Monday, April 20, 2015

CPAP for Obstructive Sleep Apnea

Has it really been over a month since I last blogged about Ellie's sleep issues???  Apparently, it has.  This is where we left off: Treatment plan and health risks associated with obstructive sleep apnea [OSA].  To learn more about Ellie's sleep issues, read here.  But first, a few little photos from Easter:





We finally got in to see Ellie's ENT doc at the beginning of March.  Her sleep specialist fought to get her an appointment back in mid-February, but the ENT was out of town.  Anyway, the purpose of the ENT appointment was to evaluate whether or not Ellie's adenoid had grown back.  If so, we would then proceed with a repeat adenoidectomy (because surgery is so much fun!) in hopes that would "cure" her OSA and "oxygenation instability".  I had 2 choices: lateral neck x-ray or a flexible nasal laryngoscopy.  I went with the laryngoscopy.  Yes, it sounds mean, but it is quick.  It provides more detail information.  Plus no radiation is involved. Plus, I have this perverse obsession with seeing people's insides (it is the nurse practitioner in me - especially being a former ENT NP).

Ellie's procedure was the pic on the right.

This is how it went: the nurse kindly sat with Ellie.  Her legs over Ellie's and her arms around Ellie's. I then stood behind the nurse with my hands holding Ellie's head straight. Now, a laryngoscope is essentially a spaghetti-like noodle with a camera on the end.  It passes through the nose and looks at the structures of the upper airway.  It can be used to diagnosis enlarged adenoid and tonsils, enlarged base of tongue, laryngomalcia (floppy airway), abnormalities of the vocal cords, and even reflux.  How did Ellie Bear do, you ask?  Well, she fought it all while screaming "NO THANK YOU!  NO THANK YOU!  NO THANK YOU!"  Girlfriend is nothing, but polite.

The findings were not what I was hoping for.  It may sound strange, but I wanted that adenoid to be there.  She is obstructing.  She has had nearly nonstop sinus infections again since August.  If it had regrown, we could have "easily fixed" it.  Nope.  The adenoid did not grow back.  While she does not have an abnormally large tongue, she does have a large tongue base.  She also has not only a high arched palate, but a long palate that dips into the upper airway.  At rest, between the tongue base and the palate, she is already in a partial obstruction - this is while awake and upright.  With sleep, the muscles relax and while laying down, it allows everything to collapse back into her airway.  We also learned that she had reddening of the epiglottis suggesting reflux.  Goody.

Depicts large tongue base causing obstruction of air flow
Photo courtesy: Dental Magazine - unable to find vol #

Take the above pictures and add it to the pic below and that is Ellie's anatomy

Depicts soft palate obstructing air flow

So guess what we have been doing these past few weeks?  CPAP mask desensitization!  The fun never stops.  By the time all was said and done - the doc writing the script, insurance approval, equipment ordered, and equipment training, we finally started on March 26th to desensitize Ellie towards wearing her CPAP mask.  Let us pause for a moment to think about how that.  Desensitize.  Ellie.  Is it going to take years like bath desensitizing did? Save me now!

It's Fighter Pilot Mickey


Continuous Positive Airway Pressure [CPAP] is considered to be a type of ventilation therapy in which positive pressure is blown into the airway as a treatment for obstructive sleep apnea.  We are trying what is called a "Pixi" mask.  This is a mask that fits over her nose only, as opposed to a mask that fits over both the nose and mouth.  You need to create a tight seal or otherwise the pressurized air will leak around the mask.  If she starts to mouth breath, the air will escape so there is a strong possibility she will need the full face mask. 

During Speech and OT.
We have adjusted it since then so that it isn't digging into her face.

You can just imagine how this is going.  My daughter has some significant sensory avoidance issues when it comes to her face, hair, and head.  Tooth brushing requires some interesting gyrations, which involve my legs over hers and my arm holding down her arms.  Combing or washing her hair is considered a form of torture.  Now she has to wear a mask over her face?  One that blows pressurized air into her face?  Right. . . 

Co-therapy between speech therapist and occupational therapist
in the sensory gym.  Also trying out a compression vest since Bear has
been behaving like the Tasmanian Devil on steroids.

So desensitizing is a  s l o w  process.  A step by step approach.  Ellie is to build up to wearing her mask for 15-20 minutes, 3 x day.  Then we add hooking it to the machine and turning it on - again 15-20 minutes, 3 x day.  After that, falling asleep with the mask hooked up to the machine and turned on.  We are making progresses. . . sort of.

"yeah, I'll totally wear it if Papa is next to me."

At therapy (ST/OT), she will wear the mask without too much difficulty.  She has worn it for 2 therapy sessions for ~30 minutes!  At home, she will touch it, but shout "NOOOOO!" when she sees me hold it.  She will allow Mickey Mouse to wear it. She will try to put it on Minnie Mouse.  Once, she tried to put it on herself - in the waiting room at therapy.  Apparently, she associates therapy with the CPAP mask now.  Once, she allowed me to put the mask over her face just before we went for a ride in the car.  I am also able to place the mask on her once she is already asleep, but am not able to turn on the actual CPAP.  Progress is progress.  No matter how slow it is.  

Traitor!  You said this would be fun. You said I was going to be a fighter pilot.
Our sleep doctor told us to follow up in 2 months time.  It is said that if she will not wear the mask with CPAP within 2 months, she will most likely never wear the mask (well at least in the near future wear the mask.  Maybe in 10 years she'll wear it, but that doesn't really help the now).  That means Ellie would have something called a Cine MRI, which is basically an MRI in motion to look at the airway while the patient is under deep sedation.  The Cine MRI helps determine if surgery is necessary and if so, what part of the upper airway needs to addressed.  So yeah, I want the CPAP to be tolerated and to work.


My little dancer who recently discovered her shadow.




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Wednesday, April 8, 2015

Connecticut, Friends, New Foods, and a DIY Laundry Room

It has been far too long since I last wrote.  Life seems to be speeding by at a fast pace lately and I don't want to miss one minute of it!  Every time I sit down to write, I am called away and as such a few weeks pass and so here I am trying to get all caught up on writing.

Earlier in March, Ellie and I headed off to Connecticut to visit my best friend Megan for Spring Break while my husband stayed behind and installed a ridiculously large hot water heater (Yes, this would be the hot water heater to replace the one that went out back in December.  Yes, I said December.  Yes, I have more pictures with a story behind the laundry room demo, but that is another blog post all together.).  I also have the most awesome laundry room sink, but those pics will come later.  As in once the laundry room has walls and the sink is hooked up and well just check back in a few months.

My beautiful, energy efficient water heater.
It is actually located in what used to be a doorway to a closet.

Our ridiculously large water heater wouldn't fit in the original laundry room.
So we knocked down a wall that connected the old laundry room to a closet.
The washer/dryer are in the old laundry room and the water heater sits in what used to be a closet.
Moving on! Ellie and I took a 6 hour long flight to Hartford where I was finally reunited with my best friend.  It had been years since we had last seen each other and while "distance makes the heart grow fonder", I really wish there weren't so many miles between us.  Megs, I am signing the "Lonely" song for you right now.

Aren't they beautiful?  You know what?  Megs is pregnant in this pic!
I am going to be an "auntie" again!

The Chunky Chicken was awesome on the flight up there.  We had a 2 hour layover in Atlanta and that was fun.  Well, not really and I have a few words over Southwest Atlanta's idea of what "disability pre-boarding" is. (Let's just say that they let a bunch of other people [like 30] from another plane board before the 3 people in the wheel chairs and the teenager on crutches.  Seriously, I got all assertive and respectfully asked the attendants just how far these people were supposed to walk to their seats and how much of a sensory overload meltdown do they want to see with my Bear?  The pilot overheard me and requested everyone in the front row of the plane to move back to accommodate those with ambulatory difficulties.).  Anyway, to distract Ellie from all the noise, the altitude pressure, and a small closed in area with a gazillion people, I implemented most of the strategies that I outlined a few years ago with regards to flying.  Although not the passenger escort tip.  Nor the carseat.  Girlfriend was in her seat solo and was pretty proud of being a "big girl just like mommy".

Traveling with a Toddler Part 1
Traveling with a Toddler Part 2

Amazing things happen when you go to a new country. . . er. . . state.

Megan's son, C, is around the same age as Ellie and I cannot get over how much he has grown.  Of course, the last time I saw him he was 6 weeks old!  It was really good for Ellie to be able to play with another kid her age and being able to see him go through the day-to-day activities such as sharing meals together, bedtime, bath time, car rides, etc.  Since Andrew and I cannot provide Ellie with a sibling and our play dates are few and far between, this was quite the treat for Ellie.  As as well as quite the developmental nudge that she needed.

Hanging out at Bertucci's. Bear touched and licked pizza twice.

During the visit, Ellie tried a bunch of new kid foods such as pizza.  She didn't like it, but she tried it twice.  We are talking about melted cheese, tomato sauce, and crust all together.  Like 3 foods touching each other. TOUCHING!  This was HUGE! She also tried and loved: a hot dog, multi-grain crackers with Havarti cheese, and penne pasta with artichoke sauce.   She actually just hopped into my lap and devoured half of my pasta. . . my dinner. . . she stole it.  I about peed my pants with shock and excitement.

AND she slept!  As in all night for more than 5 hours at a time. On a fold out futon.  In a strange place aka the playroom.  She slept past 2:30am each night.  Did I mention that Bear slept!?  As in sleep.  As in shut eye.  As in counting your Z's. It official, y'all! We are moving to Hartford and into Megan's house for my own sanity's sake.  Megan, here we come!

"My darling C with those puppy dog eyes.  I just love you.  I will sit so nicely next to you
in this cart and share my cracker with Havarti cheese with you."


Oh and girlfriend sat in a Costco grocery cart without screaming, standing, or climbing out.  Nor pulling food off the shelves.  Or pitching a fit. Or me having to bribe her with ice cream.  Why?  Because she was  in-love.  "Oh my darling, C.  You are so handsome and strong and sitting in that cart so nicely.  I must sit next to you and make eyes at you.  Sigh. " 

The most heartwarming thing was to see C and Ellie play together.  C would come home from school and ask to see his friend Ellie from Taxis (Texas).  He treated her just like any other kid, which is sadly something we no longer see too often, even amongst family.  C is a little charmer with a  big heart and these big brown eyes that seemed to hypnotize Ellie into being on her best behavior.

After going to the Kid City Children's Museum, we checked out this local cupcakery.
Bear was so excited to see the mini-chocolate iced cupcakes.  Strangely, she didn't eat more than 1 bite
of the cupcake. I am questioning whether or not she is truly my child.


For myself, I have to say that most exciting part of the trip was the lack of electricity for several hours.  You know, when you have a well that runs off an electric pump so that you not only have no lights, but also no water?  Yep.  No water.  Not to fear, y'all!  Apparently, this occurs more often than my best friend would like to admit as she owns a back up generator.  When it became apparent that the power wasn't coming immediately back on or just back on in the near future, the excessively loud, roaring generator gave power to the refrigerators, the well pump, and to some of the outlets in the master bedroom.  Most importantly, there was power to the television in the master bedroom and we got to watch The Mocking Jay Part 1.  It was just like old times.



Added bonus, Megan and I went out alone, together, without the kiddos to a movie.  Like a real movie in a movie theater with no lights, stadium seating, and popcorn.  Not a TV.  Not a sensory screening.  Not during the day.  But a newly released in-theaters-only movie in a real movie theater at night after dark.  Now don't laugh, but Megs and I saw Frozen Fever.  Yeah yeah, I know.  Kid cartoon without the kids.  So shoot me.  It was fun! "some day my prince will come. la da da da da".  Oops, wrong princess song.

Facebook Friend Meet!

While in the frozen tundra, Ellie and I had the privilege of meeting up with my other Megan (Megan M.) and her daughter A who made a 5 hour round-trip drive just to see us! Megan M. and I met through Facebook and have chatted on an almost daily basis for a few years and yet, we never met.  It was so lovely to see her in person and spending a day with her and her darling daughter.  As it turns out, we are both talkers.  Every time Megan M. would say"it is time to leave", we would then chat for another 20-30 minutes.  This repeated a few times until it was so late, it would be dark for a huge chunk of her drive home! Isn't it amazing how you can form such a connection with a person that you have never met?  I am forever grateful for our two daughter bringing us together.

Hello Kitty rainboots. Check!
Double socks, shirted, pantsed. Check!
Borrowed winter coat. Check!
Borrowed hat. Check!
Borrowed snow gloves. Double Check!
You can find most of these things in Austin in March, FYI.

Our visit was over all too soon, but we encountered an unexpected surprise. Ellie and I were supposed to return home on a Friday, but the first leg of our flight was canceled due to bad weather in Baltimore.  While we could have been routed through 5 other cites, all flights to Austin were fully booked until late Saturday evening.  Thank you SXSW for bringing much business and traffic to our eclectic city of music. Consequently, the Bear and I got to spend the rest of Friday and a huge chunk of Saturday with Megan and family!  It also meant that Ellie got to play in the snow. . . something that just doesn't happen in Austin.  Being the perfect imitator that she is, Ellie learned how to shovel snow, make a snow angel, and sled as well as get intense sensory input by "tasting" a snow ball. Oh how I miss snow!

Don't worry. . . it wasn't a "yellow snow cone"

Because the flight from Baltimore to Austin was after her usual bedtime, she slept almost the entire way!  That means I got to start reading a good book, Motherhood Unexpected by Deanna J Smith




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Monday, March 23, 2015

A Typical Tuesday according to Miss Kamdyn









When Ellie was younger, I didn't know really anyone else with Down syndrome.  I was overwhelmed with trying to juggle doctors' appointments, new motherhood, as well as update a whole slew of people.  I started to write a blog to keep everyone in-the-loop. . . only none of the intended people read The Chronicles of Ellie Bellie Bear.  BUT, I started to follow other bloggers with children with Ds and they started to follow me.  One thing lead to another and some of us became Facebook friends--which is awesome because I totally wanted to stalk, er, follow this beautiful girl; Kamdyn.  Tricia from Life is Beautiful has graciously written a Typical Tuesday post from Kamdyn's point of view.


Hi, everyone!  Here's a little peak into some things about my day.  First of all, if you don't remember, a few months back, I had hand surgery.



My arms were in casts that went all the way down to my thumbs.  Mommy thought that the one silver lining of that 2 week recovery was that I would stop sucking my thumb.  Little did she know, I am not giving up my thumb!



Silly Mommy underestimated my persistence.

After a peaceful night of thumb-sucking and possibly waking up in the middle of the night to go sleep in Mommy's bed, I wake up and get ready for my day.  On Monday, Wednesday, and Friday, I go to preschool in the morning.  I can put on my own pants and shirt if it doesn't need to be buttoned.  Mommy got me a lot of dresses with leggings, because they are easy for me to put on and pull down for using the potty.  I'm still not potty trained, but I'm working on it.

Mommy does my hair.



I hate having my hair done.  It really bothers me, and I usually cry.  Mommy usually puts it in a pony tail, because it's fast.

I like to put on my shoes by myself.  Sometimes I will even put on my shoes and sneak out the back door and try to go play.  But Mommy has to help with my shoes and sure steps, because they are tricky.  The doctor told us that my ankles still turn a lot, so I have to keep wearing my sure steps.  I don't mind wearing them now, and Mommy got "chips" from the doctor that help them not rub against my foot.  They have been much more comfortable since we got the "chips".


I also need glasses, because I am nearsighted.

Multi-grain cheerios is my favorite breakfast.


But sometimes Mommy lets me have cake and yogurt.


Other foods that I like to eat are marshmallows, broccoli, and sauteed peppers.



School is a lot of fun.  I get to play with friends, read books, do crafts and art projects.  Our class made "All About Me" books, and I like to sit at the table and look at all of the "All About Me" books.

At home, I like to play dress-up.





I like sensory play with water, sand, and rice.


I also like to paint.



My favorite movie is Frozen.  My favorite shows are Caillou and Daniel Tiger.


I also like it when Mommy takes me to the library.


The last time we went, I gave Mommy a break by not trying to escape when she wasn't looking.  Ever since I took a solo ride on the elevator that one time, she watches me REALLY close.

Some of my other favorite activities are:

Removing items from the refrigerator.



Climbing the cabinets, usually to get marshmallows or candy.


Sitting in silent protest when I'm not getting my way.


I am slightly addicted to the iPad.  I have one of these schedules to help understand when I can have time with it.


Sometimes my little sister is really pesky while I'm trying to watch one of my favorite on the iPad.

If she's bothering me too much, I will go into the bathroom and shut the door to try to get away from her.

But we have fun together too.

    


I also like to help Mommy with dinner.



I love my family. They are the best.



Thank you both Kamdyn and Tricia!

You can continue to check out Kamdyn's antics at:
Life is Beautiful

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