Evie's First Trip to Disney World

Hi everyone!  We just got back from my first trip to Disney World!  My mommy didn't know if I'd like it because I get scared of large crowds and noises.  She wrote me a social story about our trip before we went.  I asked her to read that book at least twice a day to me. 






Then we got on an airplane (I love airplanes) and went to Florida!   Mommy was busy going to work for 2 days. I got to swim at my Yin-Yin and Ya-Ya's timeshare resort and I loved it. 
Mommy was really happy about having something called Sonny's BBQ for dinner.  For dinner, there was no high chair in our hotel room, so Mommy pulled out a portable kids' desk for me and I ate dinner off of that.


We changed hotels to be closer to Disney World, so we could take a bus to see Cinderella.  I love singing Wheels on the Bus when we're on the bus!  Our resort was called Port Orleans Riverside.  Mommy picked it because it was a Moderate level resort with a toddler pool.  It's supposed to be one of the quietest resorts at Disney.  It was definitely quiet!  The main building where we checked in was really pretty and had lots of sofas for me to play on. It had a working water mill, a food court, and an arcade too.  I saw a big horse and carriage and said "Neigh" to the horse.  There was a boat too!

There was a problem with the resort seeing our special requests for our hotel room to be on the first floor.  So we got a royal upgrade from Princess Tiana and we got to be in a royal room instead of the standard rooms!  I loved the fireworks on the headboards! 


There was a lot of walking at Port Orleans Riverside, which looks like a plantation with a river along it. The river has snakes and gators!  We came out of the main building and crossed a bridge to come to our building.  Port Orleans is so big, the land space is as big as Epcot's!  

EPCOT
Mommy and Daddy and Yin-Yin and Ya-Ya took me to Epcot the first day.  There was a very big white ball that everyone made a big fuss over.  I couldn't play with it, so not sure why everyone was so happy about it.  It was SO hot!  We went into stores a lot to get some air conditioning.  

My favorite part was seeing Winnie the Pooh in Great Britain.  He was a big yellow bear and he was so soft!  I gave him a kiss.  I got very drowsy in my stroller and fell asleep while everyone else ate lunch in France at a cafe.  Mommy and Yin-Yin tried the Chinese teriyaki bao as part of the International Food and Wine Festival.  

Afterwards, in Norway, I walked over to the kids' table where they gave me a sticker and a suitcase baggie to collect stickers from other countries.   We used our Disability Access Pass to get on the Frozen ride, which cut down the wait in line from about 50 minutes to 5 minutes.  I enjoyed seeing Olaf, but I was scared because it was dark and there were loud snow monsters.


We stopped by the Character Meet and Greet and I met Mickey, Goofy, and Minnie.  I high-fived Mickey, did not like Goofy, and kissed Minnie.  It was a little scary with lots of people being excited, cameras flashing, and people clapping, but I made it through.


We also went on the Nemo ride, but it was also dark and loud, and I hid my face in Mommy's neck until the turtles came out. But I LOVED the Aquarium outside of Nemo's ride!


For dinner, we went to The Land, which is next to Nemo's ride, and there was a nice big area to eat a quick dinner and rest.  It was a good first day!  Not sure why everyone was saying their feet hurt. Mine felt good. 

MAGIC KINGDOM
We were supposed to go to Animal Kingdom today, but realized that the Magic Kingdom closed early the next day at 6 pm, so we switched our days.  I knew I was going to meet princesses today, and I signed "Yes" really hard when Mommy asked me if I wanted to meet princesses.




We went on the Winnie the Pooh ride.  It was a long wait for a short ride, but I did like this ride the most out of all the rides so far.  I pointed at Pooh when I saw him. 

We used the DAS pass for the It's A Small World ride.  Guys--I don't know about this ride. The song is catchy, but it's very long and they sing really loudly.  I did like pointing at the animals I saw on the ride.  But I kept asking Mommy if we could get off and she said no. 
We also went to a place called Princess Fairytale to meet Princess Cinderella and Princess Elena of Avalor.  I recognized Cinderella and blew her a kiss.  I did not know who Princess Elena was, and didn't want to stand with her for a picture.  

Auntie Jill (our Disney planner) got us a reservation at The Plaza for dinner.  Mommy told them I was sensitive to noise and they got us a corner table by ourselves.  I still asked Yin-Yin to take me outside.  

There were a lot of people hanging out in the streets to get ready for the fireworks.  But we were ready to go home.  I love being in our hotel.  I just like to sit on the bed and read books or watch music. 

HOLLYWOOD STUDIOS

We made a last minute switch from Animal Kingdom to Hollywood Studios because Mommy couldn't do another day in the 90+ degree heat, and AK is the least air-conditioned park.
We took the Port Orleans bus to Hollywood Studios, and I decided to take a nap right when we arrived. This meant that Mommy and Daddy got to go see the new Star Wars land!  Daddy was very happy.  He asked Kylo Ren for a selfie, and Kylo Ren said a very firm "NO."  Then Mommy went behind the storm troopers and got a picture with them anyway.  They went on the Star Wars simulator ride, and they only had to wait 30 minutes to get on!




When I woke up, we went to the Frozen show.  Mommy was really happy, because whenever she mentioned the DAS pass, people just waved us right on to the ride or show.  I wasn't too sure about the Frozen show, but when they sang "Let It Go," I perked up and started waving my arms.


The People Mover car ride wasn't bad.  I liked the A/C and looked around, but at some points it was very dark and I heard people screaming.  Daddy said it was from a roller coaster in the next room.

Everyone was really happy that Uncle Joe suggested we go to the ABC Commissary to eat and to rest.  I took a nap on top of Mommy for 2 hours in the Commissary.  That is my favorite place to nap.

For dinner, we went to the Brown Derby restaurant. We didn't have a reservation, but since we went at 5 pm, there was a seat, and we got a corner booth!  I wasn't scared in this restaurant. It had a nice vibe and plenty of space.

DISNEY SPRINGS
The next day, we took the ferry boat from Port Orleans to Disney Springs.  It was still really hot, but we made it to Earl of Sandwich and the biggest Walt Disney Store in the world.  There was also a Ghirardelli store, a Lego store, and lots of food.

Then we headed back to ride on the Disney Magical Express to the airplane to go home.  Daddy really liked that we could check our bags onto the plane from the hotel so he didn't have to carry as much.

It was a good trip, but I was so happy to be home, that I did a tour of my living room and asked to play flashcards at 1 am with Mommy.

See Mommy's tips below for Disney!  (She will do a separate post about sensory and tubie needs at Disney)

MOMMY'S TIPS

1. Disney app: definitely download this--you can skip the line and do mobile food orders at quick service locations, order fast passes, see your hotel reservations, find hours of each park, see bus schedules and updates, and so much more.  There's also a Disney Play app that is interactive with what's in the parks.

2. Two words: NECKLACE. FAN.
This was my saving grace for the hot weather.  If you are going in December, you are so smart.  But if you're going when it's hot, get this fan. Even the Disney cast members were asking me where I got it.



3.  Sun umbrella: If you have black hair like I do, then you know that direct sun can make you feel like your brain is frying.  I loved having this umbrella when we were walking long distances outside.


4. Cooling cloths:  I saw lots of people with these, although they bought the Mickey version. I love that I bought them cheaper ahead of time.


5. Cooling Gel Patches: I put one of these on the back of my neck and one my forehead under my hat and really felt the difference.




6. Collapsible water bottle:  Ice water is free and plentiful at any Disney quick service food place.  I just kept refilling my water bottle with ice water wherever we went.


7. Spare cell phone battery:  SO IMPORTANT.  With all the pictures you take, and surfing the net when you rest, you will drain your phone battery by lunch. This also charged my fan necklace when it died!



8. TILE for electronics: One of us lost our phone on the People Mover--luckily it was on a seat and was found, but having a TILE on your cell phone could be the difference between losing your phone and not losing it.




9. Fanny Pack:  The last time I wore a fanny pack was in the early 90's, but I have wholeheartedly embraced this again for the amusement park situation.  It kept my hands free, and I easily stored my wallet, Evie's glasses, Magic Band for Evie, and my phone in this one!


 10. Stroller Fan:  I am annoyed that I left this at home and kept wishing I had it for Evie's stroller.  She definitely felt the heat, and wouldn't use my fan.  This one would have stayed mostly out of sight.  



11. Stroller: We used a City Mini GT stroller, and it held up really well.  It had good shade and reclining for Evie, and was durable enough and comfortable enough for us.  A stroller caddy and a Mommy hook were key for taking along our bags and drinks!





12. Disney planner: our friend Jill, who is also a Disney planner, took care of booking our resort, getting fast passes, reserving the Magical Express, and so much more. It was great to have someone else paying attention to the details! 
*If you use our Amazon links, Amazon gives us credit that we use towards Evie's book fund, and we all know how much she loves books!

Thanks to all who followed our feed during our trip to Disney!  It was a great/magical time! Stay tuned for Mommy's blog post on sensory issues and feeding tubes at Disney! 





















The best $9.99 I ever spent

I used to think that the best way to spend $10 was to buy cider donuts fresh from the farm. But today, something else gave cider donuts a run for the money.

Evie's NOVA Chat, or augmentative communication device, decided to go kaput today. The sound worked, but the screen was dead.  I called Technical Support, but it was confirmed that the device would have to be sent to Texas to be repaired.  Insert crying emoji.

I didn't realize how big of a deal this was until Evie sat at the dinner table and started looking around for her NOVA Chat.  She wanted to tell me something, and couldn't. I tried to guess. This amounted to further frustration, which culminated in lots of yelling from Evie.  I told her to use her inside voice, but I was just as frustrated as she was when I couldn't understand what she needed.  Dinner took a very long time. She didn't even want a hug.

I went on the Saltillo website and printed the "low tech"version, which are PDF's of core words.  I showed her the pictures, and she really tried, but when she pressed a button that was supposed to trigger a new screen, she couldn't understand why the paper didn't change like a computer screen.
More frustrated roaring and yelling ensued. (Did I mention that people with Down Syndrome are NOT always happy?)

By the time dinner was over, we were both roaring at each other.  Even though we had just read "Dinos Don't Yell" this morning.

And then...I desperately googled Augmentative Communication apps.  There are a ton out there. And they all look different. If I didn't find the exact same setup, Evie would get frustrated in a different way.  The iPad version of Evie's vocal set, called "Word Power 60," is usually $300.00.  I didn't feel like spending that much money for a temporary fix, but they have a lite version for $9.99.   I thought $10 was worth it for 3 days of sanity, so I downloaded it.

Saltillo Touch Chat Lite


As soon as I showed Evie the screen on her iPad, it was like a different girl was in the room.  Evie instantly lit up, started saying all the things she had been wanting to say, and started exploring the different pictures that the iPad version had.  I am still stunned by the transformation as she regained her "voice" and was able to interact with me.



This lite version does not have the sound, but she is able to tell me what she wants to say as I read the screen.  THANK YOU, SALTILLO, for making a lite version so that my daughter and I don't go insane from frustration.   This further confirms that I prefer Apple products more than Androids, but that's for another blog post.  I am still wondering if I've created a monster by combining a source of entertainment with a source of communication, but I think the benefit outweighs the risk.

Being a special needs mom definitely stretches my brain and patience, but I still wouldn't trade her for anything.  She has a lot to offer, and just needs a voice.

If you haven't seen it yet, take a look at this movie that was made by MIT to be shown at the United Nations for World Down Syndrome Day on March 21, 2019.  Evie makes an appearance a couple times! Keep watching to hear her giggle! https://vimeo.com/325722356 (password: MIT).

That time when Marie Kondo gave us advice

I was reading Marie Kondo's Instagram site one day, and it asked people to comment on their home organization struggles.  I thought to myself "why not," and commented that I struggle with keeping my daughter's feeding tube and eating supplies organized on the kitchen counter.

Marie Kondo is known internationally for her philosophy of tidying and organizing. 

I was surprised to get a personal message from someone on her team, asking for my e-mail address so that they could better understand the situation.  I gave her my e-mail, and sent her a picture of the messy status of my kitchen counter. 

Oil, Miralax, calorie supplement, cups and bottles galore, cube trays, chewing devices...etc = no joy on my kitchen counter

She asked me a few clarifying questions, about whether the drying rack was for sterilized items, and other thoughtful questions, and then I got an e-mail that surprised me. 

The team had been a little stumped on what advice to send me, so they asked Marie Kondo herself!  And Marie Kondo sent us a message directly, to "Amy-san and Evie" and here's the advice she gave us (translated from Japanese via her team):

"I see...okay! So, we tend to focus on a specific spot in the kitchen where it seems like there’s a lot of stuff. The secret to this is to look around the other areas of the kitchen and see if there are items that don’t spark joy for you. Once you tackle the entire kitchen, there might be a spot that has extra space that you can use for the supplies that are on the counter.
There’s another way using boxes. With the perfect sized box, you can separate your items with each category (ex: bottles/plates/cups). Once the items find their “home”, you will realize that the kitchen seems to ‘spark joy’ for you. Amy and Evie, good luck with tidying!!"

I was tickled pink.  Marie Kondo herself!  

Weeks passed since receiving her advice--I just haven't had the time to do some organization.  But during a lunch break, I walked into the Muji store on Newbury Street, which I have been wanting to do for months.  After silently gushing in excitement over their pen selection, I saw shelves of storage boxes calling my name.  I was instantly inspired, bought a bunch of different sizes, and as soon as I got home, I set to work. 

I realized how many different cups and other feeding devices had collected on the counter--they were not giving any of us joy. So they went back to the basement. I then separated the cups into a container, bottle caps in another, and so on.  Putting things in the Muji boxes gave me joy. 

Here is the finished product.  I have less annoyance and more joy now when I look at the counter! Everything is where it should be!


Newly organized supplies

Closeup of box arrangement
Evie doesn't seem to understand how awesome this is on so many levels. I tried to tell her but she told me she wanted to play flashcards. Oh well.  Whatever gives her joy. 

When the School Nurse Calls...

You know you're a mom when your phone rings, and you recognize the number as the one for the school nurse, and promptly hold your breath, imagining the worst.  Usually they say right away "Evie's ok," and then continue on.  Today they didn't say that, and I was having a minor heart attack with every second that passed when someone who WASN'T the school nurse was calling me FOR the school nurse.  



Apparently there was a substitute nurse today (and for the next 2 weeks), and she was having trouble getting Evie's g-tube extension connected to her stomach port.  Somehow the whole g-tube button came out of her stomach, and the one other time this happened at school, the school nurse knew exactly how to get it back in and didn't even call me until it was back in. 

Not today. 

The person calling me said that she was calling for the nurse, and that Evie's g-tube button fell out, and would I like to come and put it in?  I said, well, I'm at work in Boston, and could go over in 40 minutes, but does the nurse know how to put the button back in?  The answer was no.  

And so I told the nurse I would walk her through it if she was game.  She was, and I told her how to prep for the insertion of a new g-tube button. 

For those who are interested, the kit comes with a small syringe.  After inflating the balloon to make sure there are no leaks, you draw up 2.5 mm (or whatever the kit says for your size) of bottled water into the syringe.  Then you put sterile lube on the tip of the deflated balloon for smooth insertion. 

A pic from one of my earliest posts about learning to g-tube.

Once she was prepped, I wished her luck, and stayed on speakerphone.  I heard them hold Evie down as I instructed, and then promptly heard Evie hollering and crying.  The nurse inserted the button successfully, but then couldn't get water to flush through the tube as Evie was straining and crying.  She wasn't in pain--she was just angry at being held down.   I gave the nurse permission to skip the water flush this morning and just to give her plenty of chances to sip water from a cup.  Evie got lots of hugs from her 1:1 aide after that, and calmed down.  

Crisis averted, I went back in the conference room and tried to catch my breath as I jumped back into my meeting at work.  

Hours later, I am wondering to myself if I will need to start a campaign for all of the school nurses to have g-tube training.  Tomorrow, I'm going to be marching to the substitute nurse's office to train her and train Evie's 1:1 to do g-tube for her.  Knowledge is power, and in this case, knowledge saves a trip to the ER and a possible surgery to re-insert a g-tube button if the button is out too long.  

I salute the nurses who taught me how to do this myself.  I salute all the caregivers out there who have become medical experts because they care for someone so deeply that they learn all sorts of unheard of skills in the common population.  I salute all the people in our lives (grandparents, friends,  teachers, babysitters) who haven't been afraid to learn how to handle Evie's g-tube, and have jumped in and learned how to help.  

This may prompt someone to ask "When is Evie going to be off the feeding tube?"  Well, it's a very slow journey, which can be slowed down if Evie feels like we are forcing her to eat, but she is much closer!  Today in feeding therapy, she put a puff all the way in her mouth for the first time!  She moved it around her mouth and then spit it out, but she didn't gag or cry, which is HUGE.  Thanks for cheering us on!


Evie the Wolverine and Glasses

How many optometrists does it take to find Evie's glasses prescription?  Today I found out the answer is 3.

Over the last several months, I thought I noticed Evie squinting.  I at first brushed it off because her last retinoscopy (the process of determining one's glasses prescription by watching the direction of the light reflex on the retina) had shown a mild myopic/near-sighted prescription.  But I got to thinking that it had been a couple years since this anesthetized exam (aka Exam Under Anesthesia (EUA)), and decided to take her to a pediatric ophthalmologist known for her touch with kids with special needs.

It was a battle zone.  We tried it the nice way, but Evie kept saying Bye Bye and trying to open the exam room door.  I held Evie down while my husband kept her legs from flailing, and the ophthalmologist pried her tight lids open while trying to take 1-second swipes with her retinoscope to see the retinal reflex.  After we were all a sweaty mess, she declared that Evie was a -6.75 prescription and definitely needed glasses.  As a mom and an optometrist, this number shocked me.

I talked it over with colleagues, I went back and forth about whether to question the findings.  In dealing with my own child, I couldn't make the decision because I was too emotional about it.

I decided to try myself, and dilated her eyes before bedtime.   I tried while she watched her iPad, and confirmed more myopia. However, she would not cooperate enough for me to get a great reading.  So I waited for her to fall asleep, and crept into her bedroom.  Friends, doing retinoscopy through crib slats is not recommended.  I had to contort my hands in positions that just weren't natural.  I again saw more myopia than I wanted, but could not get her eyelids pried open enough to hold both my scope and the trial lens at the same time, while contorting my body.

Finally, I made an appointment with an optometrist known for her work with kids with special needs, and who I wanted to meet anyway.  Just one more person giving it a shot would at least help me feel better about what I was going to prescribe.   This time, I dilated her eyes before the appointment (don't try this if you're not a licensed professional or without the permission of your doctor), which turned out to be key. There were way less tears, so that the drops could actually work and give us an accurate reading.  My dear daughter is ever so suspicious of instruments held near her face, so I used the flashlight on my iPhone to check if her pupils were dilated. Phone near my face, Mommy?  Sure, no problem! I love phones!

Enter in the pediatric optometrist.  She gave it a shot with just me holding Evie down, and quickly realized that my warnings were merited, and asked an assistant to help hold her lids open.  This assistant quickly found that Evie's lids like to flip very easily.  So the optometrist then went to get the other pediatric optometrist, who happens to be a friend of mine, and she pried open Evie's lids while the other optometrist did the retinoscopy, and I had one leg thrown over Evie's legs, while holding her arms against her chest, and holding her head down with my chin. The assistant helped me to sing Twinkle Twinkle Little Star over Evie's screaming.  It was glorious.

Of course, Evie got loose every so often, because we were sweaty and became more slippery.  We hadn't gotten around to cutting her nails, so my little Wolverine got loose and would swipe at my arms, chest, neck, and hands in her desperate attempts.  I am the walking wounded.

But we got a prescription, and it's the best yet!   It makes the most sense, and it's the most precise (she had some astigmatism).  For the eye nerds reading, it was a -3.00 -1.50 x180 and -4.00 sph.  Evie yelled Bye Bye very loudly when we left.

You may be wondering about what frames Evie will be getting.  Out of Miraflex, Nanovista, Dilli Dalli, and Tomato Glasses, I like the look and weight of the Tomato Glasses the most.  They are in my opinion the cutest, and very flexible with an adjustable nose bridge and replaceable parts in each kit.  If she destroys them, then I'll probably try Nanovista.  I managed to try on some frames with 5 seconds of success in having her keep them on.  Pray for me.  :)
You want me to wear these things all the time??
The moral of the story is:
1) Always trust your gut about your child's vision, and get another opinion if needed.
2) Sometimes it takes some creativity to get better results for our kids.  You can ask your eye care professional if you can bring the child to the visit dilated already, if you have similar levels of uncooperation as we do!  Asking them to observe the child in the waiting room first before bringing them into the exam room can take advantage of a lower level of anxiety if the child is scared of doctors.
3) It never hurts to get your eyes checked at any age!  Kids with DS are checked around 6 months old to look for an eye turn or high glasses prescription that could hinder their development.
4) Listen to Laurie Berkner's "These Are My Glasses" song over and over again to help your child think that glasses are fun.  It's SORT OF working for Evie!


Evie's and Amy's favorite things--Prime Day edition

Hi Evie fans!  I see some favorite things being featured on Amazon Prime Day (July 15-16), so I thought I'd share them. I'll keep adding as deals get released the next couple days!



EVIE's RECS:
Tegu Blocks: Evie got these when she was quite young, and as she ages, she appreciates the Tegu Blocks more and more.  They have a satisfying magnetic click, come in different shapes and sizes and colors, and they build fine motor skills!




Anything Peppa.  Enough said.


This isn't exactly on super sale, but we love it so much, that I wanted to share it anyway. Peppa's house has lights and sounds as well. You can turn off the sounds once you get annoyed (it took me about a week to get annoyed).



I just bought Connect 4 for Evie today because she has shown so much interest in this game after watching Blippi play it on Youtube.  If you want to be the most awesome house there is, you can buy the lawn version of Connect 4 and we will spend all day with you!
The regular version is on sale for $8.39!


Lawn version:


Evie loves her dot markers!  She's still not great at exerting enough pressure on the markers to make too much of a mark, but with dot markers, she's able to make more of a statement on paper.




20% off of these supportive toddler chairs!  They remind me of a Rifton chair without the saddle part.




Evie recommends all play kitchens!  If I had seen this, I might have gotten it instead of our IKEA kitchen! Only $47.70 right now!






AMY'S RECS:

 I bought these reusable snack bags for much more at Anthropologie.  I've been using my pink snack bag for a couple weeks now, and I really enjoy them.  They are dishwasher and microwave safe too! The Clear ones are still available last time I checked!




This home air purifier is $49.49 on sale!   I have two of these, and am tempted to get another just for the price.  It has made a difference in Evie waking up with a sniffly nose. During allergy season (which has been especially bad in Boston), this has been well worth it.



I wouldn't be me if I didn't post about the Instant Pot.  3 years later, I still make perfect corn on the cob on a 2- minute setting, and my chicken curry always turns out great.  I highly recommend this for busy moms! Usually $129.95, marked down to $69.99, and ringing up at only $55.59 right now!



A really great option for an extra TV you don't want to buy cable for. $14.99 on sale!



And the gadget we have in many rooms of the house--the Echo dot.  Evie loves to listen to music, and we love knowing the weather. You can even use it as an intercom.   Usually $50, then marked down to $24.99, now ringing up at only $20!



Happy shopping, everyone!

Moving On Up

At Evie's graduation ceremony from her pre-K class today (she's going to the older pre-K class in the fall), she covered her eyes.  BUT she then got up and walked over to the teacher when her name was called, and then snuck a peek to see where I was, and then walked to me with her head down and threw herself in my arms.  She WALKED to me and knew what she was supposed to do!  I call that a victory!  3 months ago, she may not have done either of those things. 


Evie was prepped by her teachers that this was the last day of school. She was not a happy girl when we pulled out of the parking lot and waved goodbye to the school building.  We are so thankful that she loves school that much.  Why does she love school so much?  Because she gets to do things like play dress up!  I am now scrambling to collect dress up necklaces, dresses, scarves, gloves, etc to accommodate her love for girly accessories!  We went to IKEA this weekend and bought a mirror to put up in her room so that she can play dress up! 


Another way that Evie is growing up is in her communication skills.  Today, I asked her if she wanted to go to the library, and she went to her NOVA Chat communication device and told me "I don't want to."  This was the first time she had expressed herself so fully, instead of making a sound of disgust.  I still wait for the day that I can have full conversations with my daughter, but this is an awesome start.  I am told by the SLP's in her life that she is a superstar with the NOVA Chat, and I am super proud of my girl.

Peer modeling has been awesome for Evie.  She has even started to ask to use the potty, and has done so successfully in the last week of school.  Today, her aide had a chance to say some words in the ceremony, and she beautifully said that her classmates have been so supportive of Evie, and she believes that Evie's classmates have benefited by being friends with Evie as well.  The other parents nodded their heads in agreement, and this mama's heart just got so full.  I am so thankful.  I am also so sad to leave her wonderful teaching team--they have fallen in love with Evie.  I invited them to our home to give her manicures, because she allowed them to do her hair, apply nail polish, and draw a spider tattoo on her arm.  I don't recognize this kid!

Next fall, we get to have the same wonderful aide, and we were able to meet her new teacher on the way out of the building today.  We felt so well taken care of.

What's in store for this newly-graduated 4-year-old?  A lot of trips to the library and the park, and hopefully some beach trips with her grandparents, and then off to summer school (Extended Summer program) for a month so that she doesn't regress too much!  Wishing you all a fabulous start to your summer!

PS Keep an eye out for more info about joining us on this year's Buddy Walk in October!!  Evie's other favorite musician is going to be there! AAAAAAHHH!


What I Want For Mother's Day

Dear Daughter:

I guess the easy answer for saying what I want for Mother’s Day is that I would love a big fat nap. But beyond that, from the depths of my heart, what I want for Mother’s Day and any other day, is knowing that I have helped you be your best self. I want to know that you are enjoying life to the fullest, and showing this world that you are so capable, even if you have an extra copy of a chromosome.




It doesn’t bother me that you took a while longer to learn to walk. I am mostly proud of the ways that you have learned to enjoy the small things, like making a duck out of Play-Doh, and playing flashcards with mommy. I want you to know that although the world says that you can’t do many things, that the smaller microcosm of the community around you is cheering for you so hard. 

When I post things on social media, our friends notice the little things about you like how you roll up your sleeves before you set yourself to a task, or how you fold your little hands in your lap and giggle when you are so proud of yourself. I am beyond thankful for people who believe in what you can do, and who teach their children to include you and see all that you have to offer.  The fact that your whole classroom clapped for you when you took successive steps all by yourself is testament to what the world can be if we all cheered for each other more often. 







You are definitely enjoying life right now as you sort your plastic vegetables by color into their respective buckets. You are yelling "pepper" and "apple," and looking so pleased with yourself!  I just high fived you after you sorted them all for the second time. You are on your third time now of sorting the vegetables, and I am all for that, because you are capable. I love you my daughter, and I am proud to be your mama. 

Love, 

Your Proud Mama




The waiting makes it sweeter...

I have to admit that I love fast results and efficient progress.  Evie has challenged that part of me, but has taught me that the waiting makes the victory all the more sweet.

While her peers (even the ones with Down Syndrome) went on to walk and run, Evie trucked along in her walker.  I have learned that I need to remember that Evie goes on her own timeline and she will get there, but 3 years of waiting was hard!

But she finally reached this huge milestone, and I am so proud!  And not only were her parents cheering her on, her classmates gleefully counted each step that she took, and her friends and family from afar celebrated with us.

Here's a quick clip for you to share the excitement with us:


I can't wait to give away the wheelchair!

Just a couple weeks later, she now walks confidently down the hallway to the couch at home, and is attacking the stairs with gusto.  I feel happy every time I see her walk.  She wears Ikiki shoes indoors to allow her to wear her orthotics whenever she's walking.  They squeak every time she takes a step.  The squeaking brings joy to my heart.



We highly recommend the Ikiki shoes if you're looking for some sturdy shoes that fit SMO's!


NOVA Chat Hacks (i.e. Evie's talking device hacks)

For those of you who don't already know, Evie has an augmentative communication device called a NOVA Chat.  While Evie's oral motor skills are getting stronger, she still is not able to express herself verbally, and needs a way to communicate, especially in the school setting with people who do not know her sign language motions.

When we were first presented with our options at Boston Children's Hospital in the augmentative communication clinic, we had to decide between the iPad and the NOVA Chat.  We chose the NOVA chat because Evie is already way too attached to the iPad and we want her to see the NOVA Chat as a communication device and not a potential Youtube playing device.  But the iPad is a perfectly good choice for other kids!

Evie's preschool team has fully embraced the NOVA Chat.  We attended a half day training with a Saltillo rep, which was helpful, but the training was oriented more towards the therapist than the parents.

The NOVA Chat has a home page built of various core words that trigger other menus of related words.  For instance, if Evie wants to say "Want eat breakfast,"  she can hit want--> eat --> breakfast. When she taps "eat," another page of food options pops up.  She loves naming fruits and vegetables.  Her favorite is "Chinese cabbage."  As you can see below, if you click on the Chinese food square, you could potentially order Chinese food on the NOVA Chat!


Lots of Chinese food options on the NOVA Chat! I'd like egg drop soup, please!  
 In all seriousness, life with a NOVA Chat takes some adjustment.  We are supposed to have the device accessible to Evie at all times, but I will admit that we don't always have it there, because we know all of her signs, and she expresses herself to us with sign language.  However, we have it at the meal table and when we are starting a new activity so that Evie can tell us if she wants to do something else.  She is VERY good at saying "watch iPad."

Some hacks that I've discovered as we start this journey with augmentative communication are as follows:


1. A carrying case and a keyguard:  I got this case on Amazon for our NOVA Chat 10.  We originally started with NOVA Chat 8, which is smaller, but Evie had a lot of trouble with accuracy in tapping the squares.  So our trial changed to a NOVA Chat 10 with a 60-location keyboard.  We liked the 60-location setting much better than the 30-location because we didn't have to change pages as often when trying to say something. 

2. Name labels: I am terrified of losing this device, since the insurance is paying for it.  The first order of business was to use our NameBubbles tags on the device and the case so that her name is on them. I use these same labels on her bottles and wheelchair and backpack. 

3. Tile locator:  Tiles were on sale for the holidays, so I thought I'd try them out.  I am in love.  I have already used the locator to find my phone several times.  All you have to do is download the app, press some buttons to make the phone talk with the tile, and you are ready to lose things!   

4.  NOVA Chat strap: I would say that this strap has been annoying and helpful at the same time.  I would still recommend using it for school use, because when your hands are full with a walker, backpack, and a 28-pound 4 year old, a strap is very useful. 

5. Adaptive reading: As we help Evie navigate the NOVA Chat and see it as a way to express herself, our speech therapist forwarded me a Saltillo resource, which is NOVA Chat pictures that can be stuck on the pages of well-known children's books, so that Evie can read along as we go.  We use Glue Dots to stick these on once we print them out.  The picture below is for "If You Give A Mouse A Cookie," by Laura Numeroff.  Whomever gave Evie the whole set for her first birthday, you knew what you were doing! <3



This book is coming up in Feb in the preschool curriculum, and Evie will be ready!
An example of how we stuck the picture cards in her book.
6. Household activities:  The trainer and speech therapist also encouraged us to print common daily activities and stick them around the house.  Here's a pic of what is in the bathroom for Evie. 
These pictures show how to say clean, dirty, wet, wash, and dry.  
Evie is pretty good about getting up on her IKEA stool and turning on the faucet by herself, rubbing her hands together once she has soap, rinsing, turning off the water, and then knows how to dry her hands while she leans against my legs. I've been slightly stepping back to see if she notices that she can stand on her own.  So far, I've had a 50/50 success rate with that. 

Those are our NOVA Chat hacks!  I'd love to hear other people's hacks too!  

For the parents reading this because they are starting this journey, here's a quick summary of the timeline we followed in acquiring a NOVA Chat:
1. Referral from BCH Augmentative Communication SLP (speech therapist).
2. Fill out a gazillion forms for Saltillo and the funding company, PRC (forms provided by the therapist at the hospital). 
3. Wait for PRC to let us know that insurance has cleared the rental. 
4.  Training scheduled with the school team and parents. 
5. Start trial period, adjust to taking NOVA Chat everywhere. Record instances of how Evie is using the device over the next month (just doing a few days here and there over a progression seems to be ok). 
6. Follow up visit with SLP at the hospital to document progress. 
6. At end of trial period, SLP writes a report from hospital and speech therapist from school writes report.  Parents provide the usage log.  This goes to the funding company (PRC) and then is cleared with Saltillo (or whatever company you use) and we get to keep the device! 

Some notes about our experience...we started with a NOVA Chat 8 and no key guard, as well as a 30-location setup (i.e. 30 words on the screen at a time).  Evie's had trouble finding the very small words, and her fingers kept slipping down to the word below her target.  So we switched to a NOVA Chat 10 and a 60-location key guard during her trial, and this worked much better (although is a bit harder to carry around everywhere).   

I hope this helps someone in their journey, as it was a bit confusing at first.  Happy Talking! 


Evie's food world just changed

For those of you getting excited by my title, no, she is not completely eating by mouth yet.  But she is completely on real food!

Evie just switched this past month to a different "formula" because Pediasure Peptide 1.5 density seemed to be causing her to lose weight.  She had been gaining on 1.0 density, but we were trying to help her to cut down on the amount of formula needed to maintain weight and still be interested in food.  Once she started losing weight, the GI doctor theorized that she was having absorption problems with the Pediasure, and suggested that we just switch her to Real Food Blends or Nourish. Both of these blends are real, blenderized food, and I was a big fan of getting her off of formula.  Not only would it be healthier in general, but she might become more regular as well (sorry, TMI, but not sorry).

Back in our Pediasure days, we used one can a day and poured some in through the g-tube throughout the day, as you would any liquid with the consistency of milk.  In switching to Real Food Blends, this got a little trickier because it's actual food that is more of a pulpy consistency.  To illustrate, imagine blending up beef, potatoes, and spinach and then making it go smoothly through a plastic tube. Not easy.

After some experimentation, here's my current setup:

One major thing I learned was that coconut milk cans have huge chunks of good fat at the top. I initially thought nothing of pouring out the liquid and leaving the chunks, and then realized that I was keeping about 30 of the 130 calories in this Trader Joe's can!  So I borrowed a hand immersion blender from a friend, and it made so much of a difference.  I now pour in the whole packet of RFB, pour in coconut milk to 12 oz on the blender container, and then top it off with water if needed.  Then I stick the hand blender inside the container, blend for a minute, and it's ready to use for the whole day! 



If you're not really sure about Real Food Blends, you can ask your Nutritionist for some samples, or even buy them off Amazon (which is what we did while waiting for insurance to approve).


Evie is still eating by mouth!  For a month, she didn't gain any weight on the new RFB.  The game changer this week was that we gave her 3 cubes (~6 oz) of blended food by mouth instead of the usual 2 (~4 oz),  and she ate it all.  Add the coconut milk with all the fat, and she gained a whole POUND this last week!  I almost fell over in shock.  It turns out her favorite dinner is chicken curry.  Who would have known.

Evie's blended French Toast being made
Evie smushing blueberries as part of her feeding therapy


Hope you are all having a fantastic food day like Evie!

It's a Jolly Holiday with Evie


Gearing up for the holidays was a whirlwind.  The week after Evie's birthday party, her class did some holiday activities, one of which was role-playing Santa and his reindeer, and climbing down the chimney (aka tunnel)!  I absolutely loved the picture they sent me of Evie, aka Santa, being pulled by 2 reindeer classmates.  This is what inclusion is!  Evie was fully included in the activity, and she was given support so she could fully participate!  I hope she understood how lucky she was to be Santa.  At least she kept the hat on. 



We went to visit my parents in CA over the break, and it was nice to have warmer weather and a change of scenery.  Evie was an absolute angel on the plane going to CA and coming back.  I am so thankful for the iPad...I mean... for my angel of a daughter.

Some fun family activities we found in the Riverside area were the Mission Inn, which was decorated for the holidays, Mt. Rubidoux for a quick hike and a Popeyes' picnic lunch afterwards, and the Pennypickle's Workshop Children's Museum in Temecula. 

Enjoying the festive environment at Mission Inn!


Evie loved the toddler playground at Mt. Rubidoux!

Pennypickle's Workshop is a cute little museum full of hands-on experiences in science for children of all ages. Evie liked the kitchen the most! 

Evie enjoyed playing with grandpa and grandma, and Mommy and Daddy got to go out sometimes on dates.  Our longest date ever was for most of the day at a friend's wedding in L.A.  I didn't really know what to do with myself. I felt like I should be feeding Evie or holding my hands over her ears when the applause was too loud.  It was a nice break!

This trip was a little different in terms of Evie's feeding tube. We have switched to a different formula, and there are little considerations that I needed to prep for.  More on that in my next post!

Back to real life for a full week tomorrow!  Happy New Year, everyone!

Evie's First Trip to Disney World

Hi everyone!  We just got back from my first trip to Disney World!  My mommy didn't know if I'd like it because I get scared of lar...