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

Wednesday, November 2, 2011

Halloween 2011

We had a fun time this year. Nora wanted to be a witch and go trick or treating. The pumpkin patch was a bit muddy but we made it through. Other than that, things are pretty boring around here. Thanks for checking!


Tuesday, September 27, 2011

Fall 2011

Getting off at school
Waiting for the bus

Holy moly, it's been a long time since I've blogged.

Nora has started kindergarten at a public school, in a self contained program. There are 7 kids (she's the only girl) and 3 teachers. Her teachers are great and are really interactive and supportive. She is doing great although I have only been in twice to observe for myself. I get daily reports sent home and she seems to be loving everything. Nora is still working on "staying with her group" at lunch, walking in the halls, on the playground, etc. But is getting better at listening, I hope. The bus comes at 8:55 and she gets dropped off at 4:25ish. It's a LONG day for the girl.

We don't seem to have time for outside therapies right now. We haven't been to the OT or speech since mid summer. I am not sure how we are going to fit it into our schedule. She does receive services through school but I am not sure how or when yet. I think the SLP comes into the class to work with the kids and the OT may go to PE with them. They are still working out the kinks. Nora also should be going into the general ed K for some social time with her peers but that is still in the works. It is so hard to sit and wait for all of these things to happen. It has been 3 weeks so far.

I did sign Nora up for swim lessons on Sundays. She is not the best student. She just wants to be able to splash around and swim her own way. (vertically) She usually just screams and tries to get away from her instructor. She hopped out of the pool last Sunday, her instructor was in the shallow end, and she RAN to the deep end, looked around at all of us who were screaming "Stop, NO NORA, Stop! etc" and went ahead and jumped right in. The lifeguards and the instructor and I were all there within seconds so I wasn't worried about her drowning. But seriously, she is so naughty. Then, when she gets in trouble she puts herself in time out. She walks calmly to the spot then puts her head down and sobs (usually fake). But she doesn't really get any learning out of the whole T.O. thing.

I am getting used to being home without the kids all day. A whole 6 hours! Ollie has been enjoying his walks.

Well, hopefully I will be better about updating. Probably not. Thanks for checking in!

Tuesday, June 21, 2011


Today is Nora last day of pre-school. Last day at the perfect safe little bubble of a school, our school. The EEU. And this morning, she wants to write her name. She was watching Sesame St. and they were writing. And guess what? SHE DID IT! She can write her name. I am so proud of her and all that she has accomplished at school.

She started in the Birth to 3 program.

She was 13 months old. Not crawling, not making eye contact, not babbling, not responding to her name, couldn't hold a cup. And now look at her! LOOK at my baby girl. She is the sweetest, most open hearted, loving girl ever. And she can write her stinkin name.


Love that girl

Tuesday, June 14, 2011


Big lollipop, little girl
backyard shenanigans

Summer birthday party
Pool party

Oh lordy. we are going camping this weekend, in a TENT, mind you. No fancy RV for us. This should be challenging. Nora is loving it now, in the back yard. We'll see how she does in the wilderness. I'll have to tie bells on her and tape glow sticks to her so if she gets away we'll be able to find her.

Emma's last day of school was Friday and we had a pool party to celebrate. SO fun. 3rd grade, here we come! Nora still has a week left then a few weeks off until summer camp starts.

Hopefully the weather will warm up here in the NW soon. We have lots of swimming planned so it better!

Thanks for checking in!

Sunday, May 15, 2011


I don't know the guy behind us so ignore him.

My BFF Lisa is Nora's godmother and her husband Tian is the godfather. Emma is holding Nora's candle.

Is that how you spell Hallelujah? Looks weird.

Anyway, Nora was baptized yesterday. It was quite the production. It was a group deal and Nora was by far the loudest. "Hi Father John, HIIIIII!!!! what's your name? (to everyone), where's my pink phone? etc etc"

I only lost hold of her once but that allowed her to run up onto the alter while EVERYONE else was seated and Fr. John was singing or something. I had to go up and get her. Not an easy task, she's a slippery little devil. And I had on heels which I don't normally wear so I was a bit wobbly running after her. Fun stuff.

But it went well until she got the water on her head which dripped onto her dress which she decided she couldn't wear for one minute longer so she took it off and was running around in her Hello Kitty undies. Nice.

All the other parents were taking pictures with their newly blessed infants, toddlers and such while I was trying to cover her up with my sweater and get her to a least wear the dress as a skirt. nope. no go. I finally got her to put her own shrug/sweater on UNDER the wet dress so she couldn't tell. Phew.

I was sweating bullets by the end of it and had to go home and drink 3 mimosas just to make sure I calmed down a bit. :)

Emma had her baptism and 1st communion on Easter Sunday which was super nice and she was super excited.

My parents came to visit from NY and to be Emma's godparents. I guess it would have been a whole lot easier to have done the whole baptism thing when they were babies but we didn't have a church or anything. Now that Emma goes to Catholic school, she really wanted to have her 1st communion so we went with it.

Onto another subject...
Last week I had to go to IKEA and thought I'd put Nora in the playroom. I don't go often and usually try not to bring her with me but we were on our way home from OT so I decided to try it. I never felt that she was ready to be left there (a-she wasn't totally potty trained and b- she wouldn't have been able to handle it.)

So IKEA has this awesome playroom with soft climby toys and a ball room and crafts and TV. And 3 really old crotchety ladies watching all the kids. One rule they have is only 3 and 4 year olds can go in the ball pit. Hmmm... this may be interesting. I tell them Nora is dev. delayed and has special needs etc. I try to tell her that she gets to play on all the cool climbing toys etc. and get the hell out of there so I can get my stuff before my restaurant pager goes off to come get her. Sure enough, no more that 10 minutes go by and I get paged. Apparently because Nora is 5 she isn't allowed in the ball pit which is EMPTY of 3 & 4 year olds. She's the only one in there. But of course she doesn't give a shit that she's 5 and rules are rules. They kicked her out but she wouldn't listen so they tried to grab her and she flailed her arms and legs. They said she was a danger and threat to the other kids (what other kids?) and couldn't stay.

First of all, she has never, and I mean never hurt another child. She just doesn't do that. She does get a bit feisty if you try to man handle her. Needless to say, I was pissed and can't believe they are so rigid they wouldn't give a kid with special needs any slack. If they let her, they'd have to let everyone etc...

Whatever old lady IKEA workers.

I am sure this won't be the first time she's kicked out of somewhere.

Thanks for checking in