Thursday, August 8, 2013

Losing Teeth = Crime Scene?

Losing teeth is a right of passage.  For most kids it's a mysterious, exciting time they can't wait to share with others.  We've experienced multiple different things when T loses teeth.  It's ranged from crying and sad to give a part of herself up to us actually not even knowing she lost a tooth because she pulled it in hiding, afraid she would be in trouble for doing so.  Whatever the thoughts going through her head, it never changes the obsessing over said loose tooth and the compulsion to GET THAT SHIT OUT.  People throw OCD around very loosely.  This is the real deal, 24/7, CAN.NOT.STOP. at any cost.    That in combination with her ridiculous pain threshold is seriously frightening. 

I was enjoying my lunch....was being the operative word here.  T was upstairs doing T things...i.e. messing with that damn tooth.  My back was to her so when she came downstairs and said, "I got it out!", I was completely unprepared for what I was about to turn around and see.  She had fists full of blood-soaked toilet paper and blood all over her face and arms....and I mean ALL OVER.  It was  running out of her mouth.  Blood doesn't bother me.  It's all that blood combined with knowing how that tooth was only slightly wiggly this morning.  When she opened her mouth it did NOT look like a simple loose tooth pull.  Blood was POURING out of the socket....again another clear indicator of how hard she worked to get it out.  *shudder*  So yeah, even though there was blood everywhere, it was the thought of what it took to get that sucker out that made lunch suddenly seem like a very bad idea.  T, on the other hand was nothing, but relieved to have rid herself of whatever misery leaving that tooth alone was causing her amazing, little brain.  After plenty of rinsing and ice, the bleeding finally stopped and without missing a beat T asked for a plate of nachos.  So while I will probably have nightmares about this, she's moved on to more important things like familiarizing herself with facts about the venomous snakes of the world.
   
*Edited to add...

T: You know when I pulled that tooth?  Yeah, I didn't expect that much blood.  I was like, WHOA that's A LOT of blood.  I sure hope I make more.

Thursday, August 1, 2013

Comfort Aspie Style

One thing you know you can count on with T is no-nonsense, bottom line info. regardless of the situation.  She's not trying to be harsh, she just sees the facts and doesn't feel the need to cover them up in other frilly, feel-good statements.  For example, when I was getting ready to go in for knee surgery she put me in a bear hug, laughed maniacally, and said "I love you and I hope you don't die during surgery", then ran off.  It took a lot for her to express that and I know it came from the bottom of her little heart.  So her knowing I'm really worried about my Grandma was cause for another of those heart to heart talks.  She sat down, put her arm around my shoulders and said, "I know you're worried about Grandma M.  I'm worried too and I don't want her to die, but if she does we can always go back to her house and take more stuff.  Oh, and you can always type her name into ancestry.com and look at her information.  That will remind you of her."  And of course, she jumped up and ran off.  Again, I know that came from a deep place of love and that those were just the logical answers in her mind....we're sad, but here's how we feel better...end of story.  Thank you T, you turned my sadness and tears into fits of maniacal giggling I hope was worthy of you.     

Sunday, January 20, 2013

Turner Syndrome ONLY comes in Pink

I've been away from this blog thing for awhile and WHOA have some things happened since the last post.  We've now been introduced to Turner Syndrome, which I previously just vaguely remember from genetics class.  T had appendicitis in Sept. 2012.  If it wasn't enough for our oldest daughter to have emergency surgery, the surgeon came into recovery, threw some pictures down and said, "I saw something during surgery."  Given my history, the first thing I thought was that he found cancer.  Thankfully, that's NOT what he found.  That's not to say we were prepared in any way for what he did find...or for his complete lack of understanding how his horrible delivery impacted us.  The next thing he said was that what he found is "indicative of some syndromes" and that we should see a geneticist and endocrinologist right away.  No specific syndromes mind you, just "some syndromes".  Thankfully for us, the nurses were empathetic and closed curtains, brought tissues, etc. while we literally were unable to breathe. 
When we got back upstairs to the Peds. floor, the Drs. up there were much better equipped with empathy, language, and information.  The one thing we kept hearing was the likelihood that in addition to Asperger's, Turner Syndrome was something we needed to familiarize ourselves with.  They offered to do the blood draw an send off the karyotype for us so it would save us a trip to one more specialist. 
After over a month of waiting and worrying, we finally got the results.  T does in fact have Turner Syndrome.  Only women can have Turner Syndrome.  It occurs in roughly 1 in 2500 births, only an estimated 1% of fetuses make it to term, and 10% of miscarriages are caused by Turner Syndrome.  We never would've known she has TS until things started to or were lacking in her health and physical development. 
So jumping forward, T now has an endocrinologist who will monitor her every 3 mos. for the rest of her life.  She has been on growth hormone injections for 2 mos. now and will be on those until she's considered done growing....min. 7 yrs.  She also has a cardiologist.  Thankfully she doesn't have the 2 major congenital issues often associated with TS, but she's still at great risk for various other things impacting her heart including aortic dissection.  No nephrologist for now as her renal u/s at this point shows no abnormalities.  There seem to be countless implications for her health that are lifelong and pretty heavy duty. 
We all ready knew T was an incredibly special little lady, we just really had no idea how many statistics she beat to bless our lives as one of our daughters.  I could type an endless list of info. about TS or I can make this easy for us both and share a couple links if you'd like to peruse at your leisure and educate yourself.
www.turnersyndrome.org
http://www.turnersyndromefoundation.org/