Friday, February 28, 2014

I survived Dr. Seuss week at my kid's school and all I got was...

In honor of Dr. Seuss' birthday on Sunday, this week was "Dr. Seuss Week" at Addy's school.  A whole WEEK of special dress-up days.  Yay.

Monday was "comfy, cozy, lazy day," where the kids were supposed to wear sweats to school.  Tuesday was "red shirt and blue jeans day" in honor of "One Fish, Two Fish, Red Fish, Blue Fish."  A whole school full of kids in red shirts--it was a Star Trek fan's worst nightmare.  Wednesday was "tip your hat to reading day," where (for a $1 donation to the library) kids could wear a hat to school.

Thursday was "dress like your destination day."  My kid talks about going to 2 places that have distinctive appearal: the beach and outer space, and since I wasn't sending her to school in a bathing suit when it's 40 degrees out, we got to make an astronaut costume.  (White pants, white T-shirt, and a couple of astronaut mission patches from the gift shop at the Space and Rocket Center.  There was a tutu, too, but that was left at home due to too much glitter.)

Then there was Friday.  Friday was "dress like your favorite challenging and innovative (but teacher pre-approved) vocabulary word day."  I get it.  The school is pre-k through 6th grade, so things have to appeal to a wide age range.  But I really think this was a bit extreme for my 3-year old.  Thanks to the crowd sourcing awesomeness of FaceBook, Addy picked the word "constellation."

So, after a trip to WalMart to buy yoga pants, a red shirt, a white shirt, white pants, a black shirt, and star buttons, not to mention the trip to the gift shop at the space museum (which, for the record, we were already planning to go to last weekend, regardless of the school costume situation), we were set.


Wednesday, February 26, 2014

Going going going

We got a note home today from Addy's PT at school talking about her walking progress--woot!  We started sending her forearm crutches with her to school last week and the PT said she has gone from needing moderate assist (hands-on support) to minimal assist in about a week.  Addy said she walked all the way from her classroom to the library!

Tuesday, February 25, 2014

Language is such a funny thing

In her attempts to communicate using language, Nora has taken to adding syllables to words to emphasize their importance.  "Awowa" is "more."  "Awowowa" is "more now."  "Awowowowowowa" is "IF I EVER GET OUT OF THIS BLASTED HIGHCHAIR I WILL EAT THAT CRACKER AND THEN CAUSE YOU MUCH BODILY HARM FOR DELAYING GETTING ME MY CRACKER!"  Message received.

Thursday, February 20, 2014


Nora is starting to talk, though it's often difficult to decipher the jibber jabber from the meaningful language.  Her biggest word so far is "another," which she pronounces in more of a Scooby Doo kind of way: "awowa."  For some reason "more" just doesn't appeal to her.

Wednesday, February 12, 2014

MRI results

We finally got the MRI results from the neurosurgeon last week on Wednesday afternoon.  Everyone in the imaging area had said we should have them by Monday, the SB clinic coordinator said definitely Tuesday, but there we were on Wednesday, finally with the phone call from the doctor.  Not real happy about that.  The results themselves were mostly as I expected.  Spinal cord is tethered--that's the nature of a repaired myelomeningocele lesion.  The real unknown was whether surgery is needed.  At this time, for this patient, with this surgeon, the answer is "no, not recommending surgery at this time."  His opinion is that detethering surgery should be a last-resort option, considered only when symptoms are not able to be managed by other (less risky) methods.  My non-medical opinion is to agree with the surgeon, though I can't help feeling like we're being reactive instead of proactive in this situation, since we're addressing symptoms instead of causes.  The problem lies in the fact that treating the "cause" tends to make things worse. But at least we aren't facing major spine surgery right now.  That's definitely a huge relief!

Saturday, February 8, 2014

Working on being patient

Patience is something I'm not always very good at, but I find myself needing to be patient (or at least distracted) for a few days while we wait for MRI results.  We found out in December that Addy's bladder function has changed quite a bit, which can indicate that her spinal cord has become tethered.  To start answering that question, she had an MRI of her whole spine on Thursday.  And now we wait to see what the radiologist and neurosurgeon think is going on and, more importantly, what to do about it.