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

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

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

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