Thursday, July 18, 2013

Can't catch a freakin break

SO the new fun news in our lives is Nora has early onset puberty.  Great.  Just what the poor girl needs.  She's 7 1/2 and has the left hand bones of an 11 year old.  (that is how they determine precocious puberty-that and the appearance of pubic hair).  Wonderful.  Not only will she have to live her life being behind her peers in every other which way, oh no, she gets to be in front of the line on BO, getting her period, body hair, shaving, acne,etc..

The good news is there is treatment.  We just don't know what is causing it yet.  Could be thyroid.  Or maybe,  the pituitary gland.  Ya think having brain malformations( arachnoid cysts and agenesis of the corpus callosum) would clue the doctors, and there have been many, that maybe she could go into puberty early.  If you google ACC not much out there regarding puberty but if you google them together, well you get shitloads of info.

I am still pissed off and trying to process this (our appt. was yesterday at 4).  She had some blood work done, which we had to be admitted into the hospital for b/c she is like a bucking bronco getting shots etc.  They had to give her nitrous gas, which made her MAD at first but then giggly and a bit loopy.  Kinda like I was at the Dead show in Buffalo in '93.  That stuff is crazy.

I guess we had a few good months of non drama.   What's one more shit pile on my plate? 

Anyway,  just had to vent to the blogiverse. 


Thursday, May 23, 2013

Long time, no see...

So Nora is 7 and so many things have changed in the last 2 years.  I don't know why I stopped blogging.  Probably because things seemed to be so much better than they were when I started.  And not sure if anyone was reading anyway. 
She is such a happy soul.  She loves people and loves to talk.  Boy does she.  She is reading lots of books.  Loves to read.  She can read just about anything.  She has great phonetic skills and knows every sight word.  Her comprehension is not so hot but she's taking baby steps.  She is also writing.  She still has a hard time with her fine motor and her grip is crazy.  All 5 fingers.  I don't know how she does it.  She is a champ on her scooter-3 wheel.  She goes crazy fast.  But she can also use a 2 wheel and balances and goes super fast.  She has no fear.  She is getting very good at swimming.  She surfs the web/Youtube like a pro.  The iPad is her thing.  I can get her to do anything if I threaten to take away her iPad time.  She is TOTALLY potty trained.  It took her until  she was 7 to poop in the pot.  The iPad threat works wonders I tell ya. 

There is so much more to say but I just wanted to give a quick update if anyone ever checks this thing.  I get so sad when I go to read all my regular blogs and they have stopped writing.  Most of the infantile spasm kids I used to read don't post anymore.  Life gets busy and the diagnosis/disorder/delay/disability/whatever isn't such a focus anymore.  Living our "normal" life is just that.  Normal.  I still have days when I think why this happend to us/her.  But mostly not.

My mom passed away from colon cancer after 9 years of chemo/radiation/ pain this past August.  She was 64.  She lived in NY so Nora now thinks she lives in New Heaven.  Not just Heaven but NEW Heaven.  We all miss her so much.  Life is hard sometimes. 

Summer of 2009.  I scoured my photos for a more recent one but my mom looked so sick in them.  She wasn't that excited about getting pictures taken. 

Thanks for checking in