As many of you know, we've been trying to find a diagnosis for Maura that explains the low muscle tone, delays, crossed eyes, blah blah, yadda yadda, and everything else.

Today, someone asked why I don't get her an autism diagnosis.  This isn't the first time this has been asked, and I thought "Hmm..I wonder just how many people wonder this?"

So, why don't I get Maura an autism diagnosis?

Well, first and foremost, she doesn't fit the criteria. Not even PDD-NOS (pervasive developmental disorder - none other specified.)  To quote Wikipedia's entry on PDD -

Some clinicians use PDD-NOS as a "temporary" diagnosis for children under the age of 5, when for whatever reason there is a reluctance to diagnose autism. There are several justifications for this: very young children have limited social interaction and communication skills to begin with, therefore it can be tricky to diagnose milder cases of autism in toddlerhood. The unspoken assumption is that by the age of 5, unusual behaviors will either resolve or develop into diagnosable autism. However, some parents view the PDD label as no more than a euphemism for autism spectrum disorders, problematic because this label makes it more difficult to receive aid for Early Childhood Intervention.

For those of you unfamiliar with symptoms of PDD (I had to look it up, don't feel bad), they are - and again, quoting from the Wiki entry -

• Difficulty using and understanding language
• Difficulty relating to people, objects, and events
• Unusual play with toys and other objects
• Difficulty with changes in routine or familiar surroundings
• Repetitive body movements or behavior patterns

Now, Maura does have difficulty using and understanding language.  However, the other four criteria doesn't really fit her.  She plays with toys pretty normally, she is social, flexible, and the only repetitive body movement is thumb sucking, which I don't think really counts. 

She actually was evaluated for autism and came back with a "not autistic" diagnosis.  None of her doctors, teachers, or therapists have ever mentioned autism to me.  I've even had her tested for Rett Syndrome, which for the moment is considered on the autism spectrum.

Despite all that, I could actually go to some doctor and probably get some autism spectrum diagnosis.  There's one near us who is notorious for giving them to everyone. 

So why don't I?  Wouldn't it open more doors?  Couldn't I receive more therapies?

Yes and no.

Right now, Maura does qualify for occupational, physical and speech therapies just the way she is.  Many autism therapies are behavioral and social therapies.  Maura doesn't have behavioral or social issues.  She is a happy social girl who will look you in the eye, say "Hi!", and try to join in with what the other kids are doing.  If you showed up at her dance class and tried to pick her out, you wouldn't be able to, because she is sitting nicely with the others, following along well, not causing a commotion. 

And it might open more doors, an autism diagnosis, but it may also close a lot as well.  I worry that if we slap an autism label on her, it may cause a future doctor to not look as closely at her to find out what is really truly going on with her, and write it all off as autism. 

Which brings me to the final reason.  And that is basically, I don't want a diagnosis that isn't true.  I don't want to lie my way into therapies or extra aide.  We manage just fine.  What if by taking that spot on false pretenses, we take it away from a family that really needs it? 

Not to mention that we teach our kids that lying is wrong.  How can we teach them this and then get a doctor to basically lie for us? 

Now, if Maura is actually truly diagnosed with autism someday, I wouldn't have a problem with it.  But right now, to get one under false pretenses just to have some sort of label - well, I just can't do that.

Tuesday, December 02, 2008 5:49:36 PM (Eastern Standard Time, UTC-05:00)    Comments [0] 

The four weeks before Christmas are always busy, especially what with a small herd of children to get presents and outfits for, the extra time it takes to just get through a regular shopping trip through Target, trying to get decorations up, figure out what to get the rest of the large families we both hail from, etc, etc.

This year, to add to the hectic fun, Maura has been signed up for a special four week therapy, Applied Verbal Behavior, which is at the Kaufman Center.  We're lucky enough to live about an hour and fifteen minutes from this nationally known speech therapy center, it would be a shame not to take whatever advantage of it that we could.

Of course, it means driving an hour and fifteen minutes each way every day.  It also meant that winter weather blew in just in time for me to drive through it all.  I've packed a small bag for in case we get stuck in that town, which hopefully I never need to use.

The good news is that gas prices have gone down a lot.  Enough to not make it hurt to drive the Suburban there and back.  I got all giddy the other day, filling up the tank at $1.54 a gallon - cost just under forty dollars to fill up.  Woohoo!

It's too soon to tell if any of this is taking affect with Maura, though her preschool teachers said on Wednesday that she was very chatty and verbal and whatever we were doing, to keep it up.

In the meantime, we also are getting to deal with a stomach bug, pink eye, and a poor bruised up Maura who fell down the stairs yesterday.  She's sporting a nice lump on her forehead and a bruised knee.  And then woke up with pink eye today, which Miriam was nice enough to share with her.  Poor kid. 

Which leads me to a Handy Tip - when Miriam showed us her pink eye earlier this week, I picked up this item, with the hopes that it would help a little until I could call the doctor the next morning.  I didn't need to.  This took care of the pink eye all by itself!  Oh, neither girl has enjoyed getting the eye drops, but they work.  Saved me a couple trips here and there.  Of course, I'm not a doctor, I've not played one on tv, so feel free to consult an actual doctor for advice on pink eye relief :)

Saturday, November 29, 2008 7:12:18 PM (Eastern Standard Time, UTC-05:00)    Comments [0] 

Wednesday is Dance Class Day.  I thought this would work out great - Miriam has dance at 5:30, Maura right after Mim's class.  One trip, two events covered, less running around for me, and all just a couple blocks from home.  Even better, two of my friends have their daughters in Maura's class, so I can chat with them. Ooo.  Adult chatter.  How fun!

I did not take into account Maura's absolute love of dancing into this equation. 

So what happens?

About 2 pm on Wednesdays, Maura catches sight of her dance outfit and insists on wearing it. 

Then Miriam gets home at 4 pm, snacks for an hour, then we battle over her hair for fifteen minutes.  She wants it down.  She wants it up.  I'm brushing too hard.  She doesn't like the pony tail holder.  She wants a bun. 

With barely any time left, we manage to get girls into the car and drive the three blocks over and park.  Miriam promptly leaps from the car (dance bag optional) and goes running into the building.  Maura promptly starts shrieking because Miriam has left without her.

From 5:30 to 6:10, I wrestle an angry Maura who doesn't understand why she can't be in the room with her beloved Mim-Mim.  She'll go to the door and shout "Mim-mim!  Mim-mim!", then screech as I drag her away.  At some point, we either go outside (which is less of an option now that it's thirty-something degrees out and not going to get warmer), or go for a walk around the building.

At about 6:10, my friends and their daughters start to arrive, which distracts Maura from torturing me for torturing her.

Then Maura goes happily into dance class and does wonderfully for her time period.  Meanwhile, Miriam spends her waiting time whining to me about how bored she is, are they done yet?, can I go home?  Why can't I walk home?  Blah blah blah.  The Gameboy does distract her for a bit, as does food and snacks.  Despite her hour long snack fest after getting home from school. 

At 7 pm, the fun is all over and I get to take a once again mad I'm keeping her from her beloved dance Maura to the car, where she proceeds to kick and screech about having to leave.

But for those 45 minutes in dance, my girls are extremely happy and it really does make it all worth the while. 

The kicker?  I was informed by the other moms that the two weeks my mother-in-law brought the girls to dance class while we were in Ireland, Maura didn't screech or scream or flail at all.  She was just lovely.  Little stinker. 

Wednesday, November 12, 2008 3:01:45 PM (Eastern Standard Time, UTC-05:00)    Comments [0] 

Maura's been singing it this morning*, so what the heck?  Why should I be the only person with it stuck in my head?

*note that Maura's version is more "Bob bob ba bans, Bob bob ba bans, Bob bob ba bans....Bob bob bob BOB!"

Okay, there's been an addition - I'm also adding "The Campfire Song Song" - also by the Spongebob.  My boys love the Camping episode, with this song...to the point that Collin sings along to it every time.  Which cracks me up. 

Monday, August 18, 2008 10:29:38 AM (Eastern Standard Time, UTC-05:00)    Comments [0] 

So last Saturday, I bought a loaf of bread.  On Sunday morning, Josh went to make french toast and asked me where the bread was.

"On the counter."  I replied.

He held up the bag of bread...which only had four slices left.

"Check the breadbox."  I suggested.

He did. The breadbox was empty.

Now, we didn't have grilled cheese for dinner, nor did Miriam make "cakes" out of several pieces of bread, like I would do as a child.  That left only a couple of scenarios.  Either the dog at a bunch of it, it got dropped and spilled onto the floor and someone threw away 27 slices of bread, or Maura was somehow involved.

Today, we found our answer - scenarios A and C.  We discovered this as Josh and I sat here at the table, on our laptops, and Maura comes in with three pieces of bread and the dog following her.  She stops, the dog sits, and Maura tosses a piece of bread to the floor.

We hide a lot of things from this child, but bread?  That never made my list of things to keep away from Maura. 

Friday, August 08, 2008 12:46:40 PM (Eastern Standard Time, UTC-05:00)    Comments [0] 

Okay, so I actually don't find the term "retarded" offensive when used correctly.  I'm pretty relaxed about these things, even joke that we should buy a short bus and paint it up all Partridge family style. And as you can tell from my previous post, I can see the humor in our lifestyle at times.

This isn't one of those times.

In the new movie "Tropic Thunder", with Ben Stiller, Jack Black and Robert Downey Jr., there is a scene that uses the line "Never go full retard." , as two characters are talking about acting and a movie the Ben Stiller character did called "Simple Jack" - as you can see, the poster reads "Once upon a time, there was a retard..."

My friend Joe sent me the link about this movie and I am so disappointed. I actually saw the previews (w/o the Simple Jack reference), thought it looked funny and wanted to see it. I like a lot of Jack Black movies.  I thought it was something Josh and I could go see together.

Now, not so much.

Granted, I could be biased b/c I hvae a child who could eventually get the diagnosis of "mental retardation", and am not looking forward to the day some snotnosed tween says to her "What are you, retarded?" in that horrible nasty tone. However, since I am usually very laid back about things and the first to crack a joke about how "special" we all are...that this gets to me tells me that this is probably pretty damned offensive to others in similar boats to ours. 

So, you've been informed.  You can make your own decisions about these things.  I guess the moral of the story is, before making fun of "retards", remember that there is a face behind the joke.  The face of a person someone cares about. 

Thursday, August 07, 2008 12:41:37 PM (Eastern Standard Time, UTC-05:00)    Comments [0] 

Maura and I were out and about town all afternoon.  She saw her neurologist and then we ran errands.

Okay, so this may be too much detail for some, but Maura is five, her bladder is ready to potty train but her mind isn't.  So she wears pull ups.  She can remain dry for hours and then the floodgates open.  I am usually prepared for such things and make sure I'm armed and ready for whenever this happens.

So we went to Target, which took forever since Maura kept throwing stuff onto the floor from her seat in the cart, then wanted out, then kept wandering off, blah blah the usual thing.  We leave, and I notice that the hem of her sundress is damp.  I peek at the pull up and yep, it's reached full capacity.  We're at the car and I realize there is no discreet way to change her at the car (maybe if she was two years old, I could get away with it, but five?) 

I decide to just run back into Target with her and use their very clean facilities to change her.  Now, it's a little after 6 pm, it's very busy, all the "heading home from work" shoppers are out, traffic is at a high, and we're trying to dart across the parking lot to the store.  Only Maura trips in the middle of the driving lane...she trips because her pull up has fallen to her ankles.

There I am, in the middle of traffic with a child with a fallen pull up.  Greeeeeaaaaaat.  I decide to just lift and run her to the curb.  I then quickly whip the pull up back to its intended position as discreetly as possible.  We go to walk into the store and bam.  Pull up falls again. 

I will be honest...I considered just ripping the sucker off and putting it in the trash can right next to us.  But visions of her then peeing all over the sidewalk went through my head.  So I yank the sucker back up. 

And then I laughed.  And Maura laughed.  And then I noticed people around us, on the sidewalk, in their cars, crossing the parking lot, are also giggling at us. 

It was funny.  And it was a classic case of "sometimes, you just gotta laugh".  It was also one of those times I can hear my therapist say "It's a good thing you have such a good sense of humor." 

But talk about extreme diaper failure!  I mentioned to her that it would be nice if she potty trained as I picked her up and carried her to the bathroom.  I wasn't risking that darned thing falling down inside the store! 

Wednesday, August 06, 2008 9:10:39 PM (Eastern Standard Time, UTC-05:00)    Comments [0] 

That's the bill I got today for Maura's orthotics.  $770.  Thank goodness it said "This is just a statement, waiting for insurance to pay".  Or else I might have had a heart attack on the front lawn.

Really.  $770.  For molded plastic that slides into the shoes.  No straps, no velcro, no padding. The AFO's that we got that went up past her ankle, had straps and such, those were $1700.  So by comparison, these are quite the bargain.  Either way, glad insurance covers them. 

Saturday, July 12, 2008 1:13:22 PM (Eastern Standard Time, UTC-05:00)    Comments [0] 

I snapped this picture of Maura on the 4th.  Such a pretty girl!

Monday, July 07, 2008 8:42:32 PM (Eastern Standard Time, UTC-05:00)    Comments [0] 

I was joking to my friend Sue about how locked up our house is these days because of Maura's tendency to escape.  And laughed about the fact that we have baby gates in the girls bedroom window.

Sue told me I should post about that, as it might help someone else out.  I agreed.  So here it goes...

The girls bedroom windows are low, just a few inches off the ground, and open both from the bottom and from the top.  This wasn't an issue the first summer in the house, as Maura didn't have the strength or know-how to open the windows wider.  As long as I kept them staggered to a degree, we could have the windows open.

Last summer however, Maura nearly gave me a heart attack one day.  I was outside doing yard work as she napped.  I heard her cute little voice, looked up and saw her standing on the windowsill, having pushed the top part of the window down, and she was banging on the screen.

I grew up in Chicago.  There were always stories about kids falling out of windows.  Heck, my cat fell out of my second floor bedroom window when the screen popped out. 

Yes, I ran upstairs and got Maura and then started looking up window safety gear.  But it was going to take a couple weeks to ship, not to mention pinch the finances as that stuff is expensive!  Josh said "Well here, let's put a baby gate up for now."  Then stuck one of the adjustable baby gates in the window to block her a bit.

Hmmm...

The next day I went to Babies R Us and found really big baby gates.  I bought two and stuck them in the window.  They're great because they're tight enough that Maura can't move them, but if there's a fire, an adult or even Miriam, will be able to pop them out if need be.  They don't cover the entire window, but enough that the windows are no longer a danger to Maura.  And it allows me to rest a little more easily at night.

Tuesday, July 01, 2008 10:16:20 AM (Eastern Standard Time, UTC-05:00)    Comments [0] 

Sean and Mim were outside and I went out to check on them.  I told Collin to keep an eye on Maura, who was watching Spongebob and therefore, not really going anywhere.

Chatted with my neighbors for a bit, shooed kids inside for dinner.  Maura met me at the door....where I noticed she had something tied around her waist.

Collin decided to put a "tracking device" on her - aka some of the spy gear Sean was playing with today.  He tied it on with some holiday garland, which I'd been making fun little headwear for the girls with.  Since he didn't have scissors, she had it trailing behind her.

In a sense, it was quite ingenious.  All he had to do was push a button and she'd start beeping.  But I don't think he's quite up to actually babysitting her yet....

And for the record, she thought it was great.  A fun accessory that made noise.  As the second picture shows, it made her giggle. tee hee!

Monday, June 23, 2008 10:57:55 PM (Eastern Standard Time, UTC-05:00)    Comments [0] 

Maura can open the patio door all by herself.

Maura likes to let herself out into the unfenced yard all by herself via the patio door.

Maura can be very quiet and sneaky when letting herself out into the unfenced yard all by herself via the patio door.

I can see Maura standing in the road, after letting herself out into the unfenced yard all by herself via the patio door, from my bedroom window.

It's very hard to run and shout that Maura's out in the road with a mouth full of food.

Josh understands what I mean when I yell "Maura! Road!  Outside!" as I go running for the door.

A high chain lock works well to keep Maura from letting herself out into the unfenced yard all by herself via the patio door.

However, the high chain lock only works well if you remember to use it.

Yes, there's been a common theme to this week's lessons.  On Tuesday, while we're close to it, I shall stop at Babies R Us for those door alarms.  Until then, I think I'll tether Maura to me, so I know where she is at all times.  It's either that or never blink again.  Because that girl has gotten fast!  Sure, the other three have all gotten out by themselves here and there but A) they also understood that one shouldn't wander out onto the road and B) they understood when they were told that they were not to go outside without asking first.

Meanwhile, I shall thank God once again that Maura went out onto the dirt road, that has about four cars a day go down it slowly, instead of the paved road, that people come speeding over the hill on a consistant basis. 

Sunday, June 15, 2008 10:13:50 PM (Eastern Standard Time, UTC-05:00)    Comments [0] 

So it's Friday already.  Wow.  Fast week. 

Maura's officially five.  She had a fun birthday, loved getting to open presents that were for her, and actually getting to blow out all five candles (with some help.)  Her favorite gift has been the Wonder Pets Flyboat toy.  Miriam and Sean have been having fun with all the wooden playfood I got for Maura's kitchen...though Maura did feed some imaginary mac and cheese to a Wonder Pet.

Lucky the Duckling is still with us.  I spent an hour on Monday searching for duck food that did not come in a fifty pound bag.  I'm half Irish - buying that much duck food would ensure that he'd die the next day.  However, the feed store in the next town sold duck food by the pound.  So for eighty cents we left with a pound of duck food. 

The kids still love the duckling.  Josh and I have become mom and dad duck.  He's gotten pretty used to us to.  Oh sure, he tries to attack the Big Hand when it reaches into the cage to pick him up, but once in the Big Hand, he settles right down.  He likes napping on one of us as well. 

Of course, putting a duckling into the family mix has made for a couple interesting moments.  Like when Sean was cleaning out the duck bin, cut his finger, needed a band-aid, but meanwhile, I'm holding the duckling as the cat watches, trying to figure out what this peeping thing is, and Maura's smearing frosting on the storm door while trying to get outside. 

Yep, all normal.

Friday, May 23, 2008 7:58:51 AM (Eastern Standard Time, UTC-05:00)    Comments [0] 

In honor of Maura's birthday, this week's SotW is one of her absolute favorites - "The Old Black Rum" by Great Big Sea.

Yeah, there's nothing like having to explain to the preschool teacher that if your daughter happens to say "rum", it's because of her favorite song...uh...it's traditional music...really, we're not alcoholics.

FYI - the video is from the Great Big Sea CD/DVD set - which I highly recommend - and has the closing credits on it.

Monday, May 19, 2008 9:32:03 AM (Eastern Standard Time, UTC-05:00)    Comments [0] 

That's a three month supply of Maura's seizure meds.

We had to switch to the online pharmacy delivery service if we wanted the insurance to keep covering it.  Not the most ideal, but not terrible either.  Except that at the pharmacy,  I could get a small bottle to put some of the medication in so I could easily transport it in my purse (she gets it three times a day, so it's good to have it on hand at all times.)

Today, I had one of the boxes with the big bottle in the diaper bag, as I don't have a smaller one right now that will work.  Then promptly forgot I had the gianormous bottle in said bag and wondered why the diaper bag felt so heavy.  Duh.

Collin asked me a few weeks ago how much longer Maura would have to take her medicine.  "Two years." I said.  "And that's if she doesn't have another seizure."

"Whoa."

Whoa indeed.  At least it works for us and has no lousy side effects. 

And in other news - look at my girl swing!

Friday, May 09, 2008 4:31:05 PM (Eastern Standard Time, UTC-05:00)    Comments [0] 

And also with you.

Sorry, Catholic humor.

Maura has gotten into having light saber duels with Sean.  It started the day Sean was looking for someone to duel and Maura was the only one interested.  Sean is very good about fighting her.  Calm, careful...okay, until just this moment when he accidentally whacked her in the head.  Luckily, not hard at all.  Maura has laughed it off.

Saturday, May 03, 2008 9:16:11 AM (Eastern Standard Time, UTC-05:00)    Comments [1] 

...to get a side car for Josh's motorcycle, for Maura to ride in?  Josh's bike takes a whole lot less gas than the Suburban...

Okay, so I'm aware that side car-ing Maura would probably be all shades of illegal.  But we have all these appointments again, which requires a half hour to an hour drive each way for them and gas prices are getting kinda scary for someone who has a Suburban.  I could take the mini van...sigh...we need to buckle down and get that smaller car we keep talking about getting.

Today, Maura and I head off to get her fitted for new AFO's. (Ankle Foot Orthotics for those of you not in the know - basically, braces for her feet.)  Today we go in and they cast her feet and ankles.  Then we'll have to go back again in a couple weeks to pick them up and make sure they fit right.

Tomorrow I go chat with my therapist - yes,  I have a therapist.  Really, I think anyone dealing with a special needs child should have one.  It can help with any guilt a person might be feeling here and there about things, or make you face stuff you need to face.  Like the time I wished aloud for a normal life.  My therapist told me that I can't have a normal life, I would get bored with normal.  She of course was right.  Heck, I wouldn't know normal if it smacked me in the face!

But back on my traveling - next week I take Maura to get a speech evaluation.  Which means driving into the Detroit burbs during rush hour.  Ooo fun.  But this place is supposed to be one of the best and the woman thinks she could figure out Maura.  We'll see.  I won't get my hopes up, since Maura is the princess of puzzling professionals. 

Right now though, I'm wishing we lived in an area like Chicago, that has great public transportation.  Here...not so much.  So maybe we'll go price more gas-friendly cars this weekend. 

Wednesday, April 30, 2008 10:06:57 AM (Eastern Standard Time, UTC-05:00)    Comments [0] 

I went to the bathroom just now (silly me, you think I would learn that going to the bathroom is just an open invitation for kids to run amok...)

I came out to find Maura sitting at my computer, with a new page open, chatting on the cell phone ("Hewoh?  hi.  no.") and the rest of my mocha gone.

Now Josh and I are trying to figure out who she is more like - him or me.  It's a toss up I guess.  Right now though, I'm interested to see how that mocha is going to hit her.  Life might get very interesting in a half an hour...

Friday, April 18, 2008 7:39:31 AM (Eastern Standard Time, UTC-05:00)    Comments [0] 

That's what she was saying when I took this picture - I'm constantly amazed at how her little brain works!

Thursday, April 17, 2008 8:07:43 PM (Eastern Standard Time, UTC-05:00)    Comments [0] 

On a local special needs parenting list, someone asked if anyone was going to go to the march on the capital to get insurances to cover autism therapies.

My first thought was "But what about the rest of us?"

I've heard parents of children with autism complain about the lack of therapies available to them.  Well guess what?  If your child "just" has delays, you get even less.  I've seen lots of intensive speech therapy programs that would be great for Maura...but the catch is, Maura would have to be autistic to qualify.  She doesn't have autism, we ruled that out a couple years ago. 

I'm not saying that insurances shouldn't cover these things.  But instead of specifying it to just children with autism, why not widen it to any child with a delay that might benefit from speech/physical/occupational therapy?  Why would that be so hard? 

The thing is, if they do pass a law requiring insurances to cover autism therapies, then parents like me caught in this grey zone of no diagnosis might just get desperate enough to get someone to diagnose their child as autistic in order to get the help they need...even if the child is not autistic.  And then the numbers will rise some more and people will say "See!  Autism is rising!  It must be <insert your theory here>!" 

I once argued that the rise in autism numbers could be partially due to people getting the diagnosis out of a lack of anything else to label them.  I argued this because it's what I've been told in relation to Maura - that by elementary school age, if she doesn't have a diagnosis, they'll label her as PDD-NOS so she can qualify for services.  Now, very technically, she does have Pervasive Developmental Disorder, in the fact that she has a developmental disorder.  But does anyone who has dealt with her consider her any form of autistic?  No.  Yet PDD is falls in the autism spectrum.

Is your head spinning yet?

Anyway, I just think if we're going to pass laws, let's do it to benefit as many people as possible!  Let's not be selfish!  Let's let ALL kids who need it get coverage for therapies! 

Monday, April 14, 2008 11:55:08 AM (Eastern Standard Time, UTC-05:00)    Comments [0] 

Maura seems to have a sinus infection or something.  She's all congested and coughing and it just hasn't gotten better.  So I took her to the pediatrician, since this has been going on for a couple weeks.  The doctor wrote a prescription for some meds and sent it to the pharmacy at Target.

Mind you, I was just there yesterday picking up Maura's big bottle of seizure meds for this month.

The pharmacist on duty was not the one we dealt with yesterday, so went over the latest med and then said "Now are you familiar with how our bottles work?"  Their bottles have the stopper and syringe medication doser thingy, so you put the syringe-y thing in the hole of the stopper, turn the bottle upside down, fill syringe-y thing, put bottle back upright, then remove syringe-y thing (and you don't want to do it while the bottle is still upside down, or even sideways, because it will shoot liquid at you...)

Am I familiar with how their bottles work?  Hmmm.  Let's see.  I've got one on top of my refrigerator, a smaller one in my purse.  I have about ten of the syringe medication doser thingies scattered all around my kitchen, some clean, some used, one chewed up by the dog today.  I've been doing seizure meds three times a day for the past three months...

I just laughed and said "Oh, I am WELL aquainted with your bottles." 

Wednesday, April 09, 2008 6:08:42 PM (Eastern Standard Time, UTC-05:00)    Comments [0] 

Maura had a big first today.  Today, for the first time in her life...she got her nails painted.

She was admiring my orange nails so I asked if she wanted some.  She didn't quite get the idea, and slightly freaked when I went after her big toe with some weird thing.  But then...she saw her orange toenail...her face lit up as only a little girly girl's can.

So we did the rest. 

After we ooo'ed and ahh'ed over her toes, I told her to show daddy and ask him if he liked them.  She went over to him, tapped him on the back and said "Do you like?" 

I couldn't just stop at her toes.  I did her nails too.  Well, her fingers, not her thumbs.  She's a thumbsucker.  In an ironic twist of fate, in using my more wholesome nail polish from Whole Foods, I painted her nails in University of Michigan colors.  Everyone around here will think I did it on purpose!

Tuesday, April 01, 2008 7:29:29 PM (Eastern Standard Time, UTC-05:00)    Comments [0] 

I love music.  I love songs with good lyrics that I can relate to and I can sing along with.  Music has always played a huge part of my life.  I can hear a song and be taken back to a moment in time or am reminded of a person or event.

So I bring you a new blog feature - Song of the Week. 

Our first SotW - Natalie Merchant's "Wonder".

Why this song?  Because it reminds me of Maura and what we go through with her and her medical stuff.  She is a wonder, she is God's own creation.  She is able, she is gifted, she does not suffer, and we all deal with her with love and patience and with the faith that she will make her way.  She already does.

Monday, February 25, 2008 9:56:52 AM (Eastern Standard Time, UTC-05:00)    Comments [0] 

...but tonight, I love it even more.

As we got out of the truck after picking kids up from Religious Ed, Maura stopped and looked up into the night sky.

I asked her "What are you looking at?"  I already knew the answer, but I thought I'd give it a shot.

Maura smiled, pointed up at it and said "Boon!"

I said "The moon?  Where is it?"

She pointed up again.  "Dare!"

My little girl likes the boon.  And that makes me incredibly happy.

Monday, February 11, 2008 7:45:44 PM (Eastern Standard Time, UTC-05:00)    Comments [0] 

If there had been any chance whatsoever of me to still be in the running for Mother of the Year, I completely lost it today.

Why?

Because Maura got out of the store.  Without me.

I was checking out at Joann's, and the kids were running amok.  I told Sean three times to put on his coat AND zip it up (somehow, the boy doesn't get what it means to be 2 degrees out), I asked Collin to put the cart away, the girls were dancing about with my scarf a couple feet away.  I pull out my wallet, go to pay, look up and Maura's outside the store. 

I think I may have started some people when I yelled "Oh my God!" and made a mad dash outside to grab Maura.  The good thing was that she stopped just on the other side of the doors, so they were actually still open.  It's also a good thing that she didn't just keep walking forward, which would have taken her straight into the parking lot. 

Who knew the girl could move so fast?  Or that I could move so fast?

The moral of the story - next time you see a mother with her child on one of those kiddie leashes, it's probably because their child did something like Maura did today. 

Sunday, February 10, 2008 4:50:45 PM (Eastern Standard Time, UTC-05:00)    Comments [0] 

But Collin has been home from school for two days now with a headache and slight fever.  It's what's going around this time.  He was kind enough to share it with me though.  Wasn't that sweet?  My friend also has it, poor thing.  Hopefully it'll be a short lived thing that doesn't attack every single family member. 

In other news - Maura asked for milk in her cereal today! 

Remember, Maura barely talks.  But since starting seizure meds, she has become pretty darn verbal.  We are starting to have little conversations with her.  One day, it was which cereal she wanted.  The other day, we conversed about how being poopy wasn't fun, with me doing most of the talking but her adding "No" in appropriate places.  Which gives me hope she'll be potty trained before she's 17.

But today, she wanted cereal.  She handed me the box.  I poured some in a little bowl and handed it to her.  She looked at it, looked at me, handed me the bowl and said "More."

So I poured a little more cereal in and handed it back.

She looked at it again.  "More!"

"More what?"  I asked.

She babbled and gestured and I asked again "more what?"

"Milk!"

Alrighty then!  Let's get out the milk.  Yea milk!  Let's get a spoon!  "Poon!  Poon!"  And then she went off and ate her bowl of cereal with milk.

What's really funny is that she's never gotten cereal with milk.  I hate milk in my cereal.  She must have grabbed Sean's bowl one day and decided she liked milk in her cereal.  We're just happy she's able to tell us these preferences.  Heck, I'd eat milk with cereal if she told me to!  It's probably a good thing she doen't know what powers she'd have if she was more demanding.

Friday, February 08, 2008 4:09:47 PM (Eastern Standard Time, UTC-05:00)    Comments [0] 

When people have heard about Maura's seizure and abnormal EEG and the need for medication, they get all "Oh no!"  And honestly, before this hit our life, that would have been my reaction.

But because this is us and our life and our Maura, there is a twist.

I noticed a week after we started the meds, that she seemed to be speaking more.  Not sentences, but a few new words.  For someone who can go all day with saying maybe five different words, new words are a BIG deal.

Then one of her therapists noted that she seemed to be speaking more too.  And she was following directions better at school.  Minor little changes in one sense, but slightly major ones at the same time.

Of course, this leads to theories.  Maybe Maura was having seizures when we didn't know it.  Not all seizures are what you see on tv, where the person falls and shakes.  Many are where a person blanks out for a moment.  Or their thumb jerks.  Or they just feel fuzzy.

This morning at school, Maura said "Good morning Miss P." , trying to say her teacher's whole last name.  Sure, not every word was crisp and clear, but she tried to say all four words.  Four words in a row.  We've still been working on combining two words. 

Maybe it's all just coincidence.  But it might not be.  And really, if having to be on seizure medication causes her to be able to think more clearly and talk more, then you know, maybe this hasn't been such a bad thing to happen to us.  Maybe it's actually a good think.

I'll take it either way.  Especially when I say "Really?" and Maura answers back "Ree-wee." 

Thursday, January 17, 2008 9:39:05 PM (Eastern Standard Time, UTC-05:00)    Comments [0] 

I can't keep up with all of Maura's gear. 

To go to school now, we need to...

- make sure she's got her foot orthotics on before putting on her shoes

- find her glasses

- put on her medical id bracelet

- make sure I have the "epi pen" to leave in her locker while she's there (we keep the other one at home at all times).

That's on top of the regular stuff - backpack, folder, coat, mittens, hat...I keep her spare boots and snow pants in her locker at school so I don't have to haul those about as well.  Oh, and then I make sure there are enough diapers/pull ups/wipes stocked at school. 

I just made myself tired!

Monday, January 14, 2008 5:39:02 PM (Eastern Standard Time, UTC-05:00)    Comments [0] 

Just over two weeks ago, Maura had that seizure. One week later, we left the neurologist with all sorts of new things, including a different outlook on things.

I joked to the neurologist that Maura must have sensed I got comfortable and felt like she had to shake things up.  I was getting comfortable.  I was once again in that nice place, where I was okay with her not having a diagnosis, okay with the unknown, okay with Maura being Maura.

Oddly enough, I'm still pretty okay with all that.  Everyone it seems has said to me that maybe finally, because of this, we'll figure out what's going on with her.  Yes, that's a possibility, but it's just as much of a reality that we won't get any answers out of this, just more questions.

What I do feel is that I am now in at least the minor leagues.  Maybe not major leagues, but definitely the minor leagues.  I carry medicines around in my new big bags.  I ordered medical id bracelets.  I've got a chart on the fridge to check off when we give Maura her thrice-daily meds.  If Maura acts weird, Josh and I start circling her like hawks until we're certain it's just her usual weirdness and not a seizure about to happen. 

From Maura's view point, not much has changed.  I stick medicine in her mouth three times a day, but she likes it, so it's almost a treat for her.  Otherwise, her world continues as usual. 

The ironic part - in the past week, Maura's become more chatty.  Like, actual words come out of her mouth.  Yes, I'm keeping track and yes, I will be going over this with the neurologist when we go back in four weeks.  It could all just be coincidence though. 

And in case any of Josh's friends and collegues are reading along - I've been amazed with just how many of them have emailed and called to check up on Maura, see how she's doing.  We have really appreciated that! 

Sunday, December 30, 2007 11:03:53 PM (Eastern Standard Time, UTC-05:00)    Comments [0]