Wait...What?! Dr. Pediatrian Dentist said Dr. Wonderful Dentist will be calling me?!

Oh boy.  I just got off the phone with Dr. Pediatric Dentist, after talking with him this weekend.  Dr. Pediatric Dentist's secretary called me and said:

Dr. Pediatric Dentist just got off the phone with Dr. Wonderful Dentist 20 minutes ago.  Dr. Wonderful Dentist will be calling you.

I'm not sure what he will be calling you about.

COME ON!?  Really?  Why can't I just shake this guy?!!!  I don't want to go back to Dr. Wonderful Dentist.  He sucks.  I broke up with him yesterday on my blog.  I even wrote that beautiful poem and everything!
Let's rewind to recap what happened on Saturday when I called to get an appointment with the original Pediatric Dentist for the cavity and a full mouth x-ray.  Remember, Dr. Pediatric Dentist was the person who referred us to Dr. Wonderful Dentist back in May.

Initial Phone call with the Secretary went something like this:

Me:  Hi, I'd like to make an appointment to have Dr. look at a cavity and at the same time get a full mouth x-ray for a periodontist we are also working with.

Her: Wait...why are you calling us if you are under the care of Dr. Wonderful Dentist?

Me:  Well, Dr. Wonderful Dentist said he has a cavity, wanted the periodontist to look at it, and now it is hurting him.  Since the periodontist wanted a full mouth x-ray, I thought we could work it out to get both done.

Her: We don't know anything about what is going on.  We haven't gotten a letter or a phone call from Dr. Wonderful Dentist.  Nor from a periodontist.

Me:  That is odd, Dr. Periodontist said he talked with your office.  But anyway, Dr. Pediatric Dentist referred us to Dr. Wonderful Dentist, so maybe you can talk with him and he'll understand and get us in.

Her: You haven't been in here for a cleaning since December 2011.

Me:  We've had his teeth cleaned three times since May by Dr. Wonderful Dentist.

Her:  I don't understand why you want to come here and not go there.

Me:...just please tell the doctor....yada, yada, yada...

So, Dr. Pediatric Dentist called me back.  Unfortunately I was in the waiting area at gymnastics, so all these moms had to hear me explain that there is something genetic, how we are working on with the geneticist.  I'm not worried right now about why they are falling out...I want to know what to do about the cavity.

Then I told him how disappointed I've been with Dr. Wonderful Dentist.  He apologized & said his intention wasn't to have it be hard on us sending us to him, but instead was really trying to help.  There were tears, yes, tears...and all this was in public.

How did the call end?

Dr. Pediatric Dentist and I hung up the phone with him saying "I still want to talk with Dr. Wonderful Dentist, to get an update on what is going on.  We'll work on it from there."

SO - I get a call Tuesday from Dr. Pediatric Dentist's office.  They said 'Yes...you were right, Dr. Wonderful Dentist is impossible to get a hold of.'  Yes - we all knew that....then...they told me to go back to him.

What the hell?!  Dr. Wonderful Dentist is exactly like the Wizard of Oz...his name precedes him.  No one wants to touch my son now...they don't want to step on Dr. Wonderful's toes or something.

Here comes MORE DRAMA:
Yesterday afternoon I got a call from Dr. Wonderful Dentist's secretary, asking if we could come in Friday to have the tooth looked at.

I said NO.  I told her how I really felt about Dr. Wonderful Dentist.

She replied and said...he would want to hear what you have to say.  Why don't you come in on Friday and tell him.

I told her NO.  I'd rather talk with him and tell him over the phone.  The service of care we have been getting from him has been utterly disappointing and I don't think it is in my son's best interest to have him care for him anymore.

So...guess where I am now?

Waiting for a call back from Dr. Wonderful Dentist.

Seriously! Seriously?  Again...I'm waiting for him to call me back?

Oh yea...and I made an appointment for my son next week to see a completely new dentist.

Sorry, Charlie. I have the ruby slippers and I hope your hot air balloon takes you far away

I called our original pediatric dentist this weekend to try to get arranged the fix to the eldest's cavity.  He has been complaining all week about his tooth, and now says a different area hurts as well.  The thing is...with sensory issues, his pain tolerance is extremely high...so anything to hurt him, has to be excruciating to the average Joe.

The call into Dr. Pediatric Dentist was the typical struggle of explanations, justifications, call backs, tears, and pleas.  I'll post about the details tomorrow, but where I left off...'Let me call Dr. Wonderful Dentist before we do anything, so I can get up to speed.'  Uh, up to speed?  There really hasn't been anything done, but I have faith in you, Dr. Pediatric Dentist...and I hope to hear back from you this week.

In the meantime, my anger ensues about Dr. Wonderful Dentist.  One of the things Dr. Pediatric Dentist's office said "We don't know anything that is going on, we haven't gotten one letter from Dr. Wonderful Dentist."  Yes - I know...he sucks.  He has been nothing but the Man Behind the Curtain, the Wizard of Oz fooling everyone of his 'greatness.'

So, for 7 months we had the promise of a resolution to my eldest's teeth and we have gotten no where but directions to take the long way down the yellow brick road, ending at the Emerald City.  What we found though, was the curtain...and the man...'just a man' behind that curtain.  All this time because of Dr. Wonderful Dentist's promise, it seems like everyone wants him to 'continue' to take the lead.  Well, I now realize, standing here with the broomstick in my hand, it is still me with the power to do it all.  I have the ruby slippers and it is time for me to continue the trek to the right path.

I'm watching you float away in the hot air balloon, Dr. Wonderful Dentist, just like in the movie.  We may run into each other at some point again...and I will smile at you.  But when I click away in my ruby heels, I will secretly hope you have more guilt on your shoulders than you can bear.  I don't really wish you ill-will, but I wouldn't mind you having many, many nightmares of a few wicked witches while you sleep.

There have been many doctors and therapists that we are no longer working with.  Not every experience will end in a good working relationship of care.  But none of the breakups from these former healthcare providers have left me so beat down as this one has.

For my own closure, I've decided to pen a little poem about my experience with Dr. Wonderful Dentist:

Charlie is his name,
Zero focus is his game.
Every assurance he has made,
Reneged promises is all we've gained.

Each night we pray, there will come the day,
Peace and easiness will follow as we rise.
And solutions to our hardships we will gain,
Kindness from all those we love, through all time, is our daily prize.

So long, Chuck.

A tooth update: meeting Dr. Periodontist

Last week we met with the periodontist.  It's been a slight whirlwind of a couple weeks, with some Thanksgiving rest peppered in there, that I haven't updated on what is going on here.

First thing, Dr. Periodontist appeared knowledgeable, but the one thing I really liked: he was very responsive.

He confirmed that the loss of teeth is not from an infection (which we all knew).  Meeting with the geneticist this quarter, we have a new plan to do further testing to hopefully figure out what is going on genetically with our eldest.  With that further testing, available now from new technology, hopefully we can get an affirmative answer on why he is losing his teeth.

Okay.  Another waiting game to find out what the cause is...IF we ever find out the cause.

But, Mr. Periodontist, what about his cavity?

His answer:  I don't see a point to fill it, just like Dr. Wonderful Dentist stated, so let's have Dr. Wonderful Dentist follow it.

My mommy instinct says - Dr. Periodontist thinks that Dr. Wonderful is on top of it...but I think Dr. Wonderful was passing it onto Dr. Periodontist.  I think I should probably make an appointment at our original pediatric dentist to look at and resolve.  Noted!

So, we aren't done with Dr. Wonderful Dentist yet.  Good thing I didn't blast his name all over the place.

However, unlike Dr. Wonderful Dentist, this periodontist already sent me a follow-up letter in the mail.  I have much faith in this periodontist.

For my friends who aren't used to visiting 'specialists,'  you typically get a summary letter after every visit.  This summary letter is addressed to the attending doctor, like the pediatrician, and they usually copy you.  This is along the same letters Dr. Wonderful dentist was going to send to the head of Children's genetics, and also our pediatrician...neither which he has penned.  But anyway...

What the next steps are:
> Dentures/Replacements?  His answer:  Not yet.
> Get a full mouth x-ray from his old pediatric doctor & come back and visit Dr. Periodontist in March, I can even plan it the same day we are supposed to get back to Dr. Wonderful Dentist
>  The only caveat, we need to get back to Dr. Periodontist if any more teeth are actively falling out before our next target appointment

...everything works out...I'll get back to our original dentist and have his full mouth x-ray done & also have him look at the cavity.  It is amazing how things can get scheduled well.  Just like the ear tube surgery on the same day as the MRI!

I managed this scheduling magain again for appointments coming up in December.  Just yesterday I managed to get the first appointment of the day with the ENT for the same day we are traveling downtown for an afternoon appointment with the Endocrinologist.  2 appointments in 1 day...AWESOME!  Also...that morning, we will fit in some special genetic lab work for the 3 of us: eldest, wonderful husband and me.

Everyone has a super power.  My super power?  PLANNING :)

Thanksgiving

It is such a grand holiday.  My mom hosts the dinner every year.  This hear she had around 60 people.  Yes, 60 relatives all at her house for dinner.

It was busy and that is wonderful and cool.  All these people (many who were not present) come from only my dad, his two sisters, and one brother.  Hard to believe that at this party of ~60 people I had only one aunt and two uncles present...the rest...we were all cousins.  There are 18 first cousins, and most have married and multiplied.

COUSINS.  They are great.  All my cousins on this side are older than me, but I love talking with all of them.  Most have children, some now adults and some still kids.  My three adore their older cousins and once the arrived at my parent's house...I couldn't find them at all.  That only means one thing:  They were having a BLAST.

This is the same crew we vacation with once a year in wonderful Michigan.  So we know each other well.

My favorite part of the night was when dinner was done and we were all sitting around a large table talking, laughing, talking, and laughing.  It was sweeted up a bit when my cousin C's delicious eclair cake was found in the fridge, forgotten to be brought out with the rest of the desserts.  The dozen or so of us who remained cheered and polished off that cake with no remorse.

Thank goodness for family...and elastic waisted pants!

How do you not take things personally?

Seriously.  How do you not take things personally?  I'd love to know.  I need to know.  I need to work on this.

I take everything personally.  I take work personally.  I take my kids personally.  I'm overly sensitive, I suppose.

Taking things personally is not always a problem.  For me, it means I can do things with drive and passion.  I put my whole self into it.  I try my hardest and do what needs to be done to make it successful.

Did you see that key word that is the core of my problems? success

I need to say to myself:  LET GO!

When your kids wake up 'off' and throw temper tantrums...it is not a reflection of what you are doing right or wrong this morning...it is just that they are 'off.'

When your work is wanting to load you up with things and you feel like you are drowning...it does not mean you can't handle your job...it means that there is just a lot work to get done.

It's the success-factor.  The fear of failure.

In the morning, like this morning...I try to rationalize.  I try to calm.  I try to meet people's needs.  But no matter what I do, nothing is good enough.  Nothing stops the screaming.  Nothing stops the crying.  Nothing stops it.

At work...the loads of work that they are roping me in to help get done...does not mean they think I will fix it alone.  Or that I even can fix it alone.  It doesn't help that the hot-head manager that I'm trying to help out, is as hot-headed as my eldest.  And his temper tantrums are basically like what I experienced today.

Don't both these people realize:  I'M DOING THE BEST I CAN!  GIVE ME A BREAK!

But there it is...the source of my agony...I can't take the lack of resolution weigh on my shoulders alone.  I can't take it personally.

It is in my nature to take things personally.  How do you not?  Really...I want to know...what tools & methods do people use to not take something personally?  Or am I forever doomed to my eventual self-destruction because I can't deflect this?  Is it something I'm born with genetically?  Is it tied to my horoscope sign?  Is it where I was born in birth order?

Help!!!!

Luckily, in the heat of the moment, there is still some ability for me to rationalize.  I called my mom this morning and she came to my rescue to help with the eldest and console me.  I called my boss, and have an appointment with him in 15 mins.  (Side note:  Not sure if telling my boss I'm drowning with anxiety is a good thing...but I'm going with it)  I'm getting people to help...but I am not sure it will help me fix the core of the problem:  Me.  I'm taking it personally.  I'm feeling like I'm failing.  It is all in me...how can I deflect it without self-destructing?

29 days for a 50 minute yield. A tooth update.

We met with Dr. Wonderful Dentist on Monday, 10/15.  He looked me in the face and told me he would be calling a periodontist by Wednesday.  If I don't hear back from him, call on Thursday, 10/18.

I called one week later 10/23.  Maybe that was my mistake. His secretary knew nothing about the outstanding call to the periodontist.  She would follow up with Dr. Wonderful Dentist and call me back on Thursday, 10/25.  I never got a call back.  Is anyone surprised?  They shouldn't be.

I called back on 11/9, the office was closed, but I left a message that went something like this:

Hi. Dr. Wonderful said he would be calling a Dr. Periodontist before we scheduled an appointment with him.  I'm most concerned about the cavity on the eldest's tooth, that Dr. Wonderful pointed out and wanted Dr. Periodontist to address.  It's been a month and he said he'd call him the week we met with him back in October.  I am concerned because I don't want this cavity to get worse.

Yesterday, 10/13...this is what happened:

3:51:  I got a call back from his personal secretary.  She said that Dr. Wonderful called Dr. Periodontist and they will call you (sigh).

4:41: I got a call from Dr. Periodontist's office.  We have an appointment setup for Monday 11/19.

I will bet all my money that Dr. Wonderful Dentist called Dr. Periodontist that same afternoon.  It took Dr. Periodontist no time flat to call us.  This means, that we waited almost a full month for a quick phone call & to get into Dr. Periodontist's office.

Am I mad?  Yes.  Am I annoyed?  Yes.  Do I despise Dr. Wonderful Dentist?  Yes.  Do I feel that visiting him has gotten us any further in our constant quest?  Maybe.

Am I done with Dr. Wonderful Dentist?  Maybe.

It is really hard to not think of him like a filthy little liar.  He isn't doing this pro bono.  And he isn't in our insurance.  So, for the 3 meetings we have had with him face to face...yes, for these 6 months, and all this promise of 'top priority', 'I'll work to get this solved', 'we will fix this'...I have only seen the guy 3 times.  And it cost us $328.  I will confess, I do feel like I've been scammed.  I think he also thinks we are a bit stupid, or naive...in the fact that we aren't calling him out or clearly furious at him when we see him face to face.  Little does he know, it is a constant moral struggle on my part to not to print his name in this blog.

The bottom line...if Dr. Periodontist can take over the oral care...I don't think I need to go back to Dr. Wonderful Dentist anymore.

Gotta stop crying in the morning

Last Thursday was the rude awakening back to my 'real' life.  Today, was not a good morning either.  I don't think this is a 'Thursday' thing, instead, a break in routine.

Here is the routine that seems to work for us in the morning:

Get the eldest up, literally pick him up out of his bed, carry him to the kitchen table and continue with the morning.

This routine seems to go pretty well.

What exactly is it that makes things go so horribly wrong?   With me in tears?  Yelling at my eldest son in front of parents and my father at school...sounding like a lunatic?  Angry and resentful at my son?  All before both him and I go on with our busy and demanding days (Seriously, his day is just as hard as mine...if not harder)

What happened today?

I was still in bed when the boys came in my room.  I was awake with darling daughter and we were just chatting.  Twin brother had a Lego magazine in his hand, and Eldest realized he didn't have his Lego magazine.

SHOOT - this is where the breaking point comes from.  Any kind of deviation, no matter how calm I am at addressing it...is really hard to manage.

I tried to stop & get everyone to the kitchen table, but it was already too late.  Screaming about the wrong bowl, Screaming that he doesn't want cereal or to eat at all...while I'm trying to get the twins started & searching the house (6 rooms of it) for this Lego magazine.  Couldn't find it.  No matter how much I tried to say we would find it for him...it wouldn't help.

So from there, it was a lot of wrong.  'I'm going to block this door', 'I'm going to annoy my sister because I'm not feeling 'right'', 'I'm going to dilly dally', 'I'm going to touch everything in sight'...if only I could really write how frustrating it is...but all if it comes to...this: Mom's patience and caring burning out...all within a 45 minute period: 7:00 - 7:45 am, and just downhill for the rest of the morning: 7:50 - 8:25 when I can finally drop him off.

Yesterday I had it right, things are hard for him.  But when things are hard for him, sometimes they are just plain hard for me.  I'm not proud of today.  We departed at the school door with both of us in tears.  My poor father just stood there, at the sidelines, seeing the tornado of a family we sometimes are.  Unfortunately, this is sometimes our reality.

I know what to do...I have to get us to a family counselor so we can figure out how to mitigate some of this emotion for all of us.  To get us to this family counselor...I need to find the paper I have her name written on & make the appointment...if I only had time to do that.  Yes, it would take 5 minutes...but I can't seem to find that 5 minutes, even though I know how critical it is.

LMFAO

I'm talking about the rap group LMFAO...not the Internet acronym for laughing hysterically (in nicer terms than what it actually stands for).

All this morning, I've been hearing in my head their song 'Shots, Shots, Shots.'  I wish instead it was the lyrics 'Everyday I'm shufflin'.

Last night was the first of hundreds, if not thousands, of my endearing eldest's daily shots of growth hormones.  If it isn't one thing, it's another for this kid.  But with every challenge, he takes it like a champ.

He took the shot like a brave big boy - didn't cry, didn't flinch, didn't give us a hard time.  We will see what it is like every night from here on, to see if we keep getting the same response.

Hopefully this new regime of medical intervention will give us what he needs to catch up on not only his growth, but also his strength.  If that is the case, maybe, just maybe, other things will finally start to be easier for him...like writing, sitting, walking, going up and down stairs, gym class, grooming, getting changed, coordination...it is our constant endeavor to help him along to make things easier for him.  What I want to make easier for him, is the normal the rest of us take for granted.

Brief reprieve from my life

Last week I had an opportunity to travel on business.  This meant, I got to be responsible for only myself, not take care of any kids, not do any housework, or homework, or therapies, or anything.

What did I do?  I ate, I learned, I socialized with co-workers, I shopped, I ate, I shopped.  It was great.  It was exactly what my life was like about 10 - 15 years ago.

I was miserable when I wasn't a mom.  I know that, and I don't want to go back to that place in time, but having a little respite did do me good.

What has been up since then?
> Dr. Wonderful Dentist still hasn't called me back about the conversation he was going to have the next day from our last appointment with the periodontist.  Are we surprised?  No...not at all.

> We met with our geneticist...and she has a possible condition/syndrome we are looking into, but requires more testing that I have to get okay'd with the insurance company.

> Endearing Eldest is starting a daily shot tonight for growth hormones.  A shot every day for the next 11 years.  I am dreading this for him.  To get pregnant with him, I had to take over 100 shots, some every day for about 4 months.  It was worth it, but for him, the end goal is still out with the jury to see if it is worth it.

> I attended my dear cousin's mom's wake and funeral.  She passed away and I'm so sad for my dear friend and my cousins.  It was a long while ago when she was first diagnosed with a brain tumor...it was a blog I wrote about my cousin on a pilgramage to Medjugorje and the letter I could write for petitions to Mary.  I prayed for her.  I know my cousin's mom is in heaven with Mary and Jesus...she was a wonderful woman.  And my cousin is a dear role model for the loving and dignifying care she gave to  her mother during her illness.  I hope I can do the same for my parents and my son.

> I went for dinner with one of my best friends at a glorious steakhouse, then to see the touring dance troupe from the show 'So You Think You Can Dance'; again, we were living like we were 10 years ago.

Life right now is all over the spectrum.  I feel like I'm in auto-pilot...but that is okay.  Going through the motions is not a bad thing...it is survival, and I'm doing what I need to do...but I feel very disorganized and slightly out of control at the same time.  I'm just trying to have faith that the auto-pilot is programmed on the right course and we aren't heading for a crash.

Falling down the stairs

Toddlers fall down the stairs...I am sure that almost every human on earth has fallen down the stairs at least once in their lifetime.

Falling down the stairs is scary.  My eldest, now 7 years old, is still falling down the stairs...and it is horrifying to watch.  He did it again today.  There are only 3 steps, cement steps, out our backdoor.  I let go of his hand to go back in the house to get something, and he fell, like a toddler...where their head seems too heavy for them to hold.

I felt terrible.  He was so sad.  He just wanted me to carry him.  I don't blame him.

It is at low points like this when the light bulb appears above your head.  Or maybe my guardian angel whispered in my ear...

We can try to help him by installing a railing!

Yes!  A railing.  Though it is only 3 steps, there is really nothing to hold on to walking down.  A railing would be perfect.

So, I called my dear brother in law this morning, who just so happens to be a carpenter.  He is going to come & check it out, and build us a railing.

Maybe this will help.  I sure hope so.  As toddlers we fall, but we all forget those early learning years.  We can all remember being 7...so I have to assume falling at 7 years old, is just as scary as falling at 37 years old.

Cheesecake

I have been looking at, moving, re-sorting, tucking into a pile with other papers, this one article from Real Simple on the world's best cheesecake.  Okay, get real self!  Do you really think you are going to make this?

After a few months of this article cluttering up my kitchen counter, I threw it out.  If I'm going to make a cheesecake, I have plenty of sources for a recipe.

Finally letting go of that one thing that has been nagging at me every day in my kitchen, has me pondering...and I came to a self-realization.

I am inundated with clutter.  Paperwork all over.  Things that need to be filed.  Things that need to be read.  Things that need...oh, forget it.

At work I'm very organized.  There are a few rules I live by to stay organized, one of them is this method I read about that goes something like this:

Never touch a piece of paper more than once.  When you get it, address it, file it, throw it away, send it on...etc...don't put it in this 'gotta get back to this' pile...it will just keep boomeranging back.

I follow this method fine at work...but not at home.

Both my sisters and my cousin have this incredible knack for not having their house cluttered with things.  Like Peter Walsh says...any horizontal space (counters, shelves, including floors) shouldn't be a holding place for things.  These three ladies have an incredible talent for not having shit all over their house.  I do not.  There is crap all over every horizontal space in my house...toys, things to be filed, pictures to be put away, toys to be put away...I can go on and on.

So, a few months ago I said I'd live with only what I need.  I don't think I need all this crap.  But the question is...how do I let go of it?  Most of my crap is paperwork.  Other people keep 'things' that they may need in the future.  I don't have a problem with that...I have a problem with paperwork.

This is something I'm going to tackle this year for my 37th birthday...training myself to let go of paperwork.  Get rid of it...stop having it pile up...stop having it nagging me to get back to it....get it out of my house.

I can picture my house at risk like a forest...when there is too much underbrush, it is at high risk for a huge fire.  That is what my house is like with paperwork...it is all over everywhere...high risk for an emergency out of control fiasco.

I will reward myself...once I get the paperwork cleared out & a system I can follow at home...I will treat myself.  Yes, to cheesecake.  Though, I don't think I will make it...I will buy it...and a good one too!

The Developmental Pediatrician

Today was the day we were met with the developmental pediatrician.  I liked her, I liked her resident and I liked the facility.  But what did we get from the meeting today?  An affirmation that what we are doing is right; we pretty much have everything covered.

Seeing the array of specialists, the therapies, and the school support; we have it exactly right & the only thing they have to add is social fun, like:  gymnastics (tried it), karate (tried it), swimming (on our radar), or pet therapy like horseback riding (looking into it).  Soccer and baseball we gave a good try at too, but again...not really his thing.  Cooking would have been good, but there wasn't enough people registered...we will try that one again too.

What we can use this developmental pediatrician for is a resource for anytime in the future we aren't sure what to do or where to go for help or guidance for school or ADHD, etc..

They agree with keeping all these specialists at one children's hospital, they gave advice on how to get a new neurologist there and prompted us to get moving on that, since we kicked the old one to the curb.

The thing this doctor did say which I haven't heard yet before was this:

That the good thing is he is hard to figure out; it is the bad cases that are easy to figure out, whether it be a clear cognitive delay, a syndrome that is more common than others, or even less common but severe.  The fact that he has a lot going for him and he is making progress, makes it hard to figure out what is the cause, but that is a good thing, it is not a bad thing.

I think I'll agree with her.

We left there without any pokes or prods, and a very happy kid.  Per the eldest's request, we ate lunch at the train station restaurant where we sat at the bar and a toy Lionel train deliver our food.  Now I'm off to start work for the remainder of the day and he is at Chuck E Cheese with his Wonderful Dad.  Then they will pick up his siblings and we can all start our weekend.

Thank Goodness Its Friday!

The promise of a picture we have never seen

When dealing with 'something,' that all these specialists 'can't put their finger on,' we have been living with the hope that one day we will be put in front of someone who has seen something just like what we are dealing with daily.  We have heard success stories of someone having something similar, and being able to say 'hey - this is the same thing!'  This is why we are never stopping putting ourselves in front of different doctors and specialists.

Starting this quest, I would have never thought, or believed, that every syndrome wouldn't be easy to identify, but it is not.  The more common syndromes (if you can even say 'common') have all these markers and characteristics...they have trends and established routines.   Some that we know publicly have huge sections in the library to help support people, parents, caregivers, teachers, etc. We aren't there...at least not yet.

The appointment with Dr. Wonderful Dentist's yesterday did not go bad.  I hardly even had to be Mrs. Assertive Advocate.  He came in the room and said 'I saw a picture at a Dallas conference that looked exactly like your son's mouth.  It was the same picture.  I couldn't believe it!'  How old was this other patient?  '5 years old.  The good news, they have figured out how to treat it with this boy to prevent or slow the losing of his teeth.'

What does this mean for us?  Referral to another specialist.  How?  Dr. Wonderful Dentist will be calling him this week, and will follow up with me by Thursday.  If I don't hear from him by Thursday, call his secretary.

Okay - we have heard that one before, and I will call on Thursday, or Friday.  But Dr. Wonderful Dentist is doing what we needed him to do...he is well connected and has lots of exposure to different dentists and patients.  This is what would possibly lead to a find of what is going on (at least for the teeth).

So...on to the next guy...eventually :)

Today: 2 doctor's appointments: Dentist...well being...and my power is out

Have I told you how lucky I am?

I know, I've told you a lot.  Well, today is a lucky day and I'm not stating that with any bit of sarcasm.  It was 7:35am and I was brushing darling daughter's hair and BAM!  A huge thunderbolt sound came from outside and all our power went out

How is it lucky to lose all my electricity?  I'm off work today.  Told you I'm lucky.  On a normal Monday, this would have been devastating since I work from home.  Not today, we have an 11:00 appointment with our pediatrician for a well being visit for my eldest, then we are heading downtown to see Dr. Wonderful Dentist for his 3 month check-in.

Today was supposed to be the meeting with the developmental pediatrician, but it was rescheduled to Friday.  So I made the most of the day and got the appointment with the standard pediatrician, just in time for the flu season, his birthday/wellness visit, and an update on his ADHD prescription.  Lucky, I am for sure!

The appointment with Dr. Wonderful Dentist should be a good one.  Good one for unleashing the power of Meg: the Mom Advocate Superior.  Dr. Dentist has still failed to write the letter regarding the genetically linked syndromes that he wants the Genius Geneticist to look at for our appointment in March.  Along with that, Dr. Wonderful Dentist has never called our pediatrician, nor the endocrinologist, as he stated he would when we met with him this summer.  You'd better believe I will be 'recapping' our appointments and his unkept promises, all nicely recorded in my notepad.

Today I will throw down my terms.  He said at our last appointment, after standing us up all summer 'You are too nice.'  Little does he know.  Today I will directly call him out if he gets interrupted from our meeting with other office business as he did to us during our last visit. I will also demand we put together a plan for the eldest's teeth.  Period.  We need to find out what we are doing about his missing 7 missing teeth, and his 2 loose ones.  The kid is starting to pop out 2 new bottom teeth, but those were initially lost 5 years ago...we can't wait for 5+ years for these others to come in, while the rest fall out.

In addition to making him address his teeth, I'm going to make him sit down & write the letter to the geneticist...while we wait.  Wonderful Husband and I both have off work this afternoon for the appointment so we have nothing but time on our side.

I will partner with Dr. Wonderful Dentist, as I try to do with all these special need resources, however, I have a limit...and if we are still nowhere with Dr. Wonderful Dentist through March when we meet with the head of Genetics at Children's Memorial, Dr. Wonderful Dentist will be kicked to the curb like our former neurologist.

Putting my own limit on things is what makes advocating possible.  An adoptive mom told me this when I was young and married without kids, and just about to embark on my quest to solve my infertility with assistive reproductive technology.  This mom's advice was to put a time limit on it all, something I feel comfortable with, because otherwise the doctors will want to keep try and keep trying things indefinitely.  I've lived by this advice every since...we will try things for x amount of time...if it doesn't work, then we change it.

Today is going to be a good day...even with the power out.

UPDATE...I started writing this blog after I got home from a nice breakfast out at Panera since I had not yet brewed my coffee.  And guess what?  The power is back on.  Just in time for me to publish this post, shower and get ready for appointment #1.

Lucky, I am!

Selling my private jet

During college I used to dream and laugh with my two best friends, about one day we would be 'the head honcho' and be so successful we would be able to take our very own private jets to visit each other for lunch.  The three of us live in Chicago, Peoria, and St. Louis, so getting together without a jet is clearly impossible.

I left my last job because I was 'a boss.'  There is a lot of reward in being a manager with training people and seeing them grow, having a lot of accountability and coming from that: direct success for a group's effort, and just making things happen with a team behind you.  But with that glory, there is a lot of work.  With a lot of work, life can get off balance...especially when you are the mom.

There were things in my last job I really loved...the people, the clients, the success in fixing something.  I had a group of 10 people, and I enjoyed them and I know they liked working with me.  Our group had the lowest attrition rate.  When I went on maternity leave with my twins, they hung signs that said "WWMD"...What Would Meg Do.  Thinking of that still makes me feel really good inside, knowing I did my job well for those folks.

As soon as I returned from maternity leave, with my managers and directors being able to see first had with my absence about what good work I did...I left.  Why?  Well...because my balance was off.  I was responsible for too much at home and at work for just one of me.

Just as all history, my work life seems to repeat itself.

To balance on this tightrope of life, I really have to be confident in not pursuing work glory, but speaking up about what I want to do, not necessarily what I can do.  I don't think a lot of people understand this, but what motivates me right now with work is being able to do the job and go home.

The last two months my life on the tightrope has looked like this:
Me in sweats (can't seem to get my act together to be dressed every morning), inching across the super high tightrope with this huge woman from work on my back...and all her baggage.

Yep - that is what has been throwing me off.  Her.  It is all her.  I've been her 'mentor' and that means...lots and lots of work.  The beginning of the year, she was on a 'performance improvement plan' - which means, you have 90 days to turn your work around otherwise you get a pink slip.  With the manager change, the new guy took her off this...though now he realizes, he shouldn't have.

She is the reason I haven't submitted a post to my blog in a month.  She is the reason my bills are piled high.  She is the reason I'm behind at work, which makes me behind at life, which makes me work late at night, which makes me...well, just behind.

Okay - I can't put all the blame on her.   I could get to my bills, my laundry, my extra work...but what would suffer?  My life.  My house.  My husband.  My kids.  So I'm letting her take a little too much of me, so what IS left, can be passed along to what else is required: my family.

Last week I had a factual conversation with my manager about all of this and my timing couldn't be more terrible.  Right now, is performance review time, which leads to bonuses, promotions, etc., etc..  I had to basically tell him that I don't want to manage people.  I can't be responsible for others like I have been with this woman, it is making my work-life balance off-kilter.  What I appreciate is being able to work, but if work affects life, life will start to affect work.  He got it.  I told him I'd throw up the flares when it gets to be too much, but I will do the job that is asked of me.  I had to be brave and truthful to myself in what I want...just a job.  Right now, I don't want a high powered career...but at the same time, I don't want to limit myself.  It stinks when you realized you can't have it all...but 'all' is self-defined, so I'm picking 'just the job' because in my life, I do feel like I have it 'all.'

For the immediate term, after 2 months of having this woman on my back while I'm inching across the tightrope, I'm finally making her inch across on her own.  She's not doing very well...I'm holding the net inches below rope, she has a harness on, and the rope is 10 inches wide and only 2 inches off the ground...with all that help she still can't seem to get across it.  Right now it is all about self-sustenance.

At this point...I've done all I can and now can get back to my life without a jet...all I want is my minivan and that satisfies me and makes me very happy.

The first "playdate" for my twin son

We have a pretty great block for our kids.  On our block, in the span of 6 houses on our side of the street has:

7 Boys: Grades: 3rd, 2nd, 1st, 4-Preschool, 2 in 3-Preschool, 2-Preschool
5 Girls: Grades: Kindergarten, 4-Preschool, 2 in 3-Preschool, 1-year old

There are some older kids too and children who live close on other blocks.  How great to have all these kids, on the same side of the street, in different grade classes, and even in different grammar schools!  I am envisioning a wonderful safe haven of different types of friends who these kids can always count on, and that won't be intermingled with the politics of the school classmate drama.

The two girls next door are our regular, and almost daily, playmates.  My twins, and even the eldest play well and often with them.  Much to the adult's joy, having playmates takes off some of the involvement from us, as it fully entertains and engages the kids.  My twin boy tolerates being the only male very well...and overall, he doesn't seem to mind.

But this weekend, we had about 2 hours of free play, so I called one of his classmates.  The boy who is his 'best friend.'  The answer was YES - he could come over to play.

This was both boy's first playdates without their brothers (friend has 2 older brothers) and the first for my twin son.  Both boys were over the moon with excitement.

The playdate was great.  They played so nice and even tolerated my eldest's injections and objections during the time.  The boys needed some prompting as to what to do, but once they got started with the action figures and the toy-bliss that is our basement, they were having a great time together and required no adult intervention.

Watching them play on the ground with their action figures reminded me of the story my mom told me about my brother.  Like my brother and his childhood friend Matt, my son and his friend sat and played action figures contently and nicely with each other.

I love that my twin son has a new best friend and we are start this new journey of playdates and having friends over.

My house is too messy for the cleaning lady?

That phenomenon that women have that makes us all clean for the cleaning lady is crazy, but it is a necessary evil.

I want our cleaning lady to mop my floors, clean my bathroom, clean my kitchen, and dust.  I don't want her spending her time picking up our toys, sorting my crap on my kitchen counters, or doing the dishes, etc.

I split my cleaning lady with my mom every two weeks, so once a month we each get her.

Last night we had a whirlwind of a day, but managed to get it all done:
4:00 - end work/school pickup
4:00 - 4:40 - homework for the eldest
4:40 - 5:40 - Physical therapy for the eldest/dinner for the twins (cheese sandwiches & grapes)
6:00 - 6:45 - Soccer practice
6:30 - 7:30 - Eldest School open house (ME only)
7:00 - 8:30 - Twins School open house (Wonderful Husband, then I'll join up)
7:00 - 8:30 - Grandma brings the kids home from soccer, gets them ready for bed
8:45 - Wonderful Husband and I home, pizza and beer in hand

When my mom was leaving my house and I looked around at the clutter and chores in every room of my house, she understood and happily accepted my request to have the cleaning lady go to her house instead of mine.   I simply did not have it in me to even pick up all the stuff and throw it into a laundry basket to get it out of the way.

Maybe in 6 weeks, when it is my turn for the cleaning lady again, I will have things straight.  Here is for HOPE!

Visting the home health store today

So much has happened in a week.  I want to reminisce about it all, the visit with my dear college friends and their families, the barbecue at my brother and his new wife's house, the first soccer game...but, what is trumping my week?  Accidents.

I feel like this blog, which started out just me venting about being a working woman and balancing life has turned into this mom focusing on everything that has to do with special needs.  I focus on the fun things, I really do...it just seems like when I'm sitting here at my desk and need a break, what is on my mind?  It used to be a running task list of all the things I need and want to do: laundry, organizing a room, dishes, shopping, etc, etc...now it is all these things that are out of my control.

Wednesday started out to be a great morning.  I dropped off the twins at school in our normal routine, and my eldest had a late start at school.  To embrace this opportunity, my dad, eldest and I went to the local breakfast joint where everyone knows our name (really, just like Cheers).  Things were going great UNTIL...

The eldest fell off the toilet and ended up with a huge 1 in gash that needed attention.  I called to the drs office and got in right away for a second opinion, which only confirmed that yes, I needed to take him to the ER.

At the ER my eldest was super brave.  We enjoyed each other's company over Disney Junior TV shows all day long while waiting for the doctors to glue and dress his wound.  Despite the circumstances, we both loved the day off from work and school.  I kept him home yesterday with me and it too was a relaxing day; while I worked, he watched TV, played on the computer, and together we went for lunch.  Even the occupational therapist was shocked to see what a good and complacent mood he was in, despite his injury...just goes to show what having a day off of work/school will do for the soul.

So here we are to Friday.  TGIF!  What a week!  I asked Wonderful Husband to take today off so I could get back to work.  He did without balking (Thank Goodness!), so he is home using 8 of his 350+ hours of available sick time and is spending the day having fun with our eldest.

10:40a - One hour countdown until Wonderful Husband leaves with the eldest to go back to the drs office for a follow-up wound check (which by the way, still looks terrible...not infected, but still bad and painful).  Would you believe me if I told you...HE FELL OFF THE TOILET AGAIN!

Wonderful husband said he was in the bathroom with him, eldest was sitting on the toilet, Wonderful Husband turned to the mirror for 1 second, turned back and our eldest was on the floor.

Seriously?! What is going on?!

Yes, he injured the same wound, hopefully only slightly...but today, I'll be visiting the home health care stores for some adaptive mechanisms to start to use around the house as soon as I can get done with work.

The only thing that is sustaining me right now and keeping me in tact and somewhat sane is the upcoming appointments with the doctors I have lined up.  Hope, again, is driving me.  Hope that in front of new people, perhaps, just maybe, we will find some answers that will lead to long term solutions.  I love adventures and excitement, but I'm getting fed up with every-day-life excitement...can't my every-day-life experiences come from a plain Jane typical day?

Discipline vs. Punishment

I read, or heard, somewhere that with children we should discipline them, not punish them.  That there is a clear difference between the two.

For the life of me, I cannot recall where I heard it;  if it was on TV, from a friend, in a magazine, or possibly church.  But I have been trying to remind myself of the difference between discipline and punishment frequently since then.

I like the difference and since I am consciously thinking about it, I decided to share it with you as my daily pause (between work meetings).

The word discipline comes from disciple.  Jesus taught his disciples, and we are to teach our children.

Two forms of the definition of discipline on dictionary.com are:

1. training to act in accordance with rules
2. activity, exercise, or a regimen that develops or improves a skill; training

So there is a difference.  When are kids are doing something wrong, incorrect, annoying, frustrating, mean, cruel (oops...am I going on in too much detail here?)...our job is to instruct them how to act through discipline.  We should teach them the proper way, not punish them.

Oh boy, it's easy to say and makes sense when you hear it...but to follow this in the heat of the moment?  I think really only Jesus is capable of this constant ability.  I know I am incapable of following this all the time, but if I keep it in my forward conscious, then perhaps I will succeed more often than not.

Now, if I could only practice some discipline in my household chores...perhaps then Wonderful Husband would have had a clean white undershirt for work today.  Thank goodness for his patience with me in my sleepy response last night 'can't you wear a black one?'.

Action on the tooth front...and tales from Michigan

Oh, I've had such a great and long weekend.  My brother got married this weekend in Michigan.  It was a goregous wedding, outside reception, and so much fun.

We had a great time, everyone looked goregous, and things went perfect.  Good food, good drinks, lots of great company from family and friends.

Oh yea - my minivan died...it wouldn't start after the rehersal dinner (10:00 at night)...we got it jumped by AAA after a failed attempt from jumping with my father's car.  Luckily, the resort we were staying at was the reception locale.  So, when the car wouldn't start when it was time to go to the church...we left it, hopped into my parent's second car they drove up, and had our minivan towed during the reception.  I went back to Michigan Monday night after the dealership replaced the battery.  My wonderful mother took the trip with me.

Thank goodness it is only an hour and a half to drive from Illinois, through Indiana, to get to Michigan, on the other side of our Great Lake.

Anyway...Friday was the best day on the eldest advocacy front EVER.

I got ANOTHER call from Dr. Wonderful Dentist's secretary.  YES!  ANOTHER CALL!  I was honestly surprised she called so soon, after she had so many questions on where we left off.

Bottom line: Dr. Wonderful wants to see the eldest every 3 months, in preparation for Dr. Genius Geneticist and to monitor the eldest's teeth.  We have an appointment for October 15 at 2:00 pm.

...

1 HOUR later on Friday, I received a call from the Developmental Pediatrician who I called during my tearful day a month back.  They reviewed our intake form, and want to setup an appointment.  GREAT!  October 15 at 10:15 am.

Have I told you how LUCKY I am?  Well, here is proof:  2 appointments, both downtown in the city, both the same day.  It will be good. We can go as a family of three to the first appointment, go out to lunch, maybe visit Lincoln Park Zoo, and head to Dr. Wonderful Dentist.  Holy Cow - this should work out great!

Two steps back with lots of tears...and never giving up, gets us one hopeful step forward.  Always having faith does get us somewhere.  At least the promise of getting somewhere is there.

Hope is what drives all things forward.

I got a call from the dentist!

Yes - they called...and they weren't returning my call.  It was Dr. Wonderful Dentist's secretary, who I really like and know she is the gatekeeper to get Dr. Wonderful moving.

Whoa...hold your horses...let's not get excited or thinking there is finally movement...not much came of the call (yet).  How often am I saying "yet?"

Here is how the call went:

Dr's Office:  Did you make the appointment with Dr. Genius Geneticist?
Me: Yes - we have it all set for March 2013 {6 months out}

Dr's Office: Is that okay with you?
Me: Well, frankly, if Dr. Wonderful would have given me his number to call 3 months ago when we first met, we would have had the appointment in December.  6 months out is just how this goes.  We know this, these specialists just take a long time to get into.  Not sure I have much control to change it.

Dr's Office: Why are you meeting with him?  What is it you are trying to find out?
Me:  {UH...REALLY?! }  We don't know.  Dr. Wonderful told me he wants me to meet with him, and he would write the letter as to the specifics of why.  So I don't know why we are meeting with him.  We need that letter {THE ONE THAT WAS SUPPOSED TO BE SENT WEEKS AGO}.

Dr's Office:  Okay.  I understand, I'll get Dr. Wonderful on that right away.
Me:  While you are at that...can you also bring to his attention, we still don't know what to do about my eldest's teeth and how they are falling out.  Are we really just sitting here & waiting for this geneticist?  Because what will happen is that we will meet with him, we will have to re-meet, re-meet and re-meet, and nothing may come of it.  We will be spending a lot of time with possibly no result, and I still don't know what I'm supposed to be doing about his teeth.

Dr's Office:  Did he lose more since the last one?
Me: Not yet, but Dr. Wonderful said 2 more are loose.  So, what am I suppose to do?  Just sit here and wait until they all fall out? Is there anything we can do? Do we look to impants or dentures like he briefly referenced at one point?  I need Dr. Wonderful to tell us what we need to do about his teeth.

Dr's Office:  I understand.  I'll make him get to it.
Me: Okay, great.  Looking forward to hearing from you soon.  Thanks for calling.

So...who wants to start throwing down bets on when and what we will hear back from them.  I'm going to sit down and figure out odds.

Weeks: 1 week, 2 weeks, 3 weeks, 4 weeks...
Requiring me to follow-up with them:  0 times, 1 time, 2 times, 3 times, 4 times...

Not sure where I want to put my money yet...but I can tell you, the big bucks won't be on 1 week or 0 times.

Back to School! Exciting & Heartbreaking

My twins will finally be 'in school' this year, not daycare.  When my eldest was younger than they, we had him in private preschools, activities, nothing but the best to get him 'the best.'

Well, with twins, and then our eldest needing all his special services, the twins really got 'daycare.'  Though I love our daycare, and it has an element of school integrated into it, the teachers are still not all 'early childhood' teachers.  You can tell by 1) their age, 2) their ability to spell (a cute penguin hand print should be 'Arctic Friend' not 'Artic Friend'), 3) just the way they are.  It may sound snobby, but it is true.

They took great care of my children and we will happily be sending them back their on breaks and probably for next summer.  They really cared about my kids and they thrived there.  The twins know how to write, know their letters, know that a shamrock is a symbol for God, Jesus, and the Holy Spirit.  It's great.

But...this school year, the kids will be going to my Alma mater.  The private grammar school next to my parents house and they couldn't be more excited.  Me either.  Wonderful Husband either.  I had such a great childhood there (even with all the teasing about having no boobs, or living next to nuns...but I regress).

They have been counting down the days for weeks, and on Wednesday I can't wait to drop them off at the door, taking their pictures, and seeing a lot of my neighbors as fellow parents.

With this excitement for the twins, also comes a lot of anxiety for me regarding my eldest.  He is excited too.  He is excited to see his friends, though I think he feels bad about having to go to a different school, because he keeps chiming in that he gets to go the same school as the twins for Religion Class.

Anyway...with the start of the school year, comes IEP, parent advocacy, reassessing if my eldest is getting what he needs, the constant questioning of what is best for him, etc. etc. etc.  It had me up last night already and we aren't even at the start of the year.

It has been such a wonderful break these last 2 months after the heart wrenching battle we went through with my eldest's last IEP planning and meetings.

I will tell you, I woke up and all day I have felt like crying from the fear and anxiety of being a special education parent.  But I can't tell if this is the lack of sleep from camping outside this weekend, from tossing and turning last night thinking about his 1st grade school year, or my depression/anxiety.

I can tell myself that I need to take it one minute at a time, and focus on how fun the first day of school will be on Wednesday for everyone.  It is a start of a new year, a fresh start, and hopefully lots of great learning and partnerships.

Update on the dentist

I am trying very hard not to be mad.  I do feel like we have wasted a lot of time and got absolutely nowhere.  However, through these advocating years, I have come to realize that sometimes when it seems like nothing is happening, things get geared up and fast in no time flat.

I called the geneticist this week to get an appointment, the one that Dr. Wonderful Dentist referred.  First problem:  he gave me his fax number.  So I had to call the office to get the phone number.

My appointment is scheduled...for MARCH 2013.

The thing that angers me is that when we met Dr. Wonderful Dentist in May, he said for us not to call Dr. Genius Geneticist, that he will lead it all.  Well, he didn't.  In July, we were to call Dr. Genius Geneticist.  Two full months wasted.  Oh well, so I would have gotten an appointment in January, compared to March.  Time flies, that is one thing I am certain of.

BUT...do you recall that letter Dr. Wonderful Dentist was supposed to write 3 weeks ago?  Well, he still hasn't written it.  Nope, not even after I called to remind them last week.  They want to first know when I got the appointment.

Okay - I know where this is going.  Nowhere.  It is just another thing I have to add on my balance beam of life to remember to get on top of them, sometime at the end of the year, to get that letter finished in preparation for my March genetics meeting.

The only way I can spin this to be good is that the eldest was in front of Dr. Wonderful Dentist when his tooth was falling out.  He took pictures, he saw what was happening.  This is the best because right now he is all gums.

Now it is just a waiting game until March, or until the next tooth falls out.  Stay tuned....where is my 'to-do' list?  I have to make sure I mark this on there.

Who is ready for a nap?

Nap Mats

I am...but I didn't make a nap mat for myself.  I did make one for the twins.  I can't believe it! I actually did it.

I haven't felt prouder of myself when I made a button hole.  It is not really a talent, just actual proof that I can follow directions.

The nap mats were pretty easy, thanks to a FREE tutorial online from Jenny Garland! http://jennygarland.typepad.com/jenny_garland/2008/09/not-your-everyd.html

Carrying Strap

Here are the pictures of the completed girl twin nap mat and the almost done boy twin one (I still have to insert the foam and put the Velcro on the side), and sew the buttons on.  I am planning to put their names on it too, but that is truly optional, so if I don't have time, no problem.

SOOO...what is going on with the rest of my life?  School?  Dentist?  Well...today I got a call from the twins' new pre-school telling me that the picnic today is relocated due to the rainy weather.  Picnic? I said.  So I didn't get the postcard, but I did get the tuition bill, so I knew they were registered okay.  I took this opportunity to ask about the nap mat to the teacher.  She said:  'Oh, yes, they are ordered.  We buy them as part of the book registration fee.'  DOH!


All rolled up & buttoned

"Who cares!" I am telling myself.  This was one SUPER FUN $400 project.  Let's just forget that I said the ending price.  I'm too expensive of a crafter, even for myself, but I have absolutely no regrets about doing this.  It was not frustrating and it was very rewarding.

Once we start school, I'll still send them with these kick-butt nap mats instead of the school distributed ones...why the heck not?

$370 later after visiting JoAnn Fabrics

The nuts lady (me), couldn't shake that itch to make those nap maps.  So, on Wednesday, I went to JoAnn Fabric and bought myself:

> A sewing machine ($190)
> Fabric & supplies for the nap mats ($180)
> A crazy shopping high

Yesterday, I setup the sewing machine and read the directions.  Remember...I really don't know how to use a sewing machine.  But, I do know how to sew by hand...I'm guessing this is going to be along the same lines of tools:  First master the manual, then you can move to the automated.

I practiced by fixing holes at the seams of two character pillow cases.  I did it! The holes are repaired and they look good - I think I have the basic automatic sewing thing down (at least one stitch).

Now, I just need to start making those nap mats.  I am thinking I will have some time this weekend...I've been finishing chores around the house so I can do my 'fun stuff' without all the guilt (or grime).

$180 is pretty much what it would have cost to buy the one I wanted online...but the kids are already excited about the skeleton pirates and rainbow cupcake patterned fabric I got.  (I didn't take them with me, even though that was 'the plan').

Homemade nap mats?

I'm this granola wannabe, or a stay-at-home-mom wannabe, or just nuts.  I will not deny, I am potentially all three.  Why if I'm walking daily on a tightrope, would I EVER want to do anything homemade?

Today I got a hair-brained idea that I would make, yes MAKE, the twins nap mats they need for school this year.  Nap mats are these all-in-one mat/sleeping bags, that roll up with a strap and are washable.  The nap mats online are not outrageously expensive, and I can afford them, however my hair-brained idea is that 'wouldn't it be fun to have them pick out their own fabric, and make it myself?'

Oh brother!  I often think of these 'wouldn't it be fun if...' and they are NOT usually not in the best interest of:
1) my time
2) my sanity
3) my pocketbook

The keyword 'my' being everyone around me, including Wonderful Husband and my kids.

This goes along the same thing that I want to be a farmer.  Why would I want to do all this?  Maybe it's idealistic, maybe it's romantic, or maybe, just maybe, it is fulfilling the crafty side of myself that is lacking in my daily grind.

What is crazy about this home-made nap-mat is:

#1: I don't have a sewing machine.   I called my sister - her's is broken.

No problem, I say!  I can buy one...it can be my early birthday present.

#2: How much time will this take?  In all reality, I don't know how to sew.  I have faked it about 4 times in my life with curtains.

No problem, I say! We need the nap mats in 3 weeks from today.  I have a 1 week break from painting class, and a break from physical therapy.  I don't want to jinx myself, but on the 18th, there is NOTHING on our calendar.

#3: Why would I WANT to do this?

It's obvious, I say!  I could be doing housework, or even fun family time, play time, or pool time?  The answer...respite.  Sometimes I need a break from adventure & challenge myself.

This is nuts...we will see how far I get when I visit the fabric store sometime soon.  'Sometime soon?' Didn't I just say I had 3 weeks to do this?  Guess I will be visiting the store sooner than later.  Even as I type this I know it is a bad idea...but why can't I stop myself?  I already told you in the first sentence 'I'm nuts.'

Vacation Bliss

Rejuvenation.  Respite.  Relaxation.  Three good words for the week that we just ended.

There is nothing like going only 60 miles from your house for a week to be unplugged, slowed down, and hang with family to give the soul exactly what it needs.  How could Michigan, or a just a cottage, give you such a difference in life that your house, even if you were on a staycation, couldn't?

I'm not going to dare try to explain or theorize that question.  It is the core reason cottages exist, especially for the Chicagoans who flock to Wisconsin, Indiana, or Michigan for that very experience.  They are all certainly on to something.

We had a great week, which is why you have heard nothing from me.  The five of us played, swam, and hung with our family and cousins.  There was nothing but swimming, sandboxes, laser tag, beaches, playgrounds, tennis, cops and robbers, beer, wine, and talk.  There were many days last week where there wasn't even a cloud in the sky.  We couldn't beat it if we tried.

I will confess I didn't think of work, the eldest's upcoming doctors appointments, school IEP, the school schedule for the twins while I was up there at all...unless of course it was after many glasses of wine and I was crying to my cousins.  Oh, drinking?  Wasn't that a new years resolution?  Yes...and I have still been stinking at keeping that one.

Next week is the last day of 'camp' at daycare for the kids.  It's a fun week too with lots of big-bang adventures planned: Navy Pier, Bowling, Chuck E Cheese, Gymnastics.  Then, a week of calm before the school storm starts.

Today everyone is still sleeping, or quietly playing, and I'm preparing for my day of shopping for school supplies, wedding attire, and a bachelorette party gift.  I feel a bit guilty in taking the day to myself to shop like this, but on the flip side, I'm looking forward to spending some more alone time before the manic Monday returns tomorrow.

While there were lots and lots of tears just a week ago, there is nothing but a huge smile, and weight off my shoulders and out of my heart today.  Life is good.  I'm blessed.  I knew this, and it is what keeps me going, but it is still nice to remind myself.

He called me back & what are the next steps again?

So, all is well that ends well.  I got a returned call from Dr. Dentist...not going to call him Dr. Oz, not going to call him Dr. Wonderful.  Right now I'm uncertain as to exactly our relationship, so I'll leave it vanilla.

What was the result of the phone call?  Well, not exactly sure.  We are still in the same state as we were 2 months ago when we first met, however, now I have the geneticist's name in my hand.  I need to call to make an appointment with this geneticist and Dr. Dentist is writing him a letter.  I will receive a copy as well, which I'm interested in reading.

Really?  2 months to get a letter together?  And now it will probably take a few months to get in front of this new geneticist.  What is so frustrating is that we could have done this two months ago, which would mean I'd have the appointment coming up any day...not sometime towards the end of the year.  Oh well...none of this actually surprises me...I've been on this road for about 5 years now, I know how long things take, and what the drill is in patient advocacy.

So, yesterday I was down, down, down.  The tears wouldn't stop falling down, down, down.  Today is surely a new day and I feel it.  I feel it from all the love and support I have all around me.  There is no way I'd be able to continue this advocacy without it.

What picked me up yesterday?  Action.  Dr. Wonderful Dentist made us all these promises, who we were going to see, how this was all going to get figured out, how he was going to take care of it and drive it.  So, I kind of put my arsenal of specialists on the back burner, waiting to see what 'glorious' people we should visit instead.

So, I called them.  I called ALL of them.  And to give you an idea of patient advocacy & how long it takes to get in front of these people, here is what I got:
1) Genetics: November appointment
2) Endocrinology: September appointment
3) Developmental Pediatrician: This one is new...so I'm getting an intake form sent to me, which the practice will review and determine which doctor I should see.  I'll get a call from their scheduler, which will probably be a few months out from there

So, with the appointment to the geneticist, I also provided them an update on the falling out teeth.  Guess what happened then?  I GOT A CALL FROM HER!  Yes...I got a call from her.  How nice is that?  Super nice, that's what!  I know this is what Dr. Dentist is envisioning, because this is what doctor/patient relationships should be.  It's just when you overextend yourself, you can't do it, and that is where I believe Dr. Dentist is at right now, but maybe doesn't realize it.

I've dusted myself off, going to meet with everyone, even if there is duplicity in some of the specialists.  And I'm taking the keys back.  Heck, I have my license...why was I waiting for this guy to drive?

Now they are avoiding us...

So, I called Dr. Wizard of Oz Dentist's office today - for the second morning in a row I got their voicemail...you know, the one that says 'we are on the other line, please leave a message and someone will get back to you.'

Yea, right.  I know they have caller id, because back on 7/2 his secretary picked up the phone without saying hello and said 'Hi Mrs...'  I don't blame these receptionists, or the secretary.  How can you look someone in the eye, or keep getting the same phone call from some desperate mom for her child with some sad syndrome that is making all his teeth fall out?

So, I left a message.  Told them the 3 questions I need answered:
1) What do I do about his teeth?  Dentures?  Implants?  Or do we just wait for all of them to fall out before we do anything?
2) What test to order for the enzyme, so I can work with his pediatrician to get it ordered.
3) Kindly provide me the names of the people you want me to see, so I can make appointments

The worst part...I totally started crying.  How could I not?  I'm crying now...this is the worst.  There was so much promise that I saw for potential answers, there is still so much of a need for something to get done, and yet again...nothing.  Nothing.  Nothing.

Are we too difficult of a case?  Are we too nice, like Dr. Oz kept telling us?

He was supposed to call on 7/18.  I hadn't heard from him.  I called Monday 7/23, Tuesday 7/24, and today, Wednesday 7/25.

Our first meeting was 5/5.  It's been almost 2 months with no progress.  How can someone not get depressed dealing with crap like this?

I know, I know, I know.  It could be worse.  Yes, it can always be worse.  But truthfully, we don't know what is going on...so how do I not know the worst is yet to come?  I think I'm justified to shed a few tears and be frustrated here...so I'm going to let myself feel it & cry a bit.

1 week later, 2 reminder calls...still no word from Dr. Wonderful

Okay - it's really really hard not to get down and frustrated at Dr. Wonderful Dentist...I'm still hoping he has some answers so I don't want to be annoyed with him, but now I'm leaning more on the side of calling him Dr. Oz, or Dr. 'The-Man-Behind-the-Curtain."

Top of the list?  Oh - remember when he told us that?  I suppose he misplaced the list.  I do it all the time with shopping lists, maybe he did that with his 'list.'

How can I turn this around to be positive?

Well, I didn't know that hospitals have attending dentists on staff.  So, maybe instead of looking for answers from Dr. Oz, I'll proceed in making appointments with other attending dentists at other hospitals.

And maybe now I should make that appointment with the Developmental Pediatrician name I've had posted next to my laptop for a year...maybe they will get me in front of the University's top endocrinology and genetics departments.  Time will tell.  But I will call again, for the third day in a row.

I feel like crying, but what is the point?  It doesn't change anything, right?

A funny way of offering help

First...no word from Dr. Wonderful Dentist.  I have my notebook with me this morning to make yet ANOTHER follow up call to his personal secretary.  Trying not to think about this too much in order to keep my low blood pressure constant.

Last night Wonderful Husband and I had his parents over for dinner.  We had not seen them for a while so it was nice to be able to catch up and casually hang out.  We had delicious south-side pizza from the joint with carpet on the walls and nice conversation over the meal with his parents.

Right when they were leaving, and it was good that Wonderful Husband pointed this out to me after they left (it is his family after all), his mom said something odd.

First, let me explain that my mother's mother would never let of her children bash their in-laws.  Good point and a good practice.  Those parents are responsible for making the spouse whom you love and adore.  So, I'm going on the record to say "I'm not bashing them.  I love them."  This is why it is so important that Wonderful Husband pointed it out.

What did she say?

"Okay kids, maybe your dad can bring you over for a visit with Grandma and Grandpa one night this week.  What days does your mom go out?"

This could be taken a few ways, don't you think?

Now, neither of us believe that his mom dislikes me.  Wonderful Husband thinks it is her way of offering to help when I'm not available.  Though, he commented that the way to help us is to take the kids off our hands for a bit so we both can have a break together.  Technically speaking, bringing the kids to her house when I'm out for the evening is actually more work for him than helping in the least.

If you just read the statement, as she said it, gosh, you could take it that she'd prefer not to have my company.  I'm not going to read into it...it was clearly a odd way to state what she did; her son and I both agree.

A call today? Oh well...painted the Monster Truck

I got a call yesterday after my second follow-up call this week from Dr. Wonderful Dentist's secretary.  She said Dr. Wonderful will call me today, or tomorrow morning.  Well, it's 2:00 tomorrow...no word (yet).  I'm not giving up - last time he called at 8:00 pm...maybe that will be the case today.  I have my dossier in hand with the questions all written down.

But anyway - I think I finished my twin boy's monster truck picture.  I have to bring it back to class and have my teacher look at it.  I probably shouldn't have outlined it all, especially the tires and flames...but I needed the practice with that super fine paintbrush to paint all my reeds and trees on my first Ireland painting.

Here are the pictures of the monster truck:

These are some nice monster trucks I found on etsy.com to order prints for a child's room.



Here is my rendition of the blue one - my twin boy's favorite color.

Still no progress, so my mind is reeling

I awoke with a start last night and couldn't go back to sleep.  My mind was reeling with all the questions I have and the anxiousness to get answers from Dr. Wonderful Dentist.  I left a message on Monday, still haven't heard back.  I called again today.

I just want to get some progress going.  I know Dr. Wonderful's intentions are great, to get everyone 'on board' and working together...but really...I've been doing this non stop for almost 6 years now, and I know, nothing gets done unless you just keep pushing it.  I want to get the names and numbers of those specialists and just make appointments already.  I'm getting disappointed because the summer is gone, and now I'll have to have my eldest miss school for all these appointments.

This is one of the things that had me up last night.  The others?  Geesh...
> Is it right for my eldest to be in a self-contained classroom?  Is that really the 'least restrictive environment'?
> How mad I am at my father-in-law for bringing his new wife's estranged sister to our small family birthday party last October...and how I am going to need to tell him that it's an exclusive invite...and not to do that again.

My father-in-law?  I'm dreaming about my son and then thinking about my father-in-law?  Well...I suppose that is the anxiety of a cookout this weekend.  Which the man changed at the last minute, totally messing up Wonderful Husband and my night out with a sleepover for the kids at his sister's house.  Instead, I get to go to a cookout with his family, half of who I love, half of who I'm genuinely afraid of...really.  So I think my subconscious was afraid that my father-in-law will start to bring these uninvited guests to our house...even if they are 'family.'  Thank goodness the half I'm afraid of are 'extended family.'  More to come...maybe...don't want to bash in-laws...Wonderful Husband does read this blog!

So, back to my eldest...I know my logical self can tell me to calm down.  That this summer wasn't wasted on missing specialist appointments...that was probably the best thing for him to take a break from all this.  That the self-contained classroom may not be bad, since he is testing at a lower age range socially.  Stop it! I'm telling myself.  Stop comparing! Will you please just live in the moment?  Stop thinking things through and trying to solve the insolvable!  Nothing is going to solve this or change it, just get through the day and have fun.

And finally, let your Wonderful Husband deal with his dad.  Right!  I'm going to ask Wonderful Husband to tell his father to make sure not to bring his scary cousins to our house this fall.  That our birthday party is small...oh yea, and don't bring your new wife's estranged sister.  It will be up to him to share that his wife is afraid she's going to rob her of the few pieces of good jewelry she owns.  And definitely don't bring the drunkard cousins...I think it is safe for me to say, we are both kind of afraid of them.

My painting - Week 4 & 5

I'm obsessed with my painting class.  I'm absolutely loving it.

I've started a painting for my youngest son, a monster truck.  It was weird going from a real life picture, to a cartoon, but it's been enjoyable.

I'm counting down the minutes from now until I can be back at class.  I'm obsessed, but is that to anyone's surprise?  Probably not.

Here is my progress on my first painting for the last two weeks.  I still have a lot I want to do, but I'm learning a lot and maybe it won't take me that much longer.  I have a lot of other things I want to get started on.

Week 4 - I started fixing some of the color on things, mostly the water.

Week 5 - worked on the building, finished the water (correcting the error on the painting by the building and the perspective of the building).  I now know how to make the color black.  Betcha didn't know you have to 'make' black by mixing colors!

One week + Two days

One week and two days...not surprised to hear NOTHING from Dr. Wonderful Dentist.

Okay - it's not really his fault, or so yet I'm not convinced.  And to give him some credit, we heard from him the day after our meeting to say he called his specialist friends.

BUT...we are in the same boat.

1) No progress on testing for the enzymes that are possibly making his teeth fall out
2) No appointments for a geneticist or the endocrinologist.  We are due for appointments, so now I'm wondering if I should just go ahead and make the appointments.

How am I not crying about this?  Seriously...I've already learned that if you want anything done, you have to do it yourself.  Teamwork is great, but unless you have a driver, the team is not getting out of the garage.

Being an advocate.  I talk about this a lot, and it's hard work to be the advocate.  Not hard work from calling, or making appointments, or putting together paperwork.  It's the hard work emotionally.  It's a bigger job than I've ever had to do before, worse than dealing with any other mean client, tough deadline, or terrible boss.

BUT...I won't let this stop me.  I will continue to push forward as we always do.  Now...time to pick up the phone and call Dr. Wonderful to remind him we have made no progress.  This time, I'll be asking for the names and numbers and test to get ordered myself.  Enough is enough.

The Taste of Chicago

I've been spoiled being able to work remotely, meaning I do not have to rush in the morning to take a commuter train into the city and trek the same route home every night.  So today, having to travel into the city center was not disappointing, in fact, it was refreshing.  While downtown, I decided it is important to have an adventure whenever possible...that was one of my new year resolutions...always do fun things.  I called my youngest sister, who is always open to celebrate Chicago and hop on adventures.  During today's lunch break, we traveled through the small vendor circus of the Taste of Chicago deciding what to eat from the large smorgasbord in front of our eyes.

The weather was perfect, a little breeze and alot of sun.  Between the two of us, we ordered and shared 4 samplers: an Irish eggroll, a potato pancake with sour cream, a pulled chicken sandwich, and a big basket of parmesan garlic french fries.  We shared a lemon flavored Italian ice as dessert.  We got autographs from 3 former Chicago White Sox players, and then ventured back to work.

What a great afternoon.  This is what summer in the city is all about.  While it is nice to work from home, it is nice to be able to harness some of what our city offers during the year-long, no-summers-off, life we corporate folk live.

We are at the top of the list?

Wonderful husband, my eldest and I had a great evening last night.  Eldest and I picked up his dad from work, ventured downtown to see Dr. Wonderful Dentist, then dined downtown.

Our evening started with an hour waiting in the reception area (very kid friendly), then a bit more waiting in the exam room before Dr. Wonderful came to see us.  The eldest impressed me so much, he was so patient...just sat there, didn't wiggle, and didn't complain.  I guess we were patient too because the hygienist told us so...and admitted she was getting impatient herself.  We were in no rush, and going downtown with grandparents babysitting the twins is awesome...we always reward our adventure with dinner out somewhere special.

So, Dr. Wonderful's report was...nothing.  He cleaned the eldest's teeth for free (because he has been so out of touch lately), and reported to us that he is going to call 3 specialists along with our pediatrician starting tomorrow to get the ball rolling.  He apologized to us for being so busy and thanked us for being so nice and patient.  And promised us we are now at the top of his list, especially that everything else is out of the way.  'He is back,' so he said.

Fast face time...no update or action to be taken yet...but nice shiny teeth.  I am not frustrated nor disappointed.  In fact, Dr. Wonderful said he was frustrated when he showed some of the colleagues at the conference the pictures, and how they were commenting on our son's plaque and hygiene.  He said...they didn't get it, it's not the plaque that is causing this.  See...he IS Dr. Wonderful.  He then commented that this time the hygiene is much better.  I responded...yea...now that the falling out tooth is gone, the root is no longer exposed so it doesn't hurt to brush his teeth.  Dr. Wonderful just smiled...he knew I was right - imagine having your full, in-tact root exposed...it hurts to even think about it.  Thank goodness we have the twins and nice smiles on both of us to prove we brush twice a day in our house and take care of our teeth.

So, after the appointment, we stopped at REI to get my son some flip flops.  Since he is older, the kid flip flops no longer have the strapped backs, so I've avoided getting them for him.  But, he has been crying how he doesn't have flip flops on and off all summer...really, for 24 hour stints at a time.  So, I caved and we got him some.  They fit him nice and he wore them out of the store.  He is funny...he even put them on the register without a prompt from me to have the clerk ring them up.


The big 'Three Little Pigs' sandwich at The Silver Palm

On to dinner.

About a year ago, Wonderful husband and I were watching Anthony Bourdain's 'No Reservations' and they profiled Chicago.  Wonderful husband recorded it and we've been wanting to try this 'Three Little Pigs' sandwich, which he said was the best ever.  The restaurant, The Silver Palm, has a passenger railroad dining car so we thought it would be fun for the eldest as well.  It was a nice time.  Like the site said, it's not necessarily kid friendly, but despite that, we had fun with our kid and since it was slow, everyone was really nice.
My eldest polished off a little bowl of sliced green tomatoes with his grilled cheese and the Three Little Pigs sandwich was great.  The dining car was cool, and my bourbon cocktail was delicious along with the shrimp and scallop po' boy sandwich.  What a great way to end our evening.  After all, aren't adventures like this what life is all about?

Our eldest cracked us up all night.  Yes, that is him with a tie on his tee shirt.  Later, he moved it to his pants and said something about 'like Sponge Bob'...I wondered what the heck he was talking about.  This morning, when I got him out of his Sponge Bob pjs...sure enough, it looks like Sponge Bob's tie is on his pants.  My eldest is a smartie...even if his first response to any question is always 'I dunno.'