I'm not a mind reader

Dear Evie,
As much as I'd love this superpower, Mommy is not a mind reader.  When you are sitting in front of me asking for music, I do not know what song you are thinking of in your head.  I ask you if you want "The Cat Came Back,"  "Rocketship Run," or "Stand Up Sit Down," but you just growl at me and get frustrated that I can't read your mind. 

So I am doing something about it. 


I am making my own personalized Evie PECS board.  PECS stands for Picture Exchange Communication System.  It is very useful for helping nonverbal people to communicate.

Evie has matching communication books made of PECS pictures at school and at home.  But when it comes time for what song she wants to be played, the field is open.

We Are the Dinosaurs is a crowd favorite, and it's not a choice at school!  So it's time for the big guns.  Enter Evie's song menu.
I ran out of songs I really wanted to hear over and over again, so added favorite books an…

Evie's Favorite Blends

This post is dedicated to Evie's first boyfriend JJ, who lounged next to her on the carpet as they g-tubed peacefully together at the same time at the ripe age of 6 months.   He has moved onto greener pastures and now tries to sit on every woman's lap possible.  At the age of 3, he is a lady killer! We love you, JJ!  <3

I wanted to share some of Evie's favorite blended foods.  It's a tough balance when we have to fatten her up, but I have to make blends that taste good by mouth too.  Whatever she doesn't eat orally is thrown in a blender with some formula and put into her tummy by g-tube.  She eats 3 meals a day orally and gets supplemental formula/blends to help her with her growth rate.

We just had our most successful Nutrition visit yet since trying to lessen the amount of Pediasure!  Evie doubled her growth rate from 5 grams a day to 10 grams a day!  I wanted to take a picture.  Hearing "well done" at this visit is enough to make a tubie mama cry o…

Signing up with DDS

I'm not talking about signing up with a dentist here...this blog post is about the Department of Developmental Services.  The DDS is fully funded by Social Security and is meant to create partnerships and opportunities for people with intellectual and developmental disabilities to "participate fully and meaningfully in, and contribute to, their communities as valued members."
The way I understand it is that DDS is more to help adults with disabilities to engage and function and contribute to the community.  So why are we signing up little 3-year-old Evie?   I'm still figuring that out. I hear that getting into DDS now can help to make the transition easier as she becomes an adult.  The questionnaire to apply was already quite length for Birth-5 years old, so I imagine that it's even harder answering the questions for a teenager.  We can also be connected with the local ARC to have more resources for Evie.   When Evie is older and transitioning to more independent …

Why Valentine's Day cards are extra special to me

This year was Evie's first Valentine's Day as a preschooler.  I found out that her class wasn't swapping individual Valentine's Day cards, but that there was an option to put them on the cubbies for each child.  I've been waiting for a very long time to be able to do Valentine's Day cards for my daughter, and darn it, it was going to happen!

I want to share why Valentine's Day cards are extra special to me.  Ever since little Evie was at just 10 week of gestation in my womb, I had to process a lot of fear about what it would be like to have a child with Down Syndrome.  One of those fears was that she wouldn't have any friends.  
Yesterday, when she came home with a pile of Valentines, I was pretty excited to go through them.  The ones that unexpectedly most touched my heart were the ones that said Evie's name on them.  My daughter was thought of and included.  Someone took the time to write her name personally (and when you're 3, that means the…

A Letter to My Daughter's Class

Something I never thought I'd have to do when I first got pregnant was that I'd need to explain to the other kids in my daughter's class what's different about her.   And honestly, after spending a month in preschool, I don't think the other kids see too many of the differences.  The letter is more for the parents, so they won't be caught off guard if a child goes home talking about a "plastic tube that goes into Evie's stomach," or asking why Evie has a wheelchair and a walker.

Our preschool team has been amazing, and one of their suggestions for the transition was to write a letter to the other families in the preschool class, explaining the g-tube in case the children asked about it.  They put me in contact with another mom, whose tubie is now in 3rd grade and flourishing. So a lot of credit goes to this mom, who gave permission for them to send me a copy of her original letter, so that I wouldn't have to start from scratch.  She provided t…

Using squirrel equipment and upping our blender game

The thing about having a toddler on a feeding tube is that they become more active, and burn off the calories you work so hard to put in to gain weight.   It used to be just using Pediasure formula to fatten her up when she was an infant, but it's more complex now.

In the latest chapter in the saga of helping Evie to gain weight, we hit a plateau where we were giving her formula by tube and then feeding her pureed foods orally, but she was still growing at a slower rate than optimal.  At that point, the GI doc was concerned, and we could start seeing her ribs, despite adding oils and Duocal supplement to every meal.  We were so close to weaning her off formula, and then she started learning to walk and going to school to learn to be a big girl!  It felt like a step backwards to add back in more formula.  I was so discouraged, I couldn't sleep for two nights.

Our feeding therapist suggested that I think about blending real foods to supplement if I wasn't keen on the idea …

Evie's first day of school!

I didn't cry.  Everyone warned me I would cry, but I think I was too busy trying to unfold Evie's walker and help Erick with her wheelchair, and forgot to be emotional about dropping off Evie on her first day of preschool.   Evie didn't even notice that I left.  She saw kids playing with trains, and I plopped her down on the rug and left.  I kissed her goodbye and she didn't even blink.  She was too busy looking at the trains.

The preschool coordinator came to meet us, and took over, and that was that.  We left our precious cargo in SCHOOL!

One of the moms introduced herself in the hallway.  She said that her kids were told about Evie before she came, and they were all excited to have her there.  That meant so much to me. Evie actually has a Rifton chair that has a picture of her on the back so that other kids don't take her chair.  Rifton chairs provide more support for a kid who needs more support to sit for long periods of time.

Evie's going to have play ti…