When (semi) good pictures go (painfully) bad

We just got back from a fantastically relaxing beach trip with my family.  Maya had fun playing with her cousins, and the extra adults around meant that we had 3 cameras out and about for spontaneous photoshoots.  On the last night we were there, my dad used my camera and took the following series of photos.

(Right before we took these I said to Dave "I'll be in the stupid pictures, but I'm not using them on the blog or framing them or anything---this shirt is too billowy and unflattering, and my hair is all beachy and wind-tangled.  (grumble)"   But then . . . well, you'll see . . . so I'm swallowing my pride and sharing them anyway . . .)

Dana: Cheese!

Dave: Cheese!

Maya: Cheese!

Dana: Cheese!

Dave: Cheese!

Maya: Cheese!

Dana: Cheese!

Dave: Cheese!

Maya: Guys, this is kind of getting old.

 Dana: Cheese!

Dave: Cheese!

Maya:  Seriously.  I'm getting really bored.  Can we do something else?

Dana: (sigh) Cheese (sigh)

Dave: Cheese!

Maya: Really . . .anything else.  There must be something else to do up here.

Dana: Cheese!

 Dave: Cheese!

Maya: Hey!  Mommy, I'm over your head!  I think I can even reach your hair!

Dana: Chee---Hey, is something on my head?

Dave: Cheese!

Maya: I CAN REACH YOUR HAIR!!!!!! 

Dana: AAAAAAAAAAAAAAAAAAAAAAAAAAHHHHHHHHHHH!!!

Dave: Pictures are so relaxing . . .

Maya: Gotcha!  (cackling)  I told you guys I was bored!  Take that!

Dana:  Ayyyyyyyyyy!!!  My hair!  I need to save the hair I have left!

Dave: I wonder what we'll do tomorrow.  I hope we go back to the beach.  I should open my eyes but I'm just too relaxed.

Maya: Hair is like a handle for your head.  This is SO FUN! 

Dana: Seriously, I have tears in my eyes.  Someone get this child to release me.

Dave: Wait.  What's going on here?  Dana, stop making that face.  We're supposed to be taking pictures.

Maya: I'm not letting go.  Ever.

(Giveaway coming sometime between now and Monday.  It's not a big prize, but it's something fun---one of Maya's favorite things.)

New pictures

are up on the Facebook page (which is set to public, so you can go and check them out even if you're not on Facebook).  It's just easier to quickly upload there :)

Pics include highlights of the week (literally and figuratively)---a few from Maya's first time walking outside, then first time walking at the playground, then my first time back in the salon since this little debacle.  Yeah, that was almost a year ago . . . don't most people get highlights once a year?

You live for the fight when that's all that you've got*

(sigh)

I'm feeling a little bit beaten down. 

Friday we had our preliminary IEP meeting.  For those of you lucky enough not to know what that means, here's a quick and dirty summary.  Maya is a special ed student----she will be entering preschool in Sept and needs and "individualized education plan".  When a 3 year old has an IEP, it mainly specifies what type of classroom she will be in (the ratio of kids to adults), what therapies she will get, and other special things she might need (like an aide).

Due to the dire state of Maya's evaluations, I allowed myself to think "This hopefully won't be too bad.  Obviously, she needs oodles of services.  Maybe there won't even be an argument."   I read the reports, highlighted things, had letters from our pediatrician and private feeding therapist, supporting the fact that we need a lot of stuff (just in case), and put together an awesome binder.   I was totally prepared.  I even blew out my hair, so as to look professional and put together.

Yikes.

My faux hawk mullety 'do

Ok, my hair wasn't helping.  But with really strong gel, I tamed it into submission.

I'm not going to give a blow-by-blow recap of the battle that was the preliminary meeting, because I  don't have the emotional stamina.  But here's the summary.

Pro's:  Maya will definitely have a seat in a center based pre-school (it's still up to me to find her a spot in a good school, but the city will approve that spot once I find it).  She will definitely have a one-on-one aide (paraprofessional).  She will definitely get the maximum number of therapy units that are provided by whichever school we go to (each school has their own maximum---for example, one school only provides a max of 2-30 minute PT sessions per week).

Con's:  In addition to the therapy in school, I want her to have therapy outside of school.  The guy in charge of our meeting says no.  He says it's his job to provide us with an appropriate school setting and nothing more.  I say that I want her current level of therapies to be maintained, and that since the school can only provide a certain number of sessions, I want the remainder done after school.  He acts like I'm asking for the moon, I say that this is neither an uncommon nor unprecedented request.  We stare at each other.

The bottom line:  I now have a lot of work to do before the next meeting in April (that's when we'll actually sign the IEP and agree on the preschool and the therapies):

-I'm touring another preschool this Thursday. 
-After that tour, I need to figure out which (of 2 schools) I like better, and schedule a playdate for Maya to go to that school and be screened.  Hopefully we get a school that says that she's a good fit and they will provide her with a spot.
-I need to gather prescriptions, letters from doctors (as many as possible), letters from all of our therapists, progress reports from all of the therapists, and whatever other evidence I can think of to argue for the inclusion of after school therapy in her IEP.
-I probably need to hire an advocate to attend the April IEP meeting with me. (Strength in numbers and all that jazz)

Also, I'm swinging into high gear with putting together our dreaded insurance appeal. 

It's very difficult to feel powerless. 

I know what I'm doing.  My binders are no joke.  The way that I am able to write rationales, organize paperwork, compile data . . . I'm pretty good at it, I think. 

It's rip-your-heart-out-painful and I'm-going-to-go-postal-on-your-azz-frustrating to put together work that's so good you think "How could any rational person argue with this?"  . . .  and just have it met by a pencil pusher who says "Um, no.  End of story.  But feel free to file an appeal if you disagree." (Smug smile and a shrug)

(PRIMAL SCREEEEEEEEEEEAAAAAAAAAAAAAAAMMMMMMMMMMMMMMMMMMM)

In a teary conversation with Dave last night I realized that I need to find a way to compartmentalize this stuff more---to not take it personally when the insurance people send me to another dead end, or this guy says "I'm not going to give you any of that, but we can talk about it again at the meeting in April if you want." 

I have to carve out some sort of zen, centered life, with satisfying and pleasant things, so that insurance appeals, IEP fights, etc (there may be a few other similar battles on the horizon) just become projects-I'm-working-on, and not things that keep me from getting a good night's sleep, and make me cry frustrated tears.

(sigh)

On a lighter note, our OT went to a taping workshop on Monday and now likes to tape Maya up.   Hee hee.

PS-Grab the "My plane landed at Amsterdam International" button if you have a blog or website.  Putting it up does three things: 1. It makes you my new bff, 2. It breaks the ice in sharing some of your experience with your friends/family 3. It helps spread the message to others who may be comforted by knowing their not alone :)

Dance magic, dance*

I blew my hair out this afternoon. 

If you're thinking to yourself, "Hey, that looks kind of familiar" . . .

. . . then perhaps you were a  Labyrinth fan.

Seriously, it's come a long way.  I really can't complain.  But I can certainly make fun of it. 

Tomorrow is Dave's last day of work (before a WEEK off!) and the KIPP Staff Thanksgiving dinner :)  Let the holiday season begin!

I'm bringing sexy back*

If you're a tri-stater, you know that today's weather was not the best---rain, wind, and humidity.  Yuck.  So, of course, I picked today to blow out my hair for the first time in nearly 2 months.  Why?  Because I realized I was afraid to.

If you've been reading for a while, you know all about my hair woes.  Back at the beginning of August, I decided not to blow my hair straight for a while.  For one thing, the weather made it a losing battle.  For another, when my hair is curly it hides both the hair loss & growing-in-spiky-patches really well.  But this morning, as I threw more hair into the garbage can, I realized that it's been so long that I was afraid to see what it looked like.  And the only way to get rid of fear is to confront it head on (unless you're afraid of grizzly bears, or something equally hazardous).  So I blew it out.

Hello, gorgeous.

(working the side pose)

And this, folks, is why I've been wearing so many hats.  It's hard to walk around like this, without feeling like people must be wondering what the heck happened to your head.  While I'd like to think that I would just spit out random stories to staring onlookers ("Oh, my hair?  Have you ever heard of the Great Scissor Duel?  No!?  Well, you should see the other guy.  I actually took first place!") the truth of the matter is this:  When I'm out in public, I'm usually juggling our big jogging stroller, a whiny Maya, and our overenthusiatic puppy . . . I'm barely 2 feet out the door before I've totally forgotten about the state of my head.  So I take myself very seriously as I argue with the pharmacist for 10 freaking minutes about why they have-to-have-the-nebulizer-medicine-here-or-there-are-going-to-be-big-problems, and then when I catch a glimpse of myself in the glass at the pharmacy I feel totally ridiculous. (They found the medicine, by the way.)

This is as good as it gets, with some comb-over action:

I'm still losing a lot of hair, but it must be dispersed over my head more, because I'm not finding new bald areas.  I'm SO glad that I've been taking pictures along the way, because it's amazing to see how far I've come:

6/20:

7/20:

9/30

:)

My new 'do

Ever wonder what it would look like if  . . .

. . . you let a toddler cut your hair?

 . . . or fell asleep with several pieces of gum in your mouth that fell out and got into your hair and had to be cut out?

. . . or you put a blindfold on your hair stylist, tied one hand behind their back, and just said "go for it!"?


Maybe something like this:

As new hair grows in (hooray!) I've been left with crazy tufts that stick straight up.  If you've been checking out our albums on Facebook (apple picking, baby rats, etc) you may have noticed that I'm wearing a lot of hats lately----and now you see why! 

Don't get me wrong, I much prefer crazy cowlicks to shiny bald patches, but they are really distracting.  No amount of gel will hold them down, and it's hard to meet people and have normal conversations without acknowledging that I have weird vertical hair chunks all over the top of my head.  It screams "make a joke about Maya playing with scissors while I was passed out on the couch".  So as not to alienate people with jokes about being a neglectful parent and endangering the welfare of my toddler (weird, isn't it, that some people don't get my humor?), hats seem like the safest option.

(More hair is still falling out, but I'm not focusing on that right now.  Instead of shots, I'm now using a cortisone foam that gets applied to my scalp 3 night a week.)

Maya's fall schedule is nearly solidified, and although she's as busy as ever, the spacing of her appointments seems much better this year---I'm excited to have better chunks of free time!  At first glance, though, she's certainly a busy girl:

That's it for now----I just pulled 2 loaves of apple bread out of the oven, and they're calling my name :)

But the loveliest of all was the unicorn . . .

So earlier this week I blew my hair out.  I like it straight much better than curly (it's cooler, more manageable, etc.) but it's easier to notice the hair loss when it's straight, so I've been alternating.

Well, imagine my surprise when I've finished blowing it out, and I notice that I have a very unicorn-esque horn of hair sprouting up in the back: (See it?!  Right in the rear of my part)

In a few more weeks it will be exactly like that dude from the Little Rascals:

So I realize that this sprout of hair must all be new growth. 

But it's a really thick patch . . .

so that must mean that there was a really big bald area . . . uh oh.

 I called my mom to demand an explanation----had she seen it (it's too far back for me to see in the mirror)?  Why didn't she tell me?  Her response "Oh, I may have seen that one."  Sigh.  I grabbed the camera to give myself an aerial view, and confirmed that anyone taller than me must have been getting quite a view:

At least you can see the thick patch of new hair growing in.  But, man, imagine how big that must have looked with no hair!  Yikes!

I returned to the dermatologist, eager to show off all of the new hair growing in, but she wasn't as impressed as I was (no fireworks or releasing of doves or anything).  She was somewhat concerned that I still have a a lot of hair falling out (join the club) so I was started on a course of prednisone in addition to the shots. (By the way, this time I tried to count the shots and got up to 56 before I gave up!)  Hopefully these steriods will kill off the rogue white blood cells that are attacking my hair follicles.

Well, this doesn't seem fair

I'm losing my hair.

Have you ever heard someone say something like "These kids are going to make me lose my hair"?  I always thought that it was just a crazy thing that old people say.  Like when someone says that if you sneeze with your eyes open your eyeballs will pop out (that's not true, right?  Anyone willing to test it out?).  But, in reality, it seems like Maya is making my hair fall out.

 In clumps. 

And now I have bald patches. 

And pictures to prove it.

Before we get to the pictures, let's take a moment to dwell on how much this sucks.  I don't want to lose my hair.  I don't want to have giant bald patches.  I had a full on panic attack (with tears and a hysterical can't-catch-your-breath-hiccupy-kind-of-conversation with my mom) yesterday afternoon about it.  This morning I went it to the dermatologist, who said that I have alopecia areata (fancy latin name for bald patches, caused by an autoimmune response in which my body is attacking the hair).  She injected me like a million times (ok, somewhere between 35-60---I lost count because she kept talking to me) with cortisone, which will make my body stop attacking the hair follicles so that new hair can grow in.

My googling tells me that this type of hair loss is often caused by a major stressor a few months prior, which totally makes sense to me.  A few months ago I was cycling through the stages of grief, coming to terms with the fact that Maya's disabilities may not be as short lived as I had hoped.  I was depressed, I was finding a support group, I was changing her therapists.  I was kind of a mess for a few hours everyday.

But how unfair is that----that you go through a traumatic time, and then a while later lose your hair?!  What the hell.  Seriously.

So hopefully I'm going through a big shed, and the hair will come back rapidly.  Dave asked me yesterday (mid-panic attack) if I'm stressed about things now, and through my tears I laughed and pointed at my head and said "Yes!  My hair!"

But I've got to at least put it out here.  I often things of the Indigo Girls saying "You have to laugh at yourself, because you'd cry your eyes out if you didn't."  And so, expect balding jokes, people.  And, if things get any worse, expect some unique fashion statements (would it be weird to glue a flower to the top of my head?  or color my patches with magic marker?).

And now, pictures:

A bald patch in the front, along the part:  (try to ignore the frames without pictures that adorn our bathroom)

The biggest and scariest patch.  I hate to even look at this.  Thank goodness I'm fairly tall and have enough hair to change my part around and cover it.

Luckily, I still have a lot of hair.  And with some part maneuvering, I can minimize damage. 

If this is the worst that it gets, it's not really a big deal and somewhat funny.  But I'm kind of stressed out about it getting worse.  Oh crap, I'm not supposed to get stressed, it makes my hair fall out. 

Oh, irony.

Speaking of irony, I used the new clippers to shave (or attempt to shave) Parker today.  35 minutes in, I'm sweating, he's panting, there's so much fur in my bathtub that it looks like I killed a sheep, and he still looks like this:

I think he's taunting me.