but I think everyone else felt worse about the whole thing than Anna did.
Having the stitches taken out by the pediatrician was almost more eventful than the ER visit.  It was a Monday morning appointment so I took Anna (and Allie and Em came along with us).  Oh my...the questions the three of them were firing off on the ride to the pedi!!  Most of the questions were the "will it hurt?" type of question but just asked a different way.  Like "how does he take the stitches out Daddy?" or "will Anna get a shot?"
It took awhile for the doc to get the stitches out.  And, having Allie and Emily in the examination room with us didn't help matters.  Anna's doctor was stressing so he kindly "requested" that Allie and Emily wait in the waiting area.  No problem.  The ER doctor apparently put the stitches in TIGHT.  Tight stitches on forehead skin with a dry scab makes for a difficult pull and snip (apparently).  The stitches came out finally.  Relief!
This is Anna while we were waiting in the examination room.  She is holding a luvvie Auntie Joan (my sister) had given her.

Anna has Spina Bifida.  It may not be visible to everyone everyday, but it is certainly visible to Anna. And Sarah.  And me.


Vesti said...

Our son's SB is also mostly invisible to others. He is very much like Anna...and we are sooooo very thankful! Exactly a year ago, we spent an evening in the ER for 5 stitches in the exact same place. It's always nice to know someone is in the same boat we are!

Dad to Triplets said...

Vesti - it certainly is nice to hear from others going through the same thing(s). Thanks for the comment - I'm thankful your son's cut and Anna's cut were fairly harmless!

Aubrey Holloway said...

Good thing you live near a hospital. I guess the medical staff was surprised. Although I can’t blame them for their initial reaction, since a lot of kids go berserk on the first sight of a needle. This would definitely mean that your girl is one brave kid! :) And to still smile after that is truly a great mark of character. I can see how much you love your daughter, and how secure she feels in your arms.

Aubrey Holloway