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.'

Following the yellow brick road

Dr. Wonderful Dentist has 'officially' gotten back to us with some action to take.  We have an appointment with him today.

Just three days ago I spoke with his secretary and we got the face-time scheduled.  Three days lead time?  No problem...we will be there, I'll drop everything and anything to get some forward progress.  Lucky for me, my work schedule is wide open - thank you, Lord!

It has taken us 2 'short' months to get this second meeting.  Our first appointment with Dr. Wonderful was on 5/5/12.  He told us to call him weekly, if we aren't hearing him from because he'd be talking with us regularly.  He honestly told me to call him and yell if I don't hear from him, because he isn't doing his job.  So, call him regularly is exactly what I did.

It took 2 months, and 6 call backs to get where we are today: #2 appointment/face-time.  This is what it took me to get here:

1. 5/15 - no word since first meeting.  Called & spoke with Dr. Wonderful...this was when he told me about the conference he was going to, also told us about his busy schedule (and he wasn't lying).  He'd call me back around 5/29.
2. 6/5 - no word - I called him, left a message with his secretary
3. 6/7 - no call back - left a message with the receptionist
4. 6/14 - no call back - called and talked with his secretary.  Dr. Wonderful will be in later today & she'll talk with him and get back to me.
5. 6/15 - A CALL BACK!  Secretary called to ensure I'd be home tonight...Dr. Wonderful called at 8:00 pm...we caught up.  Poor guy calling on a Friday night...he is really busy, and I'm happy he is taking the time to get to us.  Talked vaguely about the conference findings...basically needing to do more testing for enzymes that may be causing my eldest's teeth to fall out prematurely.  He needs to get in touch with our pediatrician for the testing, he'll be out next week volunteering for cancer patients, then we'll get going on these tests.
6. 6/27 - no word - I called back, left a message with the receptionist for his secretary
7. 7/2 - no word - I called back again, the secretary picked up right away 'Hi Mrs...'  I told her I have these questions and how Dr. Wonderful wants to do these, but we are waiting on him:
1. We need to get the enzyme testing done, Dr. was going to work with our pediatrician but no action yet.
2. It's time for us to make follow up appointments with the geneticist & endocrinologist - should we go to who we've been seeing, or do we need to go to someone he wants us in front of?
3. It's time for a dental cleaning...should we make the appointment locally here, or does he want the eldest in his office?

...she said she'd talk to the doctor and call back...she did just an hour or two after.  And this is where we are today.

When I talked with Dr. Wonderful on 6/15, he did apologize he had so much going on.  I told him that life happens and it does, I know this.  I told him we appreciate him even taking on our case, that this is a life long situation we are dealing with, that we are just happy he is working with us.  He responded that I was really nice.  Is this a good thing, to be nice?
While I may not know if it's good to be "nice," I do know it's good to be a partner with the doctors.  This guy has the credentials and personality to get us somewhere, so of course I'm going to partner with him.  He appears to be listening and caring.  It's when the doctor doesn't partner or listen that you don't be too much of a push-over and start being a pushy advocate.

I'm just hoping that Dr. Wonderful is really who he is, and that we don't find a 'man behind the curtain' pulling all the strings and operating what appears to be 'The Wizard.'  I need my inner Toto to come with me today and look to see if I can find a curtain.