Thursday, October 31, 2013


Addy had Trick-or-Treating at preschool this week.  She wore her Batman dress, pink mask, and gold crown and went as Princess Batgirl.

Today being actual Halloween, we went ahead and dressed up for a little while, even though we didn't go out (all 4 of us are doing battle against The Sinus Infection From Hell, plus Nora has an ear infection).  Addy was quite certain that she needed both the crown and the mask to go with her princess dress.

I think Super Princess and her pet dragon are quite adorable.

Tuesday, October 29, 2013

Nora's Baptism

I finished up most of Nora's baptism dress a couple of weeks ago, and put the finishing touches (bloomers and sewing on one last button) on Saturday evening.

We had lots of family in town to help us celebrate.  A fun visit for a beautiful day!

Thursday, October 24, 2013

Happy birthday

Someone is a whole year old now!

Life's too short not to eat cake first on your birthday, so that's what we did.

Then we had a decision to make: bath first or real food?  We picked real food on the assumption that she couldn't get any dirtier than she already was.  We were wrong.  In between bites of chicken nuggets (which were really almost molĂ© chicken if you think about it), she brought her foot up and smeared crumbs and frosting in between her toes.  Well played, Nora.  And happy first birthday.

Monday, October 21, 2013

1-2-3 Go!

Fifth tooth and first independent steps: it's been a full day for Nora!

Thursday, October 3, 2013

Look who's standing now

Nora has declared herself to be so big.  No more baby food for her.  Chicken nuggets for dinner and juice in a straw cup thank you very much!  And the standing--so much standing!

Tuesday, October 1, 2013

October is more than just pink

It's Spina Bifida Awareness Month--yay!

Spina Bifida is a neural tube defect that happens during the first month after conception.  There are several forms with big, scary sounding names that describe the defect, but they don't really tell us non-doctors a whole lot. The main things to know are:
* The exact cause(s) are not known.  Quite a few correlations have been identified, and there seem to be both environmental and genetic factors involved.  But the details are still being studied.  I read about some research that indicates that the diet your grandparents ate can impact your odds of having a child with SB.
* Experts talk about folic acid being able to reduce the risk of having a baby with a neural tube defect.  It does, by about 70% according to some research, but it doesn't eliminate the risk entirely.  Some women aren't able to metabolize it efficiently and there are medications that seem to interfere with the metabolism of folic acid.  That said, FA is easy to add to your diet.  If you're female and of child-bearing age, get at least 0.4mg (that's 400 micrograms) daily.  Ten times that if you have a family history of neural tube defects.
* Every person with Spina Bifida is just that: a person.  They do things differently than able-bodied people sometimes, but they really are just people.  Like able-bodied people, everyone with SB is different.  Even people with the exact same lesion level may have different challenges.
* There is no cure.  There are surgeries (a LOT of surgeries), hours of therapy, doctor visit after doctor visit after doctor visit, tests, evaluations, meetings, medications, procedures, equipment, braces, skills, plans, etc that help a person to be productive in spite of their disability, but none of it cures the nerve damage that happened due to the original lesion or continues to happen due to tethering of the spinal cord.  Maybe that will change in the future with stem cell therapies and other medical advancements, but right now, there is no cure.
* Like most disabilities, Spina Bifida is not contagious.  It's not "cooties" and your kid won't suddenly stop being able to walk just because my kid uses a wheelchair and they're in class together.  (Important side note: Even if your kid did need to start using a wheelchair, they would be no less awesome than they were before.)
* Finally, SB is the most common permanently disabling birth defect in the US.  It affects a growing community of some 166,000 people in the US and you're likely to come across some of them at church, at school, or even at the grocery store.  So be aware!