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Christmas in full swing

19 Dec

We have all the Christmas crazies happening now.  I’ve been trying to wrap presents early mostly to keep Maura from ruining surprises for everyone after rummaging through my room.  And I did get some wrapped…only for her to decide last night to put them under the tree.

That’s a new thing for us.  Amazingly, she has yet to open any of them.  Nor has any dog decided to use them as chew toys.  Win/win!

But then Josh caught her walking away with scissors and plans to wrap a gift and ended her joy spree then.

Today however, I handed her some leftover tissue paper.  “Here, want some Christmas paper?”

“YES!” she said, snatching it from me.

She then grabbed an already wrapped gift from under the tree – one of her gifts actually – and wrapped it up some more before putting it back under the tree.

Guess which one she wrapped?

Guess which one she wrapped?

 

The room is filling up with all sorts of Maura creations.  She brought home a gingerbread house the other day.  It’s pretty awesome, with a fish pond and everything.  It now has a home on the side table.

isn't the fish pond cool?

isn’t the fish pond cool?

 

And today, she brought home some handmade ornaments.  Her teacher does those cookie ornaments.  We have the one from last year as well.  My mutant gingerbread people are becoming my favorite ornaments.

The one on my right is my favorite.

The one on my right is my favorite.

 

I did also manage to make and send in gifts for all of Maura’s classroom people, her teacher and the aides who work in the room.  I managed to knit five coffee sleeves in a very Maura color and put a gift card with each one.  Maura and I also stuck together the penguins to put on the front of each little gift box.  I was quite impressed with my small herd of teacher/aide gifts.  Even if I didn’t finish them up until this morning, and had to drop them off at school.  They were on time enough that the aide who works mostly with Maura was able to send home a thank you note.

The gift card coordinates with the sleeve - so not planned!

The gift card coordinates with the sleeve – so not planned!

How cute are these?

How cute are these?

 

Now I just need to finish wrapping gifts before Maura gets too curious and starts rifling through my room again.  And for some reason, I may have offered to let her help me wrap some gifts and bake some cookies.  Maybe we can make more mutant gingerbread people!

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“He’s just not that into you.”

17 Dec

Yesterday, we took Maura to see a new neurologist.  I made the appointment back in the summer, when we were having all the troubles getting an EEG done.  I was feeling less than enamored with the children’s hospital and another mom told me to try a different hospital.

“It’ll be great!” she said.  “They see you right away!  There’s offices on this side of the lake! They really listen!”

So I called.

Their first available was October.

Well…okay.  We continued with the children’s hospital, got the EEG finally done, weaned Maura off meds, went back for a check up, all while waiting for the October appointment…which got cancelled last minute by the hospital and had to be rescheduled for December.

For those playing the home game, that was five months later.  So in the “They’ll see you right away!” category, they failed.

I also didn’t get to stay on this side of the lake.  Again. for home game players, the Seattle area is sort of divided up in two parts – Seattle and Eastside, with a big lake, a couple bridges and tons of traffic separating the two.  We’re Eastsiders.  I hate traffic.  I like not having to cross the bridge for things like medical appointments.  I will say, the children’s hospital has managed to keep us on this side of the area.

The new hospital…”Okay, so we’ll see you at the Seattle campus.”

crap.

So we picked up Maura early from school yesterday to finally take her to this appointment.  The original reasons for going – the EEG and medicine weaning – were no longer issues.  But I thought maybe, just maybe, we’d find someone who could look at Maura differently.  Who’d be interesting in her case.

We didn’t get that.

We did get to wait…and wait a little bit more.  Not a horrendous amount of wait time, but more than we’ve had in a while.  The doctor finally came in, and it started off well.  He tried chatting with Maura, asking her name, how old she was, about school.  Maura answered a few things.

But then it was a lot of “Well, she’s got what she’s got, there’s no changing that, you need to accept things.” and “Well, let me explain seizures to you.”

Um…wait.  Did I just turn back time about seven years?  It felt like I was getting the “new to this” speech for parents.

I tried explaining how when Maura first started seizure meds, we saw a huge leap in her skills.  He said “Oh, that was probably a coincidence.” and explained that a big leap in development like that would have only happened if she was having multiple seizures a day, not the occasional one.  When we tried to explain that no, it really was significant, he insisted that what we saw was just a coincidence.

So I mentioned how with her first EEG, it showed seizure activity even though she was acting normal.  He also poo-poo’ed that, that it wasn’t what we thought, that something like that would be very rare.

Hi, meet Maura.

At that point, I felt deflated.  Once again, we had waited all this time for an appointment only to be told that coming there was sort of pointless, just accept she’ll never have a diagnosis, it wouldn’t change anything anyway.  He came in with this speech almost rehearsed.  It honestly felt that way to me.

I wish sometimes that when I call for these sorts of appointments, they would just be honest.  “We’re not that interested in your child. We can’t help you.”  It would save me two hours of sitting around the office.  Also, I dislike the “I’ve just met you, I’ve read part of her file, but I know more than the doctor who ran the tests and saw her every few months for three years before the test was run and watched her grow and develop.”

Instead, we got yet another brush off.  Except he would like to see us in 8-10 months.  I’m not sure why.  I don’t know if I’ll follow up with him – if Maura’s not having seizures and there’s no reason to pursue a diagnosis. why bother?

It’s just a bit tiring, to go to specialists who just aren’t that into you.  I’m a bit over it.

There is no guidebook for this

9 Dec

Gentlemen, avert your eyes….

Today, while in Target, I had this moment of awareness and horror as I realized that Maura is pretty much out of girls sizes, and plummeting into puberty.  Puberty is scary enough with a normal child, but in Maura’s case, I may become a full-fledged alcoholic by the end of it.

I realized, as I stood there in the girls section looking at new and improved comfy sports bras that Maura had outgrown the largest size.  I found myself in the intimates department, wandering about with a dazed look.

There are barely guidebooks for taking your normal daughter bra-shopping.  There’s nothing about taking your not-very-verbal, delayed, doesn’t understand the idea of just trying on stuff daughter bra shopping.

Does anyone even talk about it?

Okay, I understand why most don’t.  You want to respect your child’s privacy.  Just because you have a disability doesn’t mean you’re not aware of what’s being said about you.  But Maura’s been different in that way.  She doesn’t know, doesn’t care, isn’t bothered by what I write.

So I thought I’d write about this.

My plan is simple -

I know how to measure for bras. I’m hoping we can get away with easy sports-bra type stuff, things she can get on and off.  None of those tiny hooks if we can get away with it.  I’m praying fervently that she doesn’t take after my side of the family (we’re quite bosomy, as my grandma would say.)

I am also hunting down all the “comfort” styles, the cami’s with the built in bras.  These could be our friends.  Kohl’s stocks these pull over bras that could work. I shall measure her, hunt down stuff without her, try them on at home and see what works.

And hopefully, I won’t kill my liver in the process.

 

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