Fall 2012

Fall 2012
[learning to live a perfectly imperfect life]

Leavin' On a Jet Plane


Okay, so did that make you think of the movie Armageddon?  All I can think of is the scene where the tough guys all start singing that song... or maybe that was the scene with Ben Affleck and Liv Tyler.  So obviously I haven't seen it in awhile, but man I loved that movie.

Anyway, I am.  I'm leavin'.  On a jet plane.  Well, maybe it won't be a jet plane.  What is a jet plane anyway?  Just a regular plane?  A faster plane?  

Tomorrow I am flying to Sacramento, California for the 37th Annual National Down Syndrome Congress Convention.  And I am pumped.  (Do kids use the word "pumped" anymore or did I totally age myself?)

My first convention was in 2006 in Atlanta, GA.  Talk about meeting amazing people, listening to incredible speakers, and feeling an overwhelming sense of family & community.  

It was there that I met this guy...


Does he look familiar?  Well, if you were a fan of Life Goes On, a TV series that ran from 1989 to 1993 (don't think I have that great a memory... I just use "Google" to make it look that way) you will know him!  This is Chris Burke, who played a character named Corky.

I left that convention vowing to never miss one.  

In 2007, the convention was in Kansas City, so Jeremy, Jordyn and I all attended.  What's so great about the convention is that they have 3 simultaneous conventions going on... one for adults/parents/grandparents/professionals/etc., one for siblings of individuals with DS (starting at 6th grade) and one for self-advocates... individuals with DS (starting at age 15.)  Jeremy was equally as impressed as I was with the convention, and we had a great time! (Please excuse the lousy picture taken by a less-than-wonderful point-and-shoot camera!)


Jordyn loved meeting new friends, and still keeps in touch with one of them (through text-messaging and Facebook!)


We all left there, vowing to never miss another convention.

In 2008, we broke our vow.  The convention was in Boston, and we just didn't make it.

Now, it's 2009 and I'm headed to Sacramento.  Jeremy and Jordyn are bummed they aren't going, and though it would be another fabulous time with them, I can't lie.  I'm looking forward to some "me" time!  I am rooming with a friend I meet in Atlanta and have kept in touch with ever since.  She has a daughter who is very close in age to Rylee, so I'm sure we're going to be up late swapping stories about our girls!

I know I will miss the kids immensely -- thanks to my mom, who will be staying with the kids when Jeremy's at work, I can leave knowing they are in great care. When Grandma Cindy walks in the door, Rylee will immediately say, "Bye Mom" and ask Grandma to "go eat." (Grandma apparently is a much better pretend-restaurant-eater than I am.)  Carter might fuss a little, but he will quickly be off doing something fun with "Grah-pa Cin-ee" (yes, he calls her 'Grandpa Cindy'... thank goodness Mom thinks it's adorable and isn't even remotely offended!)

And as for Jeremy... he's good at picking up the slack when I'm gone   though they may not be bathed for 4 days.   

So, there you have it -- leavin' on a jet plane.  Or whatever kind of plane it is.

Wordless Wednesday





A Letter From Rylee (People-First Language)


I began writing "Letters from Rylee" last year when I realized that Rylee had a lot to teach the world. (Actually, I knew Rylee had a lot to teach the world the minute she was born, but "Begin Writing 'Letters from Rylee' So She Can Teach the World" didn't make it to the top of my to-do list until last year.)

I just finished writing my 3rd "Letter from Rylee," but before I share it, I want to jump back and share the 1st two letters for those of you who haven't read them.

Here's the first letter -- take it away, Rylee!


*****



Happy World Down Syndrome Day!

March 21, 2008

Down Syndrome International has declared March 21 as

World Down Syndrome Day!

(Because people with Down syndrome have 3 – 21st chromosomes,

it was appropriate that the date “3-21” was chosen!)

I was excited to hear about this day, because it gives me a chance to tell you some important things about me.


My name is Rylee.

I am 4 years old. I go to pre-school to learn things like sharing, counting, ABCs, and writing my name.

I like eating spaghetti and cheese.

I do not like having my hair cut or brushing my teeth.

I am happy when I get to read books with mom, play ball with dad and dance with my older sister.

I am sad when I have to leave the toy store.

I get mad when my little brother gets into my things.

Do I sound like other kids you know?

And, there is something else that makes me, me

I have Down syndrome.


I don’t really know what Down syndrome is yet. What I do know is that I am more like other kids than I am different.

I am a person first.

When people talk about me, I want them to say my name first.

I am not a "Downs kid."

Because Down syndrome is only one little thing about me,

I don’t want it to be before my name.

It makes it sound too important.

I know that other people with disabilities want the same thing.

Mom says it’s called “People-First Language.”

I just think it’s nice manners.

If someone you know has autism,

they are a "person with autism"– not “an autistic person.”

If someone is disabled,

they are a "person with a disability"– not "a disabled person."

It may not seem like a big deal to you, but it is to us –

and to our families.

Mom & dad say that our words are very powerful.

What and how we say things shows others what we believe.

I hope that you believe what I do… that I am Rylee.

I am a little girl.

I like going to school and playing with my brother and sister.

I just happen to have Down syndrome.

The next time you talk about someone with a disability,

please say their name first.

It will show that person that you believe just that –

that they are a person first!

Thank you, Rylee!


*****


If you would like to pass Rylee's letter along, please email me

and I can email you her letter as a pdf document.

Thanks for helping to raise awareness!

© 2008 Carin Griffith • Disability Awareness Alliance™


Have You?


Have you ever been outside, just before supper, when the day is cooling off?  Have you waited for your husband to come home from work while watching your kids ride bikes in the driveway?  Have you ever watched them play, feeling incredibly lucky to have them?

I have.

Have you ever taken a minute to grab the garden hose and water some new spots of grass you've planted on your lawn?  While watering, have you looked around casually, glancing at the neighbor's new bushes or watching the neighbor kids play in their yard?  

I have.

Have you ever turned back toward your own driveway, only to find that your own two children are no longer riding their bikes?  Have you literally felt your heart stop for a minute, and called out their names?

I have.

Have you dropped the hose, and began walking quickly around the area to find them?  Have you continued to call out their names, sounding more frantic with each call?

I have.

Have you ever visualized the dreaded newspaper headlines in your head: Irresponsible Mom Loses Children While Watering Grass? 

I have.

Have you continued your search, calling their names louder and louder, now running into the house, searching every room?  Have you played out the dreaded phone call to your husband in your head?

I have.

Have you suddenly flashed on the fact that your children recently have a desire to play in your vehicle, unbuckled, wandering from seat to seat, trying on each seatbelt?  Have you remembered that though you are now taking the keys out of your car parked in the garage due to this recent desire, you forgot to lock the vehicle's doors after returning home from the store?

I have.

Have you quickly run to your vehicle and thrown open the door, relieved to immediately hear your children's voices?

I have.

Have you found your children, each with pink sparkly lipgloss smeared from chin to nose and out to each cheekbone, holding the sticks of lipgloss you keep in the center compartment of your vehicle?

I have.

Life with An Extra Chromosome (Partners in Policymaking)


I climbed into the van, taking a seat next to Kelly, a young woman with Down syndrome. As I situated myself for the ride, Kelly did the same... popping in her favorite CD, throwing on her headphones and cracking open a can of Diet Cherry Coke.

My life was changed.

*****

I was sitting in a room, surrounded by people I had met only moments before, listening to a woman named Kathie Snow talk about "People-First Language."

My life was changed.

*****

In 1987, Minnesota Governor's Council on Developmental Disabilities created a ground-breaking, innovative training program called Partners in Policymaking to teach parents and self-advocates the power of advocacy to change the way people with disabilities are supported, viewed, taught, live and work. Since then, this program has spread nationally and internationally.

I was fortunate enough to be a part of South Dakota's Partners in Policymaking Class Year 15. For 1 weekend each month, from November 2006 through April 2007, I traveled (okay... I bounced along the interstate with Carter in my belly) with several others to Pierre, our state capitol (about 3 hours away) to attend this training.

I can't make a list right now of the things that I learned. Instead, what I learned is sprinkled throughout my life from now on. What I learned comes through in my thinking... in my writing... in my actions.

My teachers? The individuals I rode with to Pierre. The other parents in the class. The individuals in our class who had disabilities themselves. The speakers we had during our sessions. And myself.

I know there are other states with programs like this... South Dakota is now taking applications for Year 18, and if you want to be a part of it, visit South Dakota Advocacy.

My life was changed. It really was.

The Road to Rylee's Tonsillectomy - Part 4

Results of Sleep Study: Sleep Apnea, Low Oxygen Saturation During Sleep
Doctor's Recommendation: Tonsillectomy, Possible Repeat Adnoidectomy

So we got the results of the sleep study.  They were bad. Which was good.  I mean, it was good that we now had some concrete medical proof that Rylee was experiencing sleep apnea, which would explain her changes in behavior. The fact that Jeremy and I began actually hearing Rylee stop breathing periodically in her sleep wasn't concrete enough.   

(Just a few results from her study: Rylee experienced nearly 13 episodes of apnea within 1 hour of sleep... doctors want to see that number below 4.  Her oxygen saturation dropped to the low 80's at times... doctors want that above 94.)

So, back to the operating room we went.  This time, big sister Jordyn came along to encourage, support, and give hugs when necessary.




"Hey doctor... my sister Jordyn has an owie on her hand.  See?  Maybe instead of you taking out my tonsils, you can just fix her owie and we'll call it a day."



Rylee did well just before surgery... she performed medical exams on nearly everyone she could get her hands on... her baby, Dad, Mom, Jordyn, the nurse, the doctor, the anesthesiologist, the patient next door... and down the hall... and...



Just like the 1st surgery you know, the one in which we should have insisted on them taking out her tonsils but didn't and no I'm not feeling any parental guilt  I dressed up in scrubs to take her back to the OR.  This photo was pre-hairnet wearing... a photo of me wearing a hairnet really isn't necessary.



The nurse brought Rylee some Versed again... just to take the edge off.  As you can see in her eyes, she's feeling a   l-i-t-t-l-e   b-i-t   d-r-o-w-s-y   in this photo.


Operating Room... same story as before... took her back, put her on the operating table, gave her words of encouragement and lots of hugs, walked away, shed some tears... you know, the norm.

Surgery went well, and tonsils were out quickly.  (Adnoids hadn't grown back, so that was good.) We went back to see Rylee in recovery, and she was less than thrilled.  We were happy to see that she already had a popsicle in her hand.  While in the recovery room, she had about 3 popsicles... and by "about 3" I mean that as soon as she had eaten enough of the popsicle that it fell off the stick, she was mad.  I mean mad.  So, we quickly got her another one, swapped the new one with the almost-gone-but-falling-off-the-stick one, and life was okay again.  For a little bit.  



After some time in the recovery room, we headed over to the Pediatric Unit in the Children's Hospital.  Rylee got to ride on Jordyn's lap in the wheelchair.



Once settled in the hospital, Rylee continued her popsicle intake.  She was still not very happy about life, but managed to be content with a movie and a cherry popsicle which she didn't eat very quickly so it dribbled all over everywhere, making her hospital gown & bed look somewhat like a murder scene.




After a long nap, Rylee was a little bit more cheery.  (Well, she was cheery as long as no one messed with her... she wasn't a fan of the periodic blood pressure readings, temperature checks, and oxygen saturation readings.)  She asked for chicken and french fries.  I chuckled and said, "Oh honey... no, no... what about a strawberry smoothie or something soft?"  The nurse said that, really, she could have whatever sounded good to her, and that I would be surprised at what kids eat following a tonsillectomy.

Now, I, having gone through a tonsillectomy in my mid-20's, nearly wanted to throw up at the idea of eating chicken and french fries just hours after surgery.  But, then again, I also had an absolutely miserable time recovering.  Just ask my mom, who had to come help take care of Rylee, who was just a few years old, and me afterward.  (It took me a good month to recover.)  I think I was even near death several times. Okay, so maybe not.  But honestly, it was awful.

So back to chicken.  We went ahead and ordered chicken and french fries.  And darn it, if that girl didn't eat nearly the whole plate.  (Well, not the plate, but you know what I mean.)


She wanted to eat lying like this.  Sort of on her tummy.  Sort of on her side.  Sort of falling off the bed.  I tried several times to sit her upright, but she got mad.  So, I decided it wasn't a battle worth fighting.  Let her do what she wanted, right?   Besides, if she chokes on a chicken strip from not eating upright, someone around here is sure to know the Heimlich.  

And see that Strawberry Smoothie I was certain she would want?  Nope.  She ate her chicken and french fries.   I drank her smoothie after she fell asleep.



It was a long night -- as I posted about before, during the whole ordeal, she woke up quite a bit, wanting fresh ice in her water.  The ice I'd gotten her 20 minutes before wasn't going to make her feel better.  Also, every 4 hours comes really often to a parent who has to force her child to take pain medicine.  But I'm not going to elaborate on that... I'm still suffering from post-traumatic stress disorder.

In the morning, she was doing well enough that discharge papers were being written up.  We just needed to keep up with her pain meds at home, and be sure she continued to eat and drink well. After she finished her breakfast of eggs, toast, bacon, and chocolate pudding (remember I said I was picking my battles?) we were outta there.  


And not a minute too soon.  Up until this point, Rylee hadn't been out of her hospital room.  After breakfast, she discovered the door, and realized that there were other rooms with other patients... patients in which she was certain wanted her to barge into their rooms and visit.  And have her play Dr. Rylee and check their blood pressure.  And have her change the channel on their TV.

So, we had to drag her outta there.  Home sweet home.

*****

I already posted about her recovery at home... had a few up days and a few down days, took medicine miserably, but all in all recovered well.  Today, she seems to be doing just fine... no lingering signs of surgery.

I do know that she's one tough cookie.  She puts up with a lot of medical crud... she may be upset at the time, (okay, she IS upset at the time) but that girl can bounce back and whip out a smile just like that.  She holds no grudges and wins the hearts of everyone involved in her care. I admire her.

Have we noticed any changes in her sleep?  Well, I know she hasn't verbalized being tired as much as before, but I do still hear her snoring.  How will we know the surgery was successful?  What doctor?  Did you just say another *gasp*.... sleep study?  Oh gosh... I just can't go there in my mind right now.

This week, she visits her ENT for a follow-up from surgery.  We'll see what he says.  If another sleep study is brought up, I don't know what I'll do.  Politely argue?  Grudgingly agree?  I guess we'll cross that bridge when we get there.  I do know that if that's the route we have to go, Rylee will do it... she'll be mad and not like it, then flash a smile and give a hug.  Rylee-style. 

And as for me?  I'll be the one asking for the Versed.

Seriously...


We all know Carter has good manners.

Now, can he teach them to our dog Zoe?


Wordless Wednesday


"Not My Child" Monday!



There is an amazing blog out there that I've been following for awhile now and I don't even want to tell you what it's called because if you read it once, you will never want to read my blog again!  The author, "MckMama", began a Blog Carnival called "Not Me Monday," which, in her words, "was born out of my desire to admit some imperfections and reveal moments I'd rather forget!"  Her post each Monday is hilarious, and I've definitely been toying with the idea of joining in on this... though I don't know if I want to admit that I'm not perfect, since I'm sure you all think I am.... why are you laughing?   Maybe one of these Mondays...

However, TODAY she is changing it up a bit... and it's "Not My Child Monday!"  It was the perfect week to join in on this one, since we've had some interesting moments lately with the kiddos!!

*****
When spending the day at the softball fields, watching Jordyn play ball, Carter did not dump the entire bag of popcorn I bought him (to keep him occupied) on his blanket.  He then did not proceed to eat the popcorn with his filthy, dirty, ball-field-dirt-covered hands.  I absolutely would not let him do something like that, since I am very germ-conscious and always have very clean children.



When realizing that there was another, way more fun way of eating his popcorn, Carter did not bend over and eat the popcorn with his mouth, the way dogs eat their food.  He also did not sit so that his dirty feet were sitting in the popcorn he would be consuming.  That would be totally unsanitary and he absolutely would not do that because Jeremy and I have taught him incredibly good manners.  (I mean... seriously?  Remember the apology to the water bottle?)



*****
At those same softball fields, Rylee did not make dirt angels in the vacant field next to the field Jordyn was playing a ball game.  She did not run around barefoot all afternoon (because she knows there may be dangerous "owie" things laying on the ground), and she most certainly did not skip a bath that night because Jeremy and I were tired from the long day.


*****
Just after I took his wet diaper off, and just before I got a new, dry one on, Carter did not get up and run around, wearing only his t-shirt.  He did not proceed to play in the living room, diaper-less, because I got distracted and forgot he wasn't wearing a diaper.  When I came back into the living room later, Carter did not suddenly begin potty-ing... on the floor... right on a pile of books.  He did not stand there, first with a look of puzzlement, and then begin laughing hysterically.  Carter knows how to be polite, and he just wouldn't do such a thing.
  
*****
While I was at the store, Rylee and Carter did not dig in the winter drawer in the closet and pull out hats and gloves.  They did not put them on, sneak by Jeremy without him seeing, and head outside (into the 75-degree weather) to play. When I got home, they did not run up to me and show me their apparel.  They know the difference between seasons and would not do such a silly thing.  Even more, they did not keep the hats and gloves on while helping Jeremy and me plant new bushes in our backyard.  That would be absurd and they simply would not do that!




*****
So there you have it... actually, in looking back, there was a bit of "Not Me!" mixed in with "Not My Child!"  Crazy how what your kids do reflects right back on you!!  

But, not to worry.  Our kids certainly did not do any of these silly things anyway.

Who...


Who


makes


us

laugh

like


this?

It's

our


dad,


that's 


who!


The Road to Rylee's Tonsillectomy - Part 3


Symptoms: Snoring -- worse than ever before!
Doctor's Recommendation: Sleep Study -- yes, again!
Course of Treatment: To Be Determined After Sleep Study... sound familiar?

We did get our wish of a less-stuffed-up winter!  In fact, we sold some of our stock in Kleenex, knowing it would drop without our weekly purchases.  However, March came, and things started to change.

Rylee began snoring worse than ever before.  She started sleeping more but complaining of being tired all the time.  (And she never before had verbalized that.)  She began eating less and showing signs of lethargy at home and at school.  The only way to determine what had changed was another... (gasp)... sleep study.  Really?  Seriously? There's got to be another way.

But, her doctors were still set on needing "sleep study proof" that a tonsillectomy was necessary.  No signs of sleep apnea meant that tonsils would stay.  If she even showed slight apnea, her ENT said he would then feel justified in taking her tonsils.  And, he said, while he was in there, he would make sure her adnoids hadn't grown back.  Um... what?  Adnoids can do that?  Well, that's extremely inconvenient.

So, we don't need to elaborate much on sleep study #2, which was done just after school let out in May.   It was pretty much as miserable as the 1st one. I began "gearing" her up for another "sleepover with mom" (much to my dismay.) Unfortunately, the word "sleepover" rang a bell... and not a pretty one, either.  (Poor girl... she'll get invited to a real friends' "sleepover" someday and never, ever want to go!)

Here is Rylee, with her head wrapped (again.)  She was unhappy (again) and kicked and cried (again) and we had to hold her down to get everything on her (again.)  She calmed down enough to have a snack and watch a little Care Bear movie... 



After finally getting her to sleep, the nurse finished getting her ready.  Unfortunately, she didn't stay asleep like she did during the 1st sleep study.  Her attempt at pulling wires off was a drowsy one, however, and she didn't succeed.  A few more stickers here... a few more wires there, and somehow I got her back to sleep.   Amazing what a shot of vodka will do to a 5-year-old.

Again, here's Rylee... experiencing a typical night's sleep?  Um... okay.


Waking up the next morning was, well, just as it was the first time... playing a movie (that's what Rylee's looking at in the picture!) and getting her un-attached as quickly as possible.  Then, it's "hit the road" time.  I couldn't get us out of there fast enough.


So, we all breathed a sign of relief (again) that the sleep study was over, and we waited for the results (again.)

Wordless Wednesday


Manners... gone too far?


Today I ran into my office to grab a few things while the kids were eating snack.  They were both at the kitchen table, enjoying grapes, watermelon and water.

I heard a little "thud", which I knew immediately had been Carter's water bottle falling over on the table.

Then, I hear Carter say, "Saw-wee wah-dah." (Sorry water.)

Apologies to the water bottle.

What great manners.  But, have I gone too far when apologies are given to plastic?

The Road to Rylee's Tonsillectomy - Part 2


Results of Sleep Study: Normal; No Sleep Apnea
Doctor's Recommendation: Adnoidectomy & Placement of Tubes in Ears

So we get the results of the sleep study back.  No sleep apnea.  Really?  Are you sure?  Can you check again?

But, we still had the issue of snoring, as well as upper-airway congestion.  (Rylee is one huge cold from October to March.)  So, her doctor recommended removing her adnoids only.  

"Shouldn't we just remove her tonsils since we're already putting her under?  No?  Really?  Are you sure?" 

Tonsillectomies, in the "old days" (as I'm told, since I'm much too young to remember... no really, I am) were very routine -- they performed them on nearly anyone.  "So, just to recap, you'd like a Big Mac, large fries, and a Coke... do you want your tonsils removed, too, just since you're here?"  

Okay, so maybe not that routine.  But more than today.  Now, they are more conservative.  And especially conservative on kids with a more complicated health history, like Rylee.  

So, we were torn.  Do we push hard to have her tonsils out along with adnoids?  What if she has a difficult time with things and it wasn't necessary... then we have the pleasure of feeling guilt for the decision we made?  If later, she does need her tonsils out, then we'll be kicking ourselves that we had to do 2 surgeries.  Where is that darn crystal ball?  We talked with her ENT and pulmonologist, and they both recommended leaving her tonsils alone because of her "sleep-apnea-free" sleep study.

Okay, so let's just take out her adnoids.  And while we're in there, let's throw some tubes in her ears, just to help with drainage, etc. 

Recovery from an adnoidectomy is pretty quick... because your adnoids are high on each side of your throat behind your nose, they don't affect your eating/drinking (like removing tonsils.) So, you're in, you're put under, you come around, you're out, and you're home!  

Okay, simple when you're an adult.  More difficult when you're 4.  (Rylee had her adnoidectomy last October.)

We did all we could to prepare Rylee for the surgery... but surgery day came and we just had to get it done!  Here she is, shortly before surgery, playing doctor to the hospital bear.  "Now, see, Mr. Bear... you just breathe in and out really deep with this on your mouth, and then you'll fall asleep.  That's what they tell me anyway."



Rylee got a little dose of Versed before being taken to the OR.  (We didn't want her having a last-minute panic-attack.)

"Oh Dad... I'm getting a little drowsy from the medicine they gave me.  You know how you can tell? Because I don't care one bit that they're taking my blood pressure.  And you know how much that usually bothers me!"  (We get a blood pressure reading on Rylee once in every seven tries! She doesn't consider it to be a friendly little "hug" like the nurses say it is, and she hates it!)


We asked that either Jeremy or I go back with Rylee to the OR... when Jeremy saw the oh-so-flattering big white jump-suit and hairnet required to enter the OR, he kindly gave me the honors.  Rylee was okay with heading back for several reasons. 1) She got to ride in a wagon 2) She was a little loopy from the medicine (you can see it in her eyes) and 3) Mom got to go back with her... (not that she could tell it was me in my sexy outfit.)

Putting your child on an operating room table is not fun.  (Can I get a little Versed myself?) The nurses can be fabulous and reassuring... the doctors skillful and the anesthesiologist knowledgeable, but it's still tough. The medicine given to them beforehand helps, but for about 5 seconds, while the nurses hold the mask over their mouth, it's yucky.  Your child squirms a little, and their eyes get really big, as if to say, "Why are we doing this again?"  You blink back tears, smile, reassure them, rub their hand and then it's over.  Your child is out like a light, dreaming about bike-riding and ice cream.  The nurses politely shoo you out of the room, and you head out to the hallway.  But, while you take off your hairnet (so no one else sees you looking so fabulous) your eyes tear up, and you get a lump in your throat.  You hope your child doesn't remember those 5 seconds. You, unfortunately, will.



The surgery went well, and we got back to the recovery room as quickly as possible to see her. We were able to talk her into a popsicle... getting her to eat/drink something was our requirement for going home.  We had a tough 45 minutes or so until all the anesthesia wore off.

Here she is, not incredibly thrilled about life - or the IV.


"Okay, Mom... I'm a little better now.  I'll give you a smile, but I'm sure tired!  Let's go home!"



And home we went!  She took pain meds for a few days, but she bounced back very quickly! Fortunately, the experience did not scar her... she was quite excited about all of the "doctor stuff" we acquired, and for the next several months, Dr. Rylee performed various exams on dolls, stuffed animals, Moms and little brothers at our house!  (If you remember, Dr. Carter even put in some hours at the Griffith Hospital.)
 

We were hopeful that we were done with sleep studies, surgeries, and all things medical.  We looked forward to a winter of less stuffy noses and sinuses.

You can hope all you want... but sometimes, it just doesn't work out that way.

The Road to Rylee's Tonsillectomy - Part 1


Some of you have expressed interest in understanding why Rylee had a sleep study done last fall, resulting in the removal of her adnoids in October, another sleep study done in May, resulting in removal of her tonsils this week. Well, for those of you who enjoy strolling down the "medical-history-lane" of someone else's child, here ya go!

*****
Symptoms: Snoring
Doctor's Recommendation: Sleep Study
Course of Treatment: To Be Determined After Sleep Study

*****

Last fall, Rylee's doctor recommended we have a sleep study done on her.  She was really starting to snore loudly, and we began to wonder if she was experiencing sleep apnea.  (Kids with Down syndrome are at a greater risk of experiencing OSA, or Obstructive Sleep Apnea, because of their narrow passageway of nasal/throat area and low muscle tone.  Many kids with DS also have enlarged tonsils and adnoids.)  Snoring is not necessarily a big deal to all kids, but it does put increased pressure on the lungs, which in turn puts pressure on the heart.  And, in Rylee's case, with her having had heart surgery at 20 days old and 3 months old, and now having a heart murmur and a moderately leaky heart valve, we don't want extra pressure on her heart.*

* I am not a doctor, so you may find my descriptions simple.  (And hopefully, if you are in the medical field, you don't find them inaccurate!) 

We knew it wasn't going to be easy, but we also knew we needed to see what was going on during Rylee's sleep.  So, we did what we could to prepare her.  I talked with other parents whose kids had done sleep studies to get any helpful tips; we took a tour of the "sleep lab" (a small hospital-like room at the sleep clinic); we got some of the exact medical supplies they would use on Rylee so she could do a "sleep study" on her babies at home.

In fact, here is Dr. Rylee, preparing her baby for our home sleep study.


They explained to us that they would need to put 6-8 sticky electrodes on Rylee's head, and then they would wrap her head with gauze to keep them in place and keep Rylee from tearing them out of her hair when she flails about in protest of the sleep study.   So, at home, we practiced just that... Dad and Carter even got in on all the "fun." 


We talked about the fact that she and I would be having a "sleepover" and that Carter and Dad would have a "sleepover" at home.  We said that Grandma Cindy would even come for awhile (until she fell asleep) to help me hold her down while they got her hooked up to everythingvisit us!

But, no matter how much you talk about it... no matter what you do to prepare them... it's just different when you walk into the room and see all of this on the bed.


Well, I'm not much for bribery.  That is, I wasn't much for the idea of bribery... until I had kids. No, really, I do try very hard not to resort to bribery.  But, there are times... and this was one of them.  I had my bag backed.  I had snacks and favorite toys and movies and whatever I thought would work.  But, nothing did.

Nothing hurt Rylee.  All they had to do was put all of the stickers with wires attached on her -- but, not truly understanding why they were doing it, and it visually looking very scary to her was enough.  She didn't like it.  No, I mean really not like it.  Unfortunately, we wound up holding her down to get the stuff on that we HAD to before she fell asleep.  (We could attach some of the stuff afterward.)  It was brutal.  I think it was worse on me than on Rylee, to be honest.

(No pictures for this portion of the sleep study... I may be talented in some areas, but holding my child down while they attach 817 wires on her while taking pictures to document the event isn't one of them.   Actually, I didn't want any photographic evidence of me holding Rylee down.

We got all the stuff on her head, wrapped her up, and then did everything we possibly could to distract her from the wires hanging from her head.  We just needed to get her to sleep. Fortunately, she was so darn tired from failing about that she fell asleep quickly, and hard, too. While sleeping, we were able to get the rest of the "stuff" on her.  And she didn't wake up.  Yes, a miracle.

Now, I'm not a sleep expert, nor do I claim to be one.  However, I am quite baffled by the concept that doctors can get readings of a typical night's sleep when someone (especially a child) wears all of this to bed.  And a strange bed, at that.


But, I guess that's supposidly what happens.  And, because I'm not a sleep expert, I will believe them. 

Rylee woke up the next morning, ready to get outta there.  Here she is, enjoying her favorite snack of Cheddar Bunnies (yes, for breakfast... remember I said I bribe if necessary) so we could get her "un-attached" from all the wires.  We took the poor kid home and soaked her in a bath to get the "stickers" off. 


We all breathed a sigh of relief to have the sleep study over, and we waited for the results.