Evie's 4th surgery...and tips!

Hi friends, it has been awhile. Since we last wrote, Evie had a few minor procedures that we had been "collecting" in order to justify putting her under anesthesia.

As soon as it was evident that we would be scheduling surgery, the part of my brain that stores away medical info for Evie kicked in, and was ready to unleash the many departments that wanted "in" on an anesthetized Evie, because "awake Evie" is not very cooperative for medical visits (and none of us could blame her!).

Evie's collection of minor procedures included:
1.  Strabismus surgery to correct her eye turn (again).  For our eye nerd friends, she had bilateral muscle resection of her lateral recti and also her inferior oblique in the right eye, as well as Exam Under Anesthesia (EUA) and DCR.
2.  Punctal duct clearing/expanding--Evie's punctal duct anatomy is quite interesting and takes her tears on a roller coaster that goes up and then down, which means that her tears just come back out and run down her face, and then people ask me if she's sad.
3.  Eye Exam under anesthesia (EUA): to get a proper assessment of her glasses prescription, they will do objective testing of the retinal reflex and check her retina.  Let's just say that Evie has inherited our myopic genes, and needs some myopia control.
4.  Cardiology: finally got an echocardiogram, because girlfriend does not like stickers that she didn't ask for.
5. Cerumen cleanout: otherwise known as cleaning out her earwax.  She gets in these bad cycles of failing low tones on hearing tests, cleaning out her earwax, and then passing the hearing test.
6.  Ear examination--they will be actually able to see inside her ears!
7.  G-tube surgery: There has been a lot of excess granulation tissue building up around her feeding tube port.  The surgeon cleared off some of this tissue, because it had gotten so high that we had to go up a size in her g-tube button.

It is apparently a small miracle that all 4 specialists were available on a certain date, so we only had a 2-week warning that this was all happening soon.  Looking back, we beat the COVID shutdown by a week, and I am so grateful.

I wanted to share some of the tips we learned this time around, in case it helps someone else.

1.  Social Stories: Last time Evie had these procedures, she was 2 years old and easily forgot how traumatic it was for her.  This time, she is 5 and is going to be SO angry when she wakes up from anesthesia.  I read the scheduler's instructions, which listed an e-mail address for Child Life services.  I e-mailed Child Life and received a link for the Day Surgery social story, which I will likely edit a bit and then print out to read with Evie 2-3 days before the big day.  Hopefully this will help her to understand what is happening when she goes to the hospital.

We practiced on a doll and read Doctor Maisy to help her prep for pre-op, but in the end she still screamed her head off during vital signs. 

2.  Communication Device:  I wanted to empower Evie to be able to communicate in the time that she is waking up and they are just alerting us that we can go to see her in the PACU.  I asked Child Life if we could arrange for her to have her Nova Chat in the recovery room, and they said that they would advocate for us to do that. However, while Child Life was so nice and brought her toys in the pre-op and post-op areas, Evie really didn't want anything except Mama, so in the end she didn't need her Nova Chat.

3.  Nail cutting and hair trimming:  No joke, if your child with special needs is ornery when you try to cut their hair or trim their nails, you can ask the surgeon if they are willing. The ophthalmologist brought this up with us and said it was no biggie if I wanted a nail trim that day for Evie. I got a big kick out of this, but for some people it could be a lifesaver.

4. Waiting in Pre-Op: Parents, don't think that your child will be taken at a predictable time before their surgery time.  Our arrival time was 11:45 am, and surgery time was 1:15. Evie got taken in at 2:15 pm.  But of course I had forgotten that things run behind, and had waited to eat lunch. I ended up sneaking a candy in the bathroom so I wouldn't pass out from low blood sugar.  I was trying to have solidarity with all the fasting children around me, but man, I just couldn't do it. Evie did better than I did and fasted longer than I did.

5.  Recovery: This is the hardest part.  Evie was so uncomfortable.  She wanted to throw up when we got home, but there was nothing to throw up. We had to try small amounts of Pedialyte gradually so she could keep it down.  It just broke my heart to see her so uncomfortable and sad. It was a bit like having a newborn again, with staying up all night and rocking her.   Thank God she felt much better the next day.

Here we are, 3 weeks out after the surgery. Evie's eye turn is noticeably improved, although not 100%.  She does still have watery eyes, but that may be from all the screen time she is getting during this COVID-work from home-homeschooling phase of our lives.  All in all, she was a trooper, and we are so thankful for the care we were able to receive in person, just in the nick of time.

If you have read this whole thing, you are a true Evie fan or a fellow parent of a medical needs warrior.  Much love to you.

Evie turns 5!

It's funny how Evie turning 5 just crept up on me, without too much fanfare.  Turning 3 was a big deal because she graduated from Early Intervention support, and turning 4 was heralded with a big birthday party.  This year, I wanted to give Evie a good mix of fun and celebration, but with consideration for her fear of large groups.  We ended up picking one of Evie's favorite indoor playgrounds and inviting close "framily."  It was overall a huge hit, except for when we all attempted to sing Jingle Bells instead of Happy Birthday (she hates happy birthday), and she freaked out.  Turns out she just doesn't want attention all on her.  Mama gets it now, Evie.

This past year was full of firsts:
1.  Walking independently (goodbye, walker!)
2.  Putting solid foods in her mouth without gagging or crying
3. Licking an ice cream cone voluntarily and repeatedly
4. Saying more words verbally
5. Graduating to bigger ankle braces
6. Playing dress up and interacting more with her peers

7. Getting glasses (and wearing them!)
8. Starting to notice bathroom routines
9.   Reading books to herself

10.   Reading sight words
11. Using full sentences on her NOVA chat device
12.  First time to Disney World and Disneyland
13.  And hopefully today...wish us luck...graduating to a toddler bed!

Evie celebrated her birthday on an airplane to California for Christmas, and she traveled so well. She even walked herself down the jetway.  Our little girl is growing up!

Wishing everyone a wonderful 2020, full of more firsts!

Telling other kids about disabilities—my conversation with a 6 year old

I had an unexpected opportunity to have a deep conversation with a 6 year old a few weeks ago.  She came in while I was feeding Evie lunch in a quiet room away from a party.  The chatty girl first asked what Evie was watching, and then did a double take when Evie babbled something in response to the snow she was watching.

“Why doesn’t she talk,” she asked. I braced myself and answered that her mouth muscles are not very strong, and she is still learning how to move them to talk.  

“Oh. I’m sad that Evie can’t talk.”  My mama heart felt grateful that she felt the same emotions as I do for Evie each day.  I thanked her for wanting good things for Evie, and assured her (and myself) that one day Evie will speak only a way that others can understand. 

I asked Evie something where she answered in the affirmative with sign language.  I then told the girl that this is what Evie signed in order to say “yes.”  Our new little friend was ecstatic when Evie signed “yes” again and she informed me that Evie meant “yes,” as if she knew it all along. 

“I wish she could play with me,” she said.  I answered that Evie could play with her, and that she liked to play kitchen. She asked if she could bring out the kitchen toys for Evie, and I said sure!

She lugged a big plastic box of kitchen toys over, and when she invited Evie to come play, Evie paused her show on her iPad, put it down, and went to play.  They played cooperatively, mainly the girl speaking to me while I encouraged Evie to explore the kitchen toys. But it was great to see them side by side.  

The girl asked how other people know what Evie is saying, and I introduced her to the Touch Chat app on the iPad. I told Evie to say something to her on the device, and Evie said “goodbye.” 😂 But the girl was fascinated and announced, “I really like this! Why doesn’t Evie use it on Sundays in Sunday Scbool?” I told her that the other kids see it as a toy, and it doesn’t get used as much unless the teacher doesn’t understand what Evie is saying. She pondered this, and I could hear the wheels turning in her head. “Well, I think this is great,” she stated.

This conversation had me thinking. Evie deserves to have a voice in Sunday School too, but the device shouldn't be a distraction.  We will need to help the teachers to describe the device to the other kids as something that helps Evie talk, and that there would be a no-hands policy.  Inclusion means helping everyone to participate, and my job as a parent is to empower others to help Evie to be fully at the table, voice and all.  I am so thankful for the teachers who volunteer their Sunday mornings, and especially Evie’s 1:1 aide who does it out of love for Evie. She is our partner in helping Evie to participate, and I can’t wait to brainstorm with her. 

Leave it to a 6 year old to share some wisdom with me.  I can't wait to see what she becomes when she grows up!

Sensory Issues and Tube Feeding at Disney World

When we first decided to go to Disney, I started researching how it is having a feeding tube at Disney, and how kids with sensory issues can still enjoy the "most magical place on earth."

I found information here and there on various forums, by googling "which resort has freezers," and "ice packs at Disney," and "sensory issues at Disney."   I wanted to share what I learned in hopes that our experiences can help someone else.

The technical 411 for fellow tubie parents: Evie is 4 years old, has a g-tube, but eats 3 meals a day of blended foods by mouth. She gets supplemental Real Food Blends 3 times a day. We are at about 30% wean.  We had gone to 50% wean, but she lost too much weight.

The technical 411 for fellow sensory parents: Evie is terrified in a closed room environment with a lot of people.  She hates it when people speak on a microphone, and has almost physical pain when people start clapping and cheering.   However, she does fine in a mall or a park because they are not as enclosed.

For those of you for whom sensory issues are new, the body basically has a hypersensitive or hyposensitive response to a certain stimulus such as noise or light.  Here's a good article that quickly explains it: https://www.understood.org/en/learning-thinking-differences/child-learning-disabilities/sensory-processing-issues/how-to-explain-sensory-processing-issues-to-friends-and-family

Here are our tips broken down by topic:


1. Disney is very accommodating and will try to help.  Don't be afraid to ask for what you need. My #1 worry was how I was going to keep Evie's blended food cubes frozen if there wasn't a freezer in the Disney resort hotel room.  I asked the Port Orleans staff for an extra fridge to turn to freezer level, and a microwave in our room (this isn't standard).  They were able to make the microwave happen, but the fridge wouldn't be able to get up to freezer level, so they told us to bring our frozen food cubes and ice packs to the bellhop, with access 24/7 whenever we needed it.  This was probably the most inconvenient part, because the bellhop was across a bridge and down the walkway, and I felt I should tip each bellhop when they went to the freezer for us.  But still, we made it work.

2. Choosing a hotel: if you want the Disney experience, but can't do what we did in #1, I would say to stay at a DVC in a suite, or stay off-site in a suite.  Having stayed at a suite (Homewood Suites) for a conference before we moved to Port Orleans, I really missed the "suite life."  I had a full refrigerator/freezer and counter space to assemble Evie's food, and it was very convenient.  The suites at Art of Animation and Fort Wilderness Lodge have fridges, but they were pretty pricey. However, the ambiance and the great customer service were pretty great at Disney.

3.  Each time when we go on a trip, I make a list of how many blended cubes we need to bring.  For a 5 day trip, the list would look something like this:

Travel Day 1:
Lunch for plane
PM: Chicken Curry (CC)

Day 2:
AM: French Toast (FT)
Lunch: Chicken, Rice, Peas (CRP)
PM: Goulash (G)
Formula x 3 (60 ml + 60 ml + 120 ml)

Day 3:
AM: Pumpkin pancakes (PP)
Lunch: Chicken Tikka Masala (CTM)
Formula x 3

Day 4:
Lunch: G
Dinner: CC
Formula x 3

Day 5:
Lunch: CRP
Dinner:  G on plane
Formula x 3

I then have a ziploc bag for each type of meal, and count "3 2 oz cubes per meal x # of days" needed into each bag.   I usually microwave the cubes in a bowl for 1 minute and then add Noosa yogurt (about 1 1/2 oz) and mix them together. Evie's favorite flavor Noosa yogurt is pumpkin.

4.  Of course, the first day of Disney, I forgot to retrieve the ice packs from the bell hop before we got on the bus to Epcot!  Our Disney planner had told us about Baby Centers, so we went there hoping to use their fridge. We found out that they did not have a fridge for us either.  They just have changing tables and they sell various baby supplies. They sent us to First Aid, who gladly gave us plastic bags filled with ice, and this did the job.  They gave us extra plastic bags too, so we could refill the bags with ice at other quick service food locations.

5. Water flushes all the time!  In 90+ degree weather, we had to remember that we needed to give more water flushes than her usual routine.  The heat made her quite lethargic, and she often refused sips of water.

6. We use the stroller bag from Thirty-One gifts.  It travels well and keeps Evie's food pretty cold, depending on what kind of ice pack we use.  They don't always sell it, but when it comes up, it's worth grabbing one.

For the plane, I loaded ice packs into this guy:
They kept our blended food cold very nicely in our travels, from leaving our house at 9 am to arriving to a freezer at 5 pm.

So is it doable for a tubie?  Definitely!  We just gave food in quiet places and then went about our business having fun.  Food storage can take some extra planning, but definitely feasible.  I did read that Disney chefs are wonderful at blending up food as needed if special requests are made, but we did not get to test that.

1.  Rides: Evie does not like dark and noisy places.  We tried the Frozen ride, the Pooh ride, the Nemo ride, and even It's A Small World. I would say that she tolerated them, but hid her face most of the time, unless a character she recognized came out and she peeked with one eye open.  The Disability Access (DAS) pass really helped us avoid lines in dark and noisy areas, but I would say that she is not ready for rides.   Perhaps with headphones, but her sensory issues mean she doesn't like things on her head either!

This ride was not as dark as the Frozen ride, but quite jerky at times. 

2.  Shows:  If the child loves certain songs, I think this is still worth trying.  When we went in, I told the cast member acting as an usher that my child may not like the show and we needed an easy exit. They showed us where to sit so that we could exit easily. Luckily, Evie enjoyed "Let It Go" and was able to sit for the entire show on my lap.
The Frozen live show was pretty cute, and we sat near the exit just in case, but Evie enjoyed listening to the music.

3.  Evie did ok if she was in her stroller going through a crowd.  I did bring headphones, but it just seemed too hot to wear these when it was so hot already.

4.  Disability Access Pass (DAS):  When you first get through the entrance, there is a Guest Relations building somewhere in the vicinity.  On the first day of your Disney trip, if you go to the Guest Relations team, you can ask for a Disability Access pass.  They do not want to know diagnosis or need to see a doctors' note.  They want to know what kind of accommodations the person needs to be able to enjoy Disney.  I told them that Evie is afraid of large crowds and noisy environments.  The cast member immediately did some stuff on his iPad and scanned our Magic Bands, and that was it.  Looking back, I might have also said that she needed her stroller as a refuge when standing in line. This would have gotten us a pink tag for our stroller so that we could take it into buildings, unlike everyone else who needed to use stroller parking.  But we did ok without the pink tag.
Resources to read: Undercover Tourist gives a great overview of how to get a DAS. 
Disability Resource in general: Great blog by Undercover Tourist

5. Places of Refuge:  In such a busy park, it was hard to find places for Evie to take a nap for 2 hours. At Epcot, we spent 2 hours in the Baby Care Center, but later found the food court at The Land, which would have been much more comfortable for the whole family.  At Magic Kingdom, we went after her nap, so didn't need a place to camp, but knowing that the Baby Care Center was there was helpful.  Our friend suggested Pinocchio's Village Haus, from which you can see the It's A Small World Boats go by.  Next time...   At Hollywood Studios, we found the ABC Commissary (also suggested by our famous dad blogger friend Uncle Joe), and spent 2 very comfortable hours there.
Orlandovacation.com offers a short list of various quieter places in each park.  There is an even longer list here: https://www.keytotheworldtravel.com/sensory-friendly-spaces-at-walt-disney-world/. We were ok with white noise at cafeterias, but others may need actually quiet spots to decompress.

6. Disney does a great job of helping people with autism and cognitive disabilities. They have a summary of their services here: https://disneyworld.disney.go.com/guest-services/cognitive-disabilities-services/.  Their official brochure for guests with cognitive disabilities is here: https://secure.cdn1.wdpromedia.com/dam/wdpro-assets/help/guest-services/guests-with-disabilities/WDW_Cognitive_Guide_compressed.pdf

7. Use your phone flashlight or buy a mini light for your child who is afraid of the dark areas on rides.  On one of the rides, it became pitch black for a minute, and we just sat there.  I ended up using the light of my phone to comfort Evie, letting her know that everything was ok and that we could have light if we needed to.  She definitely felt better after seeing the light.

That’s what I have for now!  Please share your Disney hacks for feeding tubes and sensory needs of you have some! 

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!  

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. 

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. 


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.

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)


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. 

Evie's 4th surgery...and tips!

Hi friends, it has been awhile. Since we last wrote, Evie had a few minor procedures that we had been "collecting" in order to jus...