Wednesday, June 17, 2015

Life with Spina Bifida - An Update

As we begin to wrap up the school year, I wanted to give an update on how Anna is doing.  Day to day, we don't really think about spina bifida.  I think it mostly rears its ugly head when comparing Anna to other second graders with respect to physical abilities.  Well, I should say, when Anna compares herself to other second graders.  I always go back to the conversation the doctors had with us after my ultrasound at 17 weeks when the girls and Anna's spina bifida were discovered.  In describing the impact of being born with spina bifida, we were told that Anna would most likely need assistance with walking, whether in the form of braces or a walker.  The fact that Anna doesn't need any assistance is a bit of a miracle to me and I remind her of that when she's upset over not being able to physically do something that other kids her age can do.

Gymnastics is a perfect example.  Anna's in the beginner level class and who knows if she'll ever have the skills required (pull over and back bend) to move up to the next level.  BUT there are plenty of other second graders in her class who have the same skill set and physical ability that she does when it comes to gymnastics. 

And then there's dance.  The fact that she can even participate in a dance class and perform at a recital is amazing to me and I tell her that.  She looks absolutely precious when she's dancing and to strangers, she may appear to be slightly hesitant with her movements but little do they know how physically demanding it is for her.  I know we'll reach a point where she won't want to take dance and gymnastics and that's okay.  I've offered to find a piano teacher as she had expressed an interest at one point but she's now saying no.  She's still young and there's plenty of time for her to find her activity.

(That's Anna on the right, from the rehearsal.  A million dance pictures coming soon.)

Spina bifida itself has no direct impact on learning.  Those concerns usually stem from hydrocephalus and shunting, which is a result of spina bifida.  Academically speaking, Anna is doing very well.  When I spoke with her teacher in December, she had noted that while Anna was where she needed to be, there were some areas that they were keeping an eye on.  Our school system is very much focused on ensuring that kids don't fall behind so they try to address problems before they happen.  When I met with her teacher back in April for our final parent/teacher conference, I was extremely happy to hear that Anna had made significant progress.  In fact, her teacher says that of the entire class, Anna has come the farthest.  Any math assessment she brings home that needs to be signed is always graded at 90% to 100%, her reading is strong and months ago, they made the call to end OT sessions.  Emily's BFF was in Anna's class this year but Anna also made many new friends.

We're still working out what to do with the reflux to her kidney.  Her urologist now wants to surgically correct it.  Eh, not the option I wanted to go with.  We still need to meet with him for a consultation but we have been told that the surgery is not invasive.  Although that may be the case, the question is still out there as to whether or not they'll want to keep her overnight, like they did when she had her hernia surgery.  After that surgery, they gave her antibiotics via IV to reduce the risk of infection spreading to the shunt tubing in her abdominal cavity and then traveling up to her brain.  Anna is currently taking antibiotics for her fourth round of strep throat since February.  And while this has nothing to do with spina bifida, we were told by the pedi that if she gets it again, she'll need to see an ENT.  You know where that is headed.  Surgery. 

There are obviously other areas of concern, such as not being able to fully go to the bathroom by herself, but a lot of that isn't blog-able.  We're working it out.  We won't be the first or the last to manage that aspect of spina bifida.  It has its tough moments but you have to stay positive.



JEN said...

She is an inspiration.

Lisa said...

I hope it's not weird to say that I like your posts about spina bifida. I generally follow for your stories and photography and usually forget that one of your girls has spina bifida, but these little reminders lift my heart. A friend recently gave birth to a little boy who has spina bifida, and it's good to remember what is possible when the early months can be so worrisome. Everyone is different of course, but I appreciate what you share. Your family is lovely, and it's sweet to see how you all make things work.

Creative Works by Ann said...

Anna you are so beautiful. Your strength and determination are amazing and I love to hear updates. You've come so far and have your wonderful future ahead of you. I have the pleasure of reading about you and your interests and how much you've changed and grown over the years. <3 <3