I said what?

I have an epic fear of the dentist.  I cry just making an appointment over the phone.  I was at Clarksville Dental Spa a few months ago getting my first check up since 2005 (seriously - that afraid) and all they could do to me was take x-rays because panic would set in as soon as they held up any instruments.  They SWORE they could take care of all of my issues - which were much fewer than I had anticipated, seeing as how it had been 8 years since I'd been in to a dentist - 2 cavities, a root canal with a crown, and a deep cleaning- in one sitting.  I take care of my teeth, I just hate going to the dentist.  So we scheduled an appointment for a fully sedated block of 3 hours to get it all done at once.  Sounded great to me!  Knock it all out in one shot AND I'd get to sleep through it all?  Perfect.  Except that's not what happened.

First, they called me 3 days before my appointment and told me they'd have to reschedule for a few weeks later bc the dentist had some family events to attend that day.  So, sweet, I got to dread it and have nightmares about all my teeth being yanked out of my head for an extra 2 weeks.  Then, less than 48 hours before the second scheduled appointment, they called to reschedule it again.  Tried to make it for 3:00 in the afternoon that same day.  Umm.  You can't eat or drink anything the day of sedation so there was no way that was going to work.  That's just asking for a migraine.  The next available appointment was for an entire month later.  So this place that is supposed to cater to people with dental anxiety has now tripled the amount of time I have to deal with mine leading up to the big day.  The original appointment was for the first week of May, the one they actually stuck with was June 19.  On top of that, I had to resecure a sitter for Little and Mister had to reschedule a day off work every single time they changed my appointment.  *And they make you pay up front, so you can't just get frustrated and take your business elsewhere.

So I took my 2 valium at bedtime the night before, just as prescribed.  Felt nothing.  It's supposed to help you sleep, but it didn't do jack for me.  Probably because of my years of migraine medicines.  Nothing in the weaker than a Maxalt seems to have any effect on me.  Yesterday morning I woke up feeling like a slug and pouted around the house since I couldn't have any coffee and I knew that in just 2 hours I would be in the torture chamber.  At 10:00 I took the two little football shaped pills called Triazolam, like I was supposed to.  The nurse had told me they had a Xanax like effect to them.  I've never taken Xanax, so that didn't mean anything to me.  We hopped in the car and started to take Little to a babysitter so that Mister could stay with me at the dentist.  At 10:15, Mister recognized a city code enforcer parked in the neighborhood, so he stopped and rolled down the window to chat with her for a minute.  That's when I realized these little blue pills were no joke.  Definitely stronger than a Maxalt.  When he rolled the window back up I told him to swear not to let me talk to anyone until this was over, hide my phone from me, and why were the trees moving like that?  That's the last thing I remember.

According to my husband, I was in and out of consciousness from that point on and when I was up, I was up and when I was down, I was o.u.t.  Here are some of the highlights of the day, as reported to me by my husband.

Things I did or said on the car ride there:

~ Hey don't let me talk to Whitney.  Promise you won't let her come out to the car.  Roll up the windows RIGHTNOW so that she can't come out and see me, I cannot talk to anyone like this!

~Hide my phone.  I really don't need to talk to anyone like this.  Really.  Take my phone and don't give it back to me no matter what.

~Ooh, my phone!  I'm gonna call my mom!  (into her voicemail)  HEEEEEEEEEEEEEEEEEEEEEEEEY MOOOOOOOOOOOOOOOM!!!!  I'm on so many drugs!!!!! click.  There, that oughta confuse her ALL day!!!! HAHAHAHAHAHAHA  Let's call Gran!  I'm gonna call Gran!  (Gran picks up)  HEEEEEEEEEEEEEEY GRAAAAAAAAAAAAAAAN!!!  I'm on so many drugs!!!!!!!!  Wharrtre you doing?  Druuuuuugs!  That's what I'm doing!  Why are the trees moving like that?  I'm on drugs!  Weeeeeeeeeeeeeeeeeeeee!   ***pull into Whitney's house to drop off Andrew*** Sam, don't let Whitney come out and talk to me!  I'm on too many drugs.  HI GRAN!  Don't forget Andrew!  No, I'm talking to Sam - Gran!  Hey!!! DRUUUUUUGS!

~pass out. pop awake. pass out. pop awake.

~dance to the radio and tell Husband that we should go to the club so I can go dancing

~pass out

~Where's the kid?!?!?!  Is he at Whitney's?  Did we forget?  Don't let her talk to me.

Things I did or said at the Dental Spa before the appointment even started:

~I can't get out of the car.  Stop helping me!  I can do it.  I can't move my legs. 

~ **standing in the parking lot**  Can we just stand here for a minute?  My legs feel heavy.  **3 minutes later, Mister gives up and drags me inside.

~ Ask Mister to sign me in at the front desk about 16 times

~My mom calls back and I HAVE to answer it.  Don't know what I said, but I know was loud.

~I HAVE TO PEE!  Tried to take Mister outside to the bathroom down the hall but was redirected to the one inside the clinic by a nurse.  Hey,  a bathroom!  I have to pee!  You have to help me!  **Start to take down pants while door is wide open.  Sam saves the day.

~ **Aid comes to get me and I am still wearing my sunglasses.  Tries to take them off and I throw a fit.  I'm going to need those back!  You can't have them.  I need those when we are finished.  **gives them to Husband.  I'm going to need those back (angry glare at the receptionist who had nothing to do with it).

~ Yeah, that'll work!  **At the numbers on the scale they weighed me on in the back room.  Mister said I was pretty happy with my weight.

Things the Dentist and assistants told my husband I did or said during the appointment:

~Nurse to Husband:  What church do ya'll go to?
  Husband:  Barker's Mill........
  Nurse:  Oh, okay.
  Husband:  Why?
  Nurse:  Well, she wouldn't let us do any work on her until we all prayed together first. 
  Husband:  That sounds about right.
**YEAAAH!!!!!!!  Good job, Katherine!  Look at me, remembering whose in charge even when I'm medically and legally roofied!
 

~Dentist to Husband:  What happened to her???
  Husband:  What do you mean?
  Dentist:  I mean, why is she so anxious?  Did something happen when she was a child?
  Husband:  I'm not sure.  I know she's been dreading this for months and she REALLY hates going to the dentist.
  Dentist:  Yeah, I could see that.  Well we can't finish.  She's a little girl and we've given her more medicine that we've ever given anyone ever before.  All we got done was the cleaning and part of the root canal.  She'll have to come back atleast 2 more times to finish that and the 4 cavities. ***4??????  There are 4 now????***

Dentist:  We asked her if she was ok with coming back and changing her sedation method. She said ok but she's all drugged up.
Husband:  No kidding.

~Nurse:  Next time I think we'll have to try doubling the dose of pills and using gas instead of sedation. 
**WHAAAT?**

~Nurse:  Ok, she's ready to go now.  You'll have to pull your car around back.  There's no way she's walking out here.
  Husband:  Oh man.  Are we going to have to stretcher her out?
  Nurse:  We managed to get her in  a wheelchair.  I'm not sure how long we'll be able to keep her there.
 Husband runs to the car.

~ Where are my glasses?  What did the dentist say?  Where's the kid?  Don't let me talk to Whitney.

~Nurse to Husband:  So some of the draw down effects of these drugs are sleepiness and confusion.  You need to stay with her all day.  As in don't just put her to bed then take off somewhere - you need to actually be right there with her.
Husband:  Ok, that's fine.
Nurse:  And most of the time, the patient has lots of tears and crying as the drugs wear off.
Me: **waves hand in a dismissive manner**  Psshhhhhhhhhh. he's got that one down with me!  Laughs histerically as I flop about in my wheelchair.

~Husband tries to get me in the car and I inform him that I can't remember how to get my leg inside the door.

Things I did or said on the way home:

~ pass out

~pop wide awake  What'd the dentist say?

~pass out

~pop wide awake, look in the backseat and scream "Where's the kid?!?!?!?!"  Tells me he's at Whitney's and we are going to get him right now and I say.....Yep, you guessed it "Don't let her come talk to me.  Promise?  I don't wanna talk to anyone.  I'm on drugs.  What did the dentist say?  Did they get it all done?"

~pass out

~Pop awake and see Little in his car seat behind me.  Where that kid come from?!  What did the dentist say?

~pass out

At home:

~pass out on the couch for a few hours, much to my husband's relief

~wake up groggy, but not quite as incoherent.  Where's the kid? What'd the dentist say?

~Burst into tears at the thought of having to go back a few more times to finish up what was supposed to have all been done in one visit.  *But I only cried one more time!  So take THAT nurse who said I would be a big baby all day*

~When is my face supposed to feel normal?
  Mister:  In about 2 hours
  Me:  Oh.  wait - 2 hours from now or from when they numbed me?
  Mister:  When they numbed you.
  Me:  Umm, it's after 5:00.  I've been numb for like 6 hours.  What did the dentist say?
*ended up not wearing off until sometime over night.  I think I was numb for about 15 hours.  I totally believe them that they gave me more drugs than any other patient ever.

~ *As my head got clearer*  Me:  What did the dentist say?  Did they get it all done?
  Mister:  deadpans "NO.  I told you, you have to go back bc they couldn't finish."
Me:  WHAT?!?!  Why not?  OMG I have to go back????!
Mister:  What do you want me to say?  I don't know why they didn't finish!  I don't have all the answers.
**Mister clearly had lost his sense of humor and patience with me at this point and didn't care to hide it from me**
Mister:  I'm taking the kid and going outside for a while.
Me:  bursts into tears for the second time "Why are you being so mean?"
Mister:  Because I've already answered that for you like 20 times.  You keep asking me the same thing over and over again.
Me:  I can't help it!!!  I'm not doing it on purpose, I've been on drugs!  How do you not understand it?  You WORK on a drug task force!
Mister:  flees for the safety of the outdoors but later apologizes

-------------------------------------------------------------------------------------------------------------------

So there you have it.  The more entertaining parts of the day, that he's remembered to tell me so far.  I cannot believe I have to go back again and that they found 2 additional cavities.  My entire face is going to be numb that day.  I am really just so disappointed that a place that claims to cater to people with my phobia and guarantees that they will make you perfectly comfortable and can handle it all - couldn't seem to get a grip on how to fix ANY of my teeth.  NONE.  All they did was clean them.  Didn't fill a single cavity.   AAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAGH I HATE THE DENTIST!  Thank you SO much, very first dental assistant when I was a tot who backed me into a corner and pointed the explorer (the worst tool ever - it's the one shaped like a hook) at me and yelled at me to get in the chair or else she was calling over the dentist - and you don't want him in here, believe me!  And thank you, Chandra, the clumsiest person to ever change rubber bands and brackets on someone with braces.  Never left that place without busted gums, a slit bottom lip, or shredded cheeks - every month for FOUR years and a month. 

There is NO WAY I'm allowing them to finish my root canal without IV sedation.  I've been awake for one before and it was the worst experience I've ever had at the dentist.  So add that to the 2 examples above of why I am absolutely petrified of the dentist.  Plus, the crazy patchwork job they did on that tooth left me with a big grey smudge on the front of the tooth!  A FREAKING GREY TOOTH.  So now I have to walk around looking like a meth mouth until this root canal gets finished - which with their track record of postponing appointments could be next February.

So, if you'll excuse me know, I think I ought to call my mom and Gran and make sure I didn't say anything worse than "I'm on druuuuuuuuuuuuuuuuuuuuuuuuuuugs!"  Oh, and Whitney - thank you for watching Andrew, even though I apparently wanted to hide from you.

I Can do it Myself

There is a time in a toddler's life when he or she decides for themselves that are ready to be a "big kid".  They start trying to figure out the mechanics of pulling their shoes off of their feet and pulling the lids off of their sippy cups so they can flood the kitchen, I mean fill their own cup up at the refrigerator door.  They start screeching "No, Mama!  I do it myself!" multiple times a day while simultaneously shredding the tissue and swatting away your arm that was outstretched to wipe that runny nose.  According to What to Expect: the Toddler Years (oh yes, the book series stretches out beyond just pregnancy), this phase usually sets in around the 29 month age (so, 2 years and 5 months for the mathematically challenged).  This is around the same time that tykes start feeling confident and capable in their own abilities to do the things you have always done for them.  In fact, they feel overconfident - I'd say more like superheroes; brave and full of pride.  They do things like scaling the countertop to get their own bowl for cereal and run into the living room with the butcher knife because that banana you usually slice for them each morning?  Well they "doo'd it demselfs". 

Not my son.  In one of his evaluations last December, a PT told me he was "very aware of his own limitations" and that he was protective of himself in the way of refusing to perform tasks that could potentially harm him.  *He was refusing to climb (crawl) down a set of therapy steps at the time.  She called it self-preservation.  This was not a dig at my overprotectiveness or meant in any kind of negative way whatsoever.  In fact, she sounded kind of impressed at how self aware he was and she told me it was great that he had developed that sense about himself so early on.  I know it doesn't sound like such a desirable trait for a toddler, but when a broken leg could send you to a wheelchair by the age of 6 instead of 12 - then trust me, it is. 

Little's "help me do it" attitude has not just been in the aide of physical feats, like climbing stairs or jumping on the couch, but it in all aspects of his life.  He has been perfectly content having me and Mister do even the simplest tasks that are considered self-help.  I could encourage him, full on cheerleader style to go pull his own wet wipe out of canister himself so we can clean up the spilled oatmeal, but all I would get back is "I can't!  Not by myself!"  No sense of Hmmmmm,-maybe-this-is-something-I-should-try-for-myself seemed to be in there at all. 

Do you want to brush your teeth?  No, Mommy do it.
Can you try to pull your socks off?  No, it's too hard!
Now you try to pull your pants up.  No!  Youuuuuuuuu!
Do you want to check the mail with me?  Yes!  Ok, come on.  No!  Hold me, Daddy!!!

I know some of you are thinking "Well she just does too much for him.  She should just make him do things himself."  Well I'm betting those of you thinking that don't have a child with a muscle disorder. Yes, I do a lot for him.  Yes, I am keenly aware of the things he cannot or should not do for himself due to the dangers.  So I do step in where I need to.  But I *don't* just autopilot everything for him.  I try and try and encourage and use that stupid singsongy voice while grinning ear to ear and chanting "You can do it!  Just try!" 3000 times a day.  I try to get him to do everything from undoing the Velcro on his monster shoes to singing "Brushabrushabrusha" from Grease while handing him his toothbrush to squealing and clapping like a lunatic every time he shows initiative.  Do you seriously think I want to have to get up and do every little thing he needs for him?  Do you think I don't want to just sit on the couch and breathe for 5 minutes uninterrupted by neediness?  Do you have any idea how long it has taken me to type this much of this blog post out?  I've been up about 14 times already.  I try.  So hard.   He just doesn't care.  Or lacks confidence.  Or is lazy.  Heck if I know.

I began feeling like I was just always going to have to do everything for him.  I know that the time will come when his arms no longer work and so I will have to begin dressing him again as a teenager, but I used to think that somewhere between now and then, Andrew would dress himself.  Well we've had weekly OT* since he was about 15 months old and Little still seems to have no desire or idea how to put on his own shirt.  Left arm through the neck hole?  Sure, that seems right.  It sure would be easier than sticking it through that other smaller one.  Wait, I'm stuck.  And it's dark.  MOMMY HEEEEELP!!!!  You do it!!!!   *Not blaming his OT.  She is wonderful and kind and cares so much about Little.  She has practically transformed his little hands from curled up, crunched in closed fists to a hand that can grasp a crayon and hold a spoon and finger paint.

As with most all of Little's milestones, I've been waiting a looooooooong time for this one.  Andrew is not 29 months, he is 39 months (again, that's 3 years and 3 months).  So 10 months past what is considered "average" for that phase to start.  Now, before you all get hung up on the use of the word "average", please notice that I did place it in quotations, but I have to use some adjective that describes the way a child without any sort of special needs typically is expected to develop.  And besides, Andrew is not average.  Duchenne does not occur in your "average" child.  So yes, the word is appropriate.  I also could have used normal, typical, regular, usual, etc but those all seemed worse to me.  So average it is.  Back to the point here, which is that my child has never been a "me do it" toddler.

Until now.  Halleluyer, my son has started saying, "I can do it by myself!" for the past 2 weeks.  All of the sudden, one day he just decided that he doesn't need me to carry him up the 2 steps from our garage to the inside of our house, he can crawl up them and get in himself.  He doesn't need me to get him a spoon out of the drawer for his cereal, he can pull the drawer open and dig one out himself while I am pouring the milk.  He has decided that he doesn't need Daddy to carry him out to the mailbox, he can walk there himself and pull open the hatch.  He doesn't need me to loosen the Velcro on his monster shoes before pulling them off, he can do it himself (the Velcro, not the pulling off part - but we'll get there).  <-- actually="" already="" and="" ask="" back="" be="" believe="" by="" clothes="" come="" day="" dressed="" get="" go="" he="" him="" his="" i="" let="" ll="" might="" myself="" nbsp="" one="" out="" p="" pick="" room="" starting="" that="" the="" time="" to="" when="" will="">
He has been trying to do so much this week.  He is still so aware of his limitations, though.  Like earlier today, he wanted a mini bag of Fritos for a snack, so he went to the pantry and got them himself.  Then he brought them to me and asked me to open them.  Didn't even try to do it himself, as he knows he lacks the strength and dexterity to grasp the two different sides of the bag and pull it apart.  Many times in these last 2 weeks, I have heard him say "I can do it!" then pause as his mind wraps around the mechanics necessary to accomplish whatever it was and then ask me "Can you help?"  And yes, this new sense of freedom and bravery and confidence he has means more and bigger messes in the house.  Like the flooded kitchen floor referenced in the first paragraph...  But these are messes that I am lucky to be able to clean up (now with his help).

I don't know if it's preschool and being around so many other children who can physically do so much more than he can or just that the particular switch in his brain that signals the "I can do it" attitude to kick in has finally activated, but I am so thankful.  This is a stage that is so easy to take for granted or get annoyed with because doing it themselves means it takes 7xs longer, but I welcome it with open arms.  This seems to be a recurring theme in the Palmer house...crawling, making messes, having to babyproof...life with a special needs child is so challenging yet rewarding in ways life with an "average" developing child is not.  I believe that my sense of gratitude is much more sensitive/heightened than most people's.  Every milestone that he hits is a true gift.  Ok, I lied.  I am not thrilled at all with the WHY? that follows every. single. thing. I say to him.  But then again, speech has never been an issue.  So I guess I just reinforced my point.

Speaking of preschool - here is how much he loves it:


 

Muscle Walks and a Talent Show

So our 2013 winter/spring season of fundraising has finally come to a close.  In early March, we had our annual MDA Muscle Walk in Arkansas.  We raised $2630!!!!!!!  WAY past our goal of $1500!  I just can't thank you guys enough for all the donations!  Little's League totally came through this year.



We shrunk in size a bit this year, but it sure didn't slow down our spirit!  Check out Little's sweet ride during the Victory Lap!








That's my dad, for those of you wondering.

Our youngest team member turned 2 that day, so we celebrated with cupcakes.







Little Boy's always in the spotlight.  He knows exactly what he's supposed to do in front of that banner.



The MDA crew

And because.......well......putting Andrew on a horse is never not hilarious.

My mom couldn't take it and swooped in to rescue him.

Next up, we had Music City Muscle Walk (Nashville).  We couldn't actually attend since it was the same day as Little Rock's, so I worked with the chapter there and found a way to keep our team registered but donate late.  For that, the incredible students at Montgomery Central High School in Cunningham, TN devoted their annual Talent Show for charity to Andrew and Duchenne - for the second year in a row!  These teens are so amazing!!!!!!!  They can pick any charity they want, so for them to pick MDA again just blew my mind.  Thanks to these students, we got to send $800 to MDA Nashville!  That's the exact amount of money it takes to send one child to MDA's summer camp.  So the money will either sponsor a child with DMD for summer camp, or go to DMD research.

Here are some highlights from this year's crop of talent:

Jack Roney

Haleigh Smith



And the winner, Madelyn Pulley



 Little and his girlfriend, Littler (who is actually older than he is!) getting cozy to watch the show.

Our "check" for $800 - which all came from donations at the door.

All of the participants and the student directors and emcees with Andrew and his big check.

Thank you again to Bailey McMahan, Lauren Ritter, Maggie & Scott Davis, and the MCHS NHS for putting this on and letting us be a part of it.  We were truly honored.

So that makes a total of $3430.00 that Little's League raised for MDA this time!!!!!!!!!!!

Our Little's Leaguer of the week:  Wayne Pinckley!  Wayne is a member of our church, Barker's Mill Church of Christ, adores Andrew, and has been known to make me cry like a fool a time or two.  :)  This photo is from an old timey play date our tots had at church a few weeks ago.  I don't think you can usually find him on an itty bitty trike, but then again.......I don't really know what he does in his spare time.  ;p