Evie the Extraordinary and Her Mommy: The Journey As We Go

 Among the many things that the pandemic shut down was Evie's first sleep study. She's a little behind in getting this done, as most kids with Down Syndrome have it done sooner, but since she didn't snore or have other symptoms, we weren't in a rush.  When we finally had it scheduled, it was canceled early in the pandemic.  Now the new date is finally around the corner, and it caught us off guard!  One of the resources I have come to really appreciate is the Social Stories site on the Boston Children's Hospital website .  If your child is due for a procedure at the hospital, it's worth checking out.  My main goal this time is for Evie to have an inkling of understanding about why the heck they are trying to put stickers on her head and wrapping her up like a mummy.  I usually aim high, but I have very low expectations for her cooperation level!  I will just be pleased if we don't have to do this again!  For this sleep study story, I took the...

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 c...

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 ...

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 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 ...

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 w...

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...