Evie's food world just changed

For those of you getting excited by my title, no, she is not completely eating by mouth yet.  But she is completely on real food!

Evie just switched this past month to a different "formula" because Pediasure Peptide 1.5 density seemed to be causing her to lose weight.  She had been gaining on 1.0 density, but we were trying to help her to cut down on the amount of formula needed to maintain weight and still be interested in food.  Once she started losing weight, the GI doctor theorized that she was having absorption problems with the Pediasure, and suggested that we just switch her to Real Food Blends or Nourish. Both of these blends are real, blenderized food, and I was a big fan of getting her off of formula.  Not only would it be healthier in general, but she might become more regular as well (sorry, TMI, but not sorry).

Back in our Pediasure days, we used one can a day and poured some in through the g-tube throughout the day, as you would any liquid with the consistency of milk.  In switching to Real Food Blends, this got a little trickier because it's actual food that is more of a pulpy consistency.  To illustrate, imagine blending up beef, potatoes, and spinach and then making it go smoothly through a plastic tube. Not easy.

After some experimentation, here's my current setup:

One major thing I learned was that coconut milk cans have huge chunks of good fat at the top. I initially thought nothing of pouring out the liquid and leaving the chunks, and then realized that I was keeping about 30 of the 130 calories in this Trader Joe's can!  So I borrowed a hand immersion blender from a friend, and it made so much of a difference.  I now pour in the whole packet of RFB, pour in coconut milk to 12 oz on the blender container, and then top it off with water if needed.  Then I stick the hand blender inside the container, blend for a minute, and it's ready to use for the whole day! 



If you're not really sure about Real Food Blends, you can ask your Nutritionist for some samples, or even buy them off Amazon (which is what we did while waiting for insurance to approve).


Evie is still eating by mouth!  For a month, she didn't gain any weight on the new RFB.  The game changer this week was that we gave her 3 cubes (~6 oz) of blended food by mouth instead of the usual 2 (~4 oz),  and she ate it all.  Add the coconut milk with all the fat, and she gained a whole POUND this last week!  I almost fell over in shock.  It turns out her favorite dinner is chicken curry.  Who would have known.

Evie's blended French Toast being made
Evie smushing blueberries as part of her feeding therapy


Hope you are all having a fantastic food day like Evie!

It's a Jolly Holiday with Evie


Gearing up for the holidays was a whirlwind.  The week after Evie's birthday party, her class did some holiday activities, one of which was role-playing Santa and his reindeer, and climbing down the chimney (aka tunnel)!  I absolutely loved the picture they sent me of Evie, aka Santa, being pulled by 2 reindeer classmates.  This is what inclusion is!  Evie was fully included in the activity, and she was given support so she could fully participate!  I hope she understood how lucky she was to be Santa.  At least she kept the hat on. 



We went to visit my parents in CA over the break, and it was nice to have warmer weather and a change of scenery.  Evie was an absolute angel on the plane going to CA and coming back.  I am so thankful for the iPad...I mean... for my angel of a daughter.

Some fun family activities we found in the Riverside area were the Mission Inn, which was decorated for the holidays, Mt. Rubidoux for a quick hike and a Popeyes' picnic lunch afterwards, and the Pennypickle's Workshop Children's Museum in Temecula. 

Enjoying the festive environment at Mission Inn!


Evie loved the toddler playground at Mt. Rubidoux!

Pennypickle's Workshop is a cute little museum full of hands-on experiences in science for children of all ages. Evie liked the kitchen the most! 

Evie enjoyed playing with grandpa and grandma, and Mommy and Daddy got to go out sometimes on dates.  Our longest date ever was for most of the day at a friend's wedding in L.A.  I didn't really know what to do with myself. I felt like I should be feeding Evie or holding my hands over her ears when the applause was too loud.  It was a nice break!

This trip was a little different in terms of Evie's feeding tube. We have switched to a different formula, and there are little considerations that I needed to prep for.  More on that in my next post!

Back to real life for a full week tomorrow!  Happy New Year, everyone!

Party Tips for a 4 year old's birthday party in your home


Throwing a Penguin-themed birthday party for 15 kids in your home is no joke.

First you have to decide if you're insane enough to do this.  Then you have to think about whether your sensory-sensitive kid (sight, sound) can handle having so many people in their house. For this rookie mom, I at first didn't make the connection that 15 kids meant that parents and sometimes siblings might show up.  Once I got a grasp of the idea, I still thought it was doable if we had a good structure to prevent chaos.  And before you ask if Evie likes penguins, the answer is: yes, she does, but it's definitely penguin-themed because I like penguins and she lets me get away with it!

I asked Evie's favorite local musician if he would be willing to do a music class for 30 minutes.  I was ecstatic when he said yes.  If he could keep the kids busy for 30 minutes, that left 60 minutes to entertain them.

10:00 am Kids arrive and play in playroom in controlled chaos (controlled = parents watching them play)
10:30 am Music "class" starts--commence Jingle Bells, the theme from the Blob, some song with a One-Eyed, One-Horned Purple People-Eater, and other fan favorites from preschool


Sorry you can't see Evie's cute classmates or her fun teacher. We love them so much.


11:00 am Eat blue-frosted cupcakes and watch parents nicely try to prevent crumbs from getting on our rug. Realize that kids are starting to run around, and your friend Nancy starts making balloon animals at a frenzied pace.  (Penguin theme, no problem, says Nancy!)
Nancy's balloon extravaganza included penguins, swords, ninja and Hello Kitty balloons, and flowers! 

11:30 Party Ends!

Here's what we learned from our experience:

Tip 1: Winter germs. Enough said.  I still have PTSD from when she caught RSV and we spent 5 days in the hospital.  And from the countless nights that she got sick and wouldn't eat, and threw up her g-tube feeds in the middle of the night.  So this mama had no shame--I designed a quick sign and installed it with a little upside-down box with Purell on it.



Tip 2: Don't choose blue frosting because it looks like ice glaciers. Everyone gets blue beards and their hands get so messy. DO choose marshmallow penguins as your topper, because they are so cute, and their beaks and feet are lovingly hand-shaped from Starbursts by Auntie Kirsten.



Tip 3:  Have really good friends and family who volunteer to come and help.  Seriously, a big shoutout to her fairy godmothers Joy and Kirsten, her Auntie Nancy, and Uncle Ron, Aunt Cathy, and Auntie Liz!  We would not have been able to pull it off so well without you!

Tip 4: When your sensory-sensitive kid is overwhelmed by all the people, ask for her favorite song to play so that she comes out of her shell.

Tip 5: Open the windows, because 30 something people in one room gets pretty hot.

Tip 6: Treat your friends to lunch so that they will help you clean up and make it look like a party never happened. (Did I mention I love you, my friends?)

Will I do this next year?  Not sure.  One factor is whether Evie will be able to walk by then and interact more with her environment. If you're the praying kind, we need prayers that she would gain confidence in standing and walking. I feel like one day she's just going to skip all that and start running, but for now, she still prefers to crawl and cruise.

Happy 4th birthday, Evie!!


Your weekly Down Syndrome Awareness Month Digest

I'm having some trouble posting to so many places, so here is a summary of Days 7-14!  Thanks for all of your encouraging comments on this month of DS facts!  It makes it worth the effort! 💙💛

Day 7 DS Awareness: Embarking on the DS journey can be a roller coaster. It is our “framily” who keep us going when life throws some unexpected side trips, and who cheer with us during the many small victories. Thank you to everyone who has supported Evie for the Buddy Walk this year! We love you and appreciate you!  


Starting out the Buddy Walk! Evie was overwhelmed by the loud cheering at the start line. 


Day 8: An estimated 90% of moms with a prenatal DS diagnosis will choose to terminate their pregnancies. When I first found out our diagnosis, I had to search hard in general literature to find anything positive about having a child with Down Syndrome. Increased availability of non-invasive blood tests that can identify chromosomal defects could potentially eliminate people with DS in certain countries. For me and Evie, our goal is to raise awareness and show the joy in being a homie with an extra chromie! 





 Day 9 DS Awareness: Since the 1970’s, public schools have had to by law provide a free and appropriate education to individuals with Down Syndrome. We already see the benefits of this, and evie is only in preschool! And apparently she likes chess! Thanks for supporting public school education. They are pivotal for our children and our future,no matter who they are or where they are.




DS Awareness Day 10: Being included is priceless. Evie is fully included in her preschool class with appropriate assistance so that she can participate. These include an aide for safety, a special chair for support, and an electronic communication device (NOVA Chat). Evie loves being included, and just blossoms when she goes to school! Scroll for your daily evie pic!





DS Awareness Day 11: Babies with DS often spend some time in the NICU for various reasons. Evie was admitted for heart defects, pulmonary hypertension, and failure to gain weight. Our NICU nurses were lifesaving in so many ways. Massachusetts is currently voting to restrict nurse to patient ratios. While I strongly support having quality care and safe boundaries (Evie’s nurses in the NICU had two patients each), the way that #1 is written would likely be more costly and impact healthcare access in a negative way. Imagine going to the ER and being told to wait or to try another hospital because they have reached capacity. I don’t know about you, but when I go to the ER for help, I like to be seen! Safe limits are important, but with such a sweeping change that gives only 37 days to enact, they need to write the regulation with more care for consequences.  Evie says, Vote No on #1!



Evie's first bath

DS Awareness Day 12: People with Down Syndrome are not always happy, contrary to popular belief. They have the same emotions as everyone else. And sometimes they are sad that Mommy is testing out Halloween outfits and the skirt is so poufy that it’s scary.



DS Awareness Day 13: Some kids with DS take longer to speak verbally. It takes a lot of coordination to move the tongue and oral muscles correctly, and their tongues tend to be bigger for their smaller facial structure. Evie can say a few words, but gets frustrated when we don’t understand her utterances or signs. She started an augmentative communication device called a NOVA chat this week. So far she is very pleased with it. We are getting used to carrying it around everywhere, but so far so good.




DS Awareness Day 14: People with Down syndrome attend school, work, participate in decisions that affect them, have meaningful relationships, vote and contribute to society in many wonderful ways. The book that Evie is reading in the photo is called “I Love You for You.” It teaches various animals that they all have their own unique traits, and each one is special. This message is especially important for Evie, but I believe all children (and adults) need to know that each person has their own unique abilities and contributions to the world. When we set apart others because they are different, we ALL lose out. 


Day 6 of DS Awareness: Evie is smart, and flash cards!

DS Awareness Day 6: Before I knew anything about DS, I thought that my child would not be smart. I could not have been more wrong. Evie continues to show me on a regular basis how smart she is. She’s asks to do flash cards at least three times a day. She knows all of her letters and her basic numbers. She can tell me which words start with a certain letter, and she’s only 3. #nolimits #evietheextraordinary


Our favorite flashcards were passed on to us from another family on the DS journey.  They are awesome because of their large size and the sign language pictures on the back of each card!
I don't see them on Amazon, but they are at babysignlanguage.com. This is the reference book from the same brand:


 Our other favorites are:




Evie also loves treating this Eric Carle matching game as flash cards (they make a great gift!). She is working on learning to make pairs to match the animal pictures.



Happy flash carding, and Happy long weekend!

Days 4 and 5 of Down Syndrome Awareness! Reading books and Types of DS!

DS Awareness Day 4: When Evie was first born, I couldn’t even think about reading books to her amidst all the medical issues we were dealing with. But her daddy lovingly read books to her from her first week of life, and it has paid off. Evie loves books and has developed very strong opinions about which ones she wants to read. Yet another example of #dontlimitme and how Evie can do anything she sets about to do. #evietheextraordinary




DS Awareness Day #5: There are 3 types of Down Syndrome. There are three types of Down syndrome: trisomy 21 (nondisjunction) accounts for 95% of cases, translocation accounts for about 4%, and mosaicism accounts for about 1%. No matter what type, the preferred way to refer to a child is not as “the Down’s kid,” but by their name and mentioning that they happen to have Down Syndrome. Evie is that feisty little girl with the button nose and dimples, who has a passion for music and swinging. #evietheextraordinary



DS Awareness Day 3: Why Walking is so Hard

DS Awareness #3: Evie’s getting so good in her walker, that she surprised everyone in gym class by taking off to go tag her classmate during a game! Here’s a #tbt to the spring when Ms. Sassy Pants took off when I told her it was time to go home. She’s overcoming her hypotonia (low muscle tone) every day! With low muscle tone, walking or standing for long periods of time is hard work! #evietheextraordinary



Evie's food world just changed

For those of you getting excited by my title, no, she is not completely eating by mouth yet.  But she is completely on real food! Evie jus...