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Showing posts from 2019

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 m

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 in

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

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

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 c

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,

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'

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'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! Th

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 th