Thursday, May 29, 2014

The Bear goes to a wedding and the church is still standing; plus acts of sassines

*These are all cell phone pics.  I apologize of the poor quality.

This is what we have been up to.

Actually, the above is a daily theme.  Run Chicka Boom run! 

I have neglected this blog for the past few weeks, but I have a great excuse.  VACATION!  A WEDDING!  My husband, Ellie and I flew into Chicago and then drove a very long time to Stoughton, WI where were shared a "cabin" with my parents off Lake Kegonsa.  We stayed there for 5 nights with my brother and his fiancĂ© stopping in for grilling, winery tours, and pure relaxation.  

My parents with Ellie. Bear has style with all those headbands.
The Koffee Kup.  Yummy pancakes.

Over the weekend, we all caravanned to Rockford, Ill for Matt and Amber to tie the knot.  I was the Matron of Honor :-) Ellie was the Flower Girl.  I know what you are thinking. . . Ellie was beautiful.  She was a stinker.  Did she actually go down the aisle?  

Even though girlfriend is nearly 5 years-old, she is developmentally hanging out around 2.5-3 yo  level.  Perfect tantrum age.  Contrariness.  Attitude.  Thirty-pounds of dead weight when pulling the Boneless Toddler Drop.

The rehearsal was quite interesting.  I was to walk Ellie down the aisle.  Come on!  You didn't actually think we were going to let her walk by herself, did you?!  She did the diva walk and then threw herself onto the altar.  She would not get off the altar.  She screamed because all the bridesmaids and groomsmen were on the altar. She wanted to climb on the minister and call him "dada". 

The decision was made that Andrew would physically pick her up at the end of the aisle and then take her outside for the ceremony.  

Ellie's favorite person: my brother Matt.  Ellie actually has Matt's eyes.

Surprisingly, Bear was a rockstar at the rehearsal dinner.  She SAT and colored.  Well, she sat at a completely different table by herself and colored.  Miss Independent.

I got attacked by a nerf gun.  Thanks, John L!  

The Wedding:

I cried.  A lot.  I cried when Amber was getting her hair done.  Then teared up while the woman was doing her make-up.  I about lost it while standing on the altar during the ceremony.  Amber was so beautiful (I forgot to ask permission to share her photo so maybe you will get to see her in the future!).  My brother looked positively smitten when he got that first glimpse of her.  

There was a jacuzzi tub in our hotel room.  Ellie thought it was a playscape and
kept moving her toys in there.

As for Ellie.  Oh Ellie Ellie Ellie.  We had been dealing with some GI issues for a while now.  She decided to pull the opposite problem on the day of the wedding.  Andrew got to the church late because she needed and emergency bath.  I am so thankful it happened before she was in her dress.  Ellie did NOT want to wear her wings.  She did not want to line up with me.  She wanted to run full throttle down the aisle before everyone.  She screamed.  She went boneless.  I am certain the whole church heard her.  Just before it was our turn, I plunked those wings on her and marched her down the aisle.  She was lovely and went right to Andrew.  No shenanigans.

Sorry it is so blurry but you see the wings!  Do you see her WALKING nicely?

Girlfriend colored the whole time at the reception while stuffing her face with cookies and held off the second need for a bath until after the reception.  Poor Andrew got stuck scrubbing the floors of the hotel room with a towel and bar soap because someone tried to change her own diaper.

The Lavatory Situation:
Our trip home when like clock-work for the most part.  I would like to mention that we flew on American Airlines.  We had to wait 30 minutes to board our plane due to a "lavatory situation".  When I texted my mom, she though we were talking about Ellie.  No, this was not Ellie.  In between each flight, the fecal matter from the lavatories on the plane are pumped out.  Someone pumped it INTO the plane.  As in the bathroom on the plane flooded with urine and feces.  The supposedly "deep" cleaned it but it stank to high heaven the entire flight.  Everyone was gagging and complaining.  We felt so filthy that we had to have "emergency" showers upon getting home.  Did I mention this was American Airlines?  You think that I would learn after last year's debacle.

Moving on!  Ellie Bear has a wicked sense of style.  I mean, why wear one of something when you can wear 3 or 4 or 5?

The Dueling Chewy tubes: 2 chewease + 5 kid companions 

Headbands have become quite the in-thing.
She likes to wear 4-5 of them at the same kind to form a turban-like head piece.

Ellie is really into sorting object by color, size, and shape.
She is starting to build more elaborate towers.

I really have no explanation for this get-up.
winter boots, big orange sunglasses with a pink headband, of course.

Tomorrow is Ellie's last day of school.  I am certain that this summer will be rather entertaining and exasperating.  Tune in for more Ellie antics and my bemoaning lack of childcare.


Wednesday, May 14, 2014

The Chicken

I hear from other parents how they cannot take their child down a toy aisle with out the "mommy mommy, I want this. . . I need this!".  I do not have that problem with Ellie.  She appreciates looking at the toys and will point things out to me, but she never asks for them and she never expects them.

When it is time for her birthday or Christmas, I have to guess at what she wants.  Usually I see what she likes at therapy and other people's houses.  The toy that she is loathe to leave.  That is why we have the Little People Princess Castle.  Which she never plays with at home, but goes nuts over at ABA therapy.  Or the Little People House that sits in her closet, but obsesses with at play dates.  Because it is always better at someone else's house.

Well, I finally figured out what she wants. . .

a 6-foot tall metal chicken.

It all started as a joke between friends.  It was Michelle's birthday (don't worry, I won't tell them your age!).  Andrew, Tori, Christine, and I thought it would be hilarious to give Michelle this chicken.  You know, ring the door bell, and when she opens it a chicken is there to greet her!  Seeing as we are the ones with the truck, Andrew and I had to be the ones to transport it.  Oh the stares and waves we got driving down 183!

Ellie Bear was with us when we picked up the chicken.  As it was being loaded into the truck bed, her face lit up.  A huge, beautiful smile.  Followed by "yeah yeah oh yeah YES!!!!" and lots of gracious "ank ooooh, ank oo, ank oo" coupled with the dramatic signing of "Thank you!".  It seems that girlfriend thought the chicken was for her and she was profoundly thanking us for this glorious gift. . . of a large metal chicken 3 times her size!

So how did Michelle like the chicken?  I am told it was fabulously received.  We didn't get to witness the event as someone, ahem Ellie, pulled a no-nap cranky-pants tantrum and we missed the festivities.


Monday, May 12, 2014

ARK Therapeutics Give Away WINNER

The ARK Therapeutics Every Lip Blok Combo winner winner is:

This is a great review! We were just told by our speech therapy to look into getting these to help Ryder keep his tongue in his mouth. I'd love to win these so I don't have to purchase them. :). We are also working on self-feeding and dressing and jumping and running.

Chriss, please email me your name and address to and I will have ARK Therapeutics send you the Lip Bloks ASAP.

Please remember that you can receive 10%-off the entire ARK Therapeutics store until June 15, 2014 by using coupon code ELLIEBEAR10.


Monday, May 5, 2014

Proper lip closer, straw drinking, and ARK Therapeutics GIVE AWAY

When Ellie Bear was transitioning off of a bottle, we [we being the collective of myself, Andrew, and therapists] immediately implemented the straw cup.  Our thoughts were "most places have straws, but none have sippy cups".  Ellie started to drink rather quickly from a straw which was really quite impressive given the fact that most children Down syndrome have low muscle tone or hypotonia.  This means that the muscles of her tongue, lips, cheeks, and jaw muscles have low tone and difficulty coordinating.

Until recently, I never really paid attention to how she drank from her straw cup.  Ellie was inhaling the entire straw.  Not only that, she was not achieving lip closure, which is very important for not only drinking but also for speech sound production!  Rather than pursing her upper and lower lips around the straw, she was using her tongue as a base; a substitute for her lower lip.  This meant the straw was going into her mouth more than 3/4 inch!  Ellie also likes to bite the straw which can be quite a pain as it cracks both the cheap restaurant straws and the thicker plastic straws.  Girlfriend has quite the bite! Ellie is also unable to obtain proper lip closure around those narrow, tiny straws that you see with juice boxes and Capri Suns (think coffee-stirrer-type straws).  Her tongue would protrude and the juice would dribble down her chin and all over her clothes.

It is difficult to see but her tongue is supporting the straw.
The straw is also pretty far into her mouth.

For the past month, we started implementing the Lip Blok through ARK Therapeutics.  This company provides a wide variety of sensory and feeding materials for children.  Yes, chewy tubes!  The bear cup! Various feeding spoons!  Here is where I tell you: I was contacted by ARK Therapeutics to write a review on one of their products.  Knowing that Ellie needed help drinking from a straw, I chose the One-Way Straw with Lip Blok Kit.  While I am not being paid monetarily to write this post, I did receive the Straw Lip Blok Kit for free to write a review on it.  The opinions in this post are entirely my own.

At this point, you are probably wondering what a Lip Blok is.  It is this:

Essentially lovely thing prevents the child from pulling the straw too far into the mouth.  It encourages the rounded lip closure using the bottom and upper lip.  It discourages tongue thrusting by forcing the tongue to retract back into the mouth/oral cavity. It also prevents the dreaded straw biting and thus straw cracking/breakage. It is advised to start at 3/4-inch and then decrease to 1/2-inch and further to 1/4-inch.

The kit also came with 3 straws that have a one-way valve and clips.  Ellie was adamant that we use the yellow straw because yellow is awesome by Bear standards.

During speech therapy, we placed the straw into Ellie's mouth and marked where her lips were hitting the straw.  It measured at ~ 3/4 inches, which was the size of our Lip Blok.  We inserted Lip Blok into the straw and let her get used to it.  Now that she has gotten the hang of it, we have swapped it out for the 1/2-inch Lip Blok.  This requires Ellie to work a little harder at getting her tongue, lips, and cheeks into the correct position for drinking.  She is fighting me a bit, but it is slowly getting easier for her.  After she masters the 1/2-inch, we will then move on to the 1/4-inch Lip Blok.

My Review of the ARK Therapeutic 3-Straw Clip with Lip Blok Kit


  • The straws have little clips on the side of them so that you can clip it to an open cup.  This prevents the straw from slip-sliding around.
  • The Lip Blok is BPA-free, Lead-free, phthalates-free, and PVC-free
  • The Lip Blok is also latex-free which is a big deal for me since I have a latex allergy.
  • The Lip Blok very easy to toss into my purse or the diaper bag.  It is nice to not have to lug a cup around.
  • The Lip Blok fits into regular straws that you find at restaurants--just insert the long end into the straw.
  • The Lip Blok also fits swirly straws--slide the long end of the Lip Blok over the swirly straw.
  • The Lip Blok is also dishwasher safe. . .  did you hear me?  Dishwashers safe!  
  • ALL the products by ARK Therapeutics are easy on the wallet.  Honestly, wish I found them earlier when I was scavenging for chewy tubes.  I would have saved myself a pretty penny!
  • ARK Therapeutics has great customer service.  See below.

This is not actually about the product, but the way the directions and website are worded.  I requested the ARK's One-Way Straw Clip Assembly.  The description says:

ARK's Straw Clip helps manage difficult situations by holding the straw securely to the cup. Assembly includes: 3 one-way straws with a built-in valve, 3 Straw Clips, and 1 Lip Blok™. Colors may vary.

I received the 3 straws with clips and the 1 Lip Blok.  When I read the directions, they said that I could trim the Lip Blok using a scissors.  It even showed a pictorial diagram of the scissors trimming the Lip Blok. I thought that was pretty doubtful as the Lip Blok I received was really firm.  The directions discussed starting off at 3/4 inches then trimming to 1/2 inch and eventually ending up at 1/4 inch.  Needless to say, I was unable to trim the Lip Blok and partially massacred it in the process.

Apparently, there are various types of Lip Bloks offered from ARK Therapeutics--flexible Lip Bloks and firm Lip Bloks. The Flexible Bloks can be trimmed.  The Firm ones, cannot.  This did not seem very clear to me.  The customer service reps at ARK Therapeutics explained this to me and were kind enough to send me Lip Blok 3-sized Hierarchy Kit.  They arrived very promptly in the mail and I was able to start Ellie on the 1/2-inch Lip Blok immediately.

Therefore, if you decide to purchase any of the Lip Bloks or kits that include Lip Bloks, read very carefully and do not hesitate to contact customer services with questions.

She actually doesn't need my help holding the cup or the straw. . .
I am just trying to prevent her from dumping the water out.

ARK Therapeutics is offering Ellie Bear's readers a 10% off all products through June 15, 2014.  Be sure to enter coupon code ELLIEBEAR10 at the check out to get your 10% off!

Additionally, they are sponsoring a giveaway this week for the Every Lip Blok Combo which includes 3 sizes of Lip Bloks [1/4, 1/2, 3/4-inch] plus two flexible Lip Bloks that can be trimmed to any length [see link below for details about the product].  To enter, please answer in the comments below "What are the therapy goals are you and your child working on this summer?  The give away ends at Midnight CST on Sunday May 11, 2014.


A mask for kids with Down syndrome

Do you hear crickets?  Yes, we are here!  We are alive!  We are safe and healthy!  We haven't been inside a restaurant or store since m...