Amazing what one can learn...

From a little piece of paper. We have received several little pieces if paper in Dylan's little lifetime and we have learned so much. Probably starting with the little piece of paper where the nurse spelled out
H o l o p r o s e n c e p h a l y so we could look up what she was talking about. (We give the NICU doctor a big fat FAIL at this one when Google (frighteningly) did his j o b for him.)

So a little while ago I asked for the genetic report for Dylan. I needed to know her exact gnome (I think that's what it's called) to join a group called Unique out of the UK. It's for families who have chromosome kids. I wasn't sure what it was all about, I had just heard they were great and knew they had a newsletter.

So what did we learn? Ready for another big word? Currarino Syndrome. Dylan has it.

Here I have been spelling out all her spinal issues, the dysgenesis, agenesis, tethered cord... well all are covered by the two words Currarino Syndrome. (I've linked to Wiki for those like me who just can't get enough of Dylan!) Her deletion is a doozy of a deletion on the long arm (q) of chromosome 7. This included a gene that causes HPE (SonicHH) and another that can cause the Currarino bit. And see, I thought it was all the same gene. This explains why most of the HPE kiddos don't have the bladder, bowel and spine issues that Dylan has. Fascinating!

(Edited to add: Okay, that wiki article isn't the best, there medical ones that are longer and better if you search. And, for the record, Dylan did not have IA, no after-market heiny required, and her other parts are fine. Her issues are all related to the spine and inside her bowels. Okay, carry on... =) )

I joined Unique and they sent me a report on kids with 7q deletions. One thing that stuck out was the observation that they all had exceptionally great personalities and demeanor which is something that made dealing with others easier for them as they grew.

Speaking of that little cutie... I went to the store the other day and there was a little place for the kids to sit and watch TV with a bench. So I wheeled the stroller back there and told Duncan to sit on the arm of the bench because it was plum full of kiddos. Duncan did a kid intro of himself, turned Dylan around to face the kids and said "That's Dylan!" all proud like... he introduced her too! So cute. And that's when it happened... for the first time ever. The little kids stared and whispered. I couldn't believe what I was seeing.

What would the non-pregnant me have done? She would have knelt down to the girls and asked them if they had any questions about Dylan's adorable little AFOs. I would have explained what they were for and a little about Dylan in kid speak. Something I have done countless times before with nieces and nephews, even adults. But it caught the pregnant me off guard, and it hurt, so what did the pregnant me do? Burst out in tears, tried to shop, realized I couldn't and left completely. Something about Duncan being so proud of Dylan and those kids not being able to get over her to even acknowledge him (or her) and Duncan being oblivious to the whispers hit a nerve that I don't think it normally would have. And to be completely honest, it broke my heart. It. Really. Hurt. It still does when I think about it.

I hate it. I hate that I couldn't get past the emotions to say something nice and introduce her. I hate that I ran away. I hate that I cried. Ugh... miserable.

On the other hand, I love that we (meaning our extended family) have had countless conversations with all of my nieces and nephews. I love that we have talked about her button, why she doesn't eat, about why she grows slow, about why she has braces on her legs. I love that I know and am related to 20+ fewer kids who will get quiet, stare and whisper when they are around someone that's different than them.

iPad update: Dylan is still loving the program with the black, white and red pictures. It's still her favorite. She loves it. I am desperately seeking a program that will play music as you draw with your finger. Organized music (preferably classical =) ). The star program will play music as you draw but it's super quiet twinkling music. The piano of course plays notes are you drag your finger along but it's chaotic. I need loud obvious tunes. Dylan neeeeds!

I have downloaded countless free programs for the kids, just because you never know what's going to resonate with them. It's been fun, and Duncan's having fun exploring them all. He's a quite proficient iPadder. He can navigate it easily, open programs and play. We even tried it out of the house when I took Dylan to the doctor on Thursday. They needed to do another culture to see if her infection is really gone. He sat on the bench in the room and quietly played. It was FABULOUS! And a HUGE difference from the last time we went in and he was practically climbing on the walls!

Duncan being big with dad. (We took everything off of the high ledge, vacuumed, wiped it all of and put everything back. yucky job!)


Maybe too big? This is Matthew gently nudging him down after he climbed a wee bit too high for comfort!


The obligatory 'first Oreo' picture!


iPad pro at work


Ian got stuck and was super mad... I found it quite funny he got himself in this predicament in the first place!


Ian thinks Uncle Kiko is just about the funniest person alive.


Really, super funny.


One can't ever get enough baby giggles. - Both of these are lauging at Uncle Kiko and a bouncing ball.