What I Want For Mother's Day

Dear Daughter:

I guess the easy answer for saying what I want for Mother’s Day is that I would love a big fat nap. But beyond that, from the depths of my heart, what I want for Mother’s Day and any other day, is knowing that I have helped you be your best self. I want to know that you are enjoying life to the fullest, and showing this world that you are so capable, even if you have an extra copy of a chromosome.

It doesn’t bother me that you took a while longer to learn to walk. I am mostly proud of the ways that you have learned to enjoy the small things, like making a duck out of Play-Doh, and playing flashcards with mommy. I want you to know that although the world says that you can’t do many things, that the smaller microcosm of the community around you is cheering for you so hard. 

When I post things on social media, our friends notice the little things about you like how you roll up your sleeves before you set yourself to a task, or how you fold your little hands in your lap and giggle when you are so proud of yourself. I am beyond thankful for people who believe in what you can do, and who teach their children to include you and see all that you have to offer.  The fact that your whole classroom clapped for you when you took successive steps all by yourself is testament to what the world can be if we all cheered for each other more often. 

You are definitely enjoying life right now as you sort your plastic vegetables by color into their respective buckets. You are yelling "pepper" and "apple," and looking so pleased with yourself!  I just high fived you after you sorted them all for the second time. You are on your third time now of sorting the vegetables, and I am all for that, because you are capable. I love you my daughter, and I am proud to be your mama. 


Your Proud Mama

The waiting makes it sweeter...

I have to admit that I love fast results and efficient progress.  Evie has challenged that part of me, but has taught me that the waiting makes the victory all the more sweet.

While her peers (even the ones with Down Syndrome) went on to walk and run, Evie trucked along in her walker.  I have learned that I need to remember that Evie goes on her own timeline and she will get there, but 3 years of waiting was hard!

But she finally reached this huge milestone, and I am so proud!  And not only were her parents cheering her on, her classmates gleefully counted each step that she took, and her friends and family from afar celebrated with us.

Here's a quick clip for you to share the excitement with us:

I can't wait to give away the wheelchair!

Just a couple weeks later, she now walks confidently down the hallway to the couch at home, and is attacking the stairs with gusto.  I feel happy every time I see her walk.  She wears Ikiki shoes indoors to allow her to wear her orthotics whenever she's walking.  They squeak every time she takes a step.  The squeaking brings joy to my heart.

We highly recommend the Ikiki shoes if you're looking for some sturdy shoes that fit SMO's!

NOVA Chat Hacks (i.e. Evie's talking device hacks)

For those of you who don't already know, Evie has an augmentative communication device called a NOVA Chat.  While Evie's oral motor skills are getting stronger, she still is not able to express herself verbally, and needs a way to communicate, especially in the school setting with people who do not know her sign language motions.

When we were first presented with our options at Boston Children's Hospital in the augmentative communication clinic, we had to decide between the iPad and the NOVA Chat.  We chose the NOVA chat because Evie is already way too attached to the iPad and we want her to see the NOVA Chat as a communication device and not a potential Youtube playing device.  But the iPad is a perfectly good choice for other kids!

Evie's preschool team has fully embraced the NOVA Chat.  We attended a half day training with a Saltillo rep, which was helpful, but the training was oriented more towards the therapist than the parents.

The NOVA Chat has a home page built of various core words that trigger other menus of related words.  For instance, if Evie wants to say "Want eat breakfast,"  she can hit want--> eat --> breakfast. When she taps "eat," another page of food options pops up.  She loves naming fruits and vegetables.  Her favorite is "Chinese cabbage."  As you can see below, if you click on the Chinese food square, you could potentially order Chinese food on the NOVA Chat!

Lots of Chinese food options on the NOVA Chat! I'd like egg drop soup, please!  
 In all seriousness, life with a NOVA Chat takes some adjustment.  We are supposed to have the device accessible to Evie at all times, but I will admit that we don't always have it there, because we know all of her signs, and she expresses herself to us with sign language.  However, we have it at the meal table and when we are starting a new activity so that Evie can tell us if she wants to do something else.  She is VERY good at saying "watch iPad."

Some hacks that I've discovered as we start this journey with augmentative communication are as follows:

1. A carrying case and a keyguard:  I got this case on Amazon for our NOVA Chat 10.  We originally started with NOVA Chat 8, which is smaller, but Evie had a lot of trouble with accuracy in tapping the squares.  So our trial changed to a NOVA Chat 10 with a 60-location keyboard.  We liked the 60-location setting much better than the 30-location because we didn't have to change pages as often when trying to say something. 

2. Name labels: I am terrified of losing this device, since the insurance is paying for it.  The first order of business was to use our NameBubbles tags on the device and the case so that her name is on them. I use these same labels on her bottles and wheelchair and backpack. 

3. Tile locator:  Tiles were on sale for the holidays, so I thought I'd try them out.  I am in love.  I have already used the locator to find my phone several times.  All you have to do is download the app, press some buttons to make the phone talk with the tile, and you are ready to lose things!   

4.  NOVA Chat strap: I would say that this strap has been annoying and helpful at the same time.  I would still recommend using it for school use, because when your hands are full with a walker, backpack, and a 28-pound 4 year old, a strap is very useful. 

5. Adaptive reading: As we help Evie navigate the NOVA Chat and see it as a way to express herself, our speech therapist forwarded me a Saltillo resource, which is NOVA Chat pictures that can be stuck on the pages of well-known children's books, so that Evie can read along as we go.  We use Glue Dots to stick these on once we print them out.  The picture below is for "If You Give A Mouse A Cookie," by Laura Numeroff.  Whomever gave Evie the whole set for her first birthday, you knew what you were doing! <3

This book is coming up in Feb in the preschool curriculum, and Evie will be ready!
An example of how we stuck the picture cards in her book.
6. Household activities:  The trainer and speech therapist also encouraged us to print common daily activities and stick them around the house.  Here's a pic of what is in the bathroom for Evie. 
These pictures show how to say clean, dirty, wet, wash, and dry.  
Evie is pretty good about getting up on her IKEA stool and turning on the faucet by herself, rubbing her hands together once she has soap, rinsing, turning off the water, and then knows how to dry her hands while she leans against my legs. I've been slightly stepping back to see if she notices that she can stand on her own.  So far, I've had a 50/50 success rate with that. 

Those are our NOVA Chat hacks!  I'd love to hear other people's hacks too!  

For the parents reading this because they are starting this journey, here's a quick summary of the timeline we followed in acquiring a NOVA Chat:
1. Referral from BCH Augmentative Communication SLP (speech therapist).
2. Fill out a gazillion forms for Saltillo and the funding company, PRC (forms provided by the therapist at the hospital). 
3. Wait for PRC to let us know that insurance has cleared the rental. 
4.  Training scheduled with the school team and parents. 
5. Start trial period, adjust to taking NOVA Chat everywhere. Record instances of how Evie is using the device over the next month (just doing a few days here and there over a progression seems to be ok). 
6. Follow up visit with SLP at the hospital to document progress. 
6. At end of trial period, SLP writes a report from hospital and speech therapist from school writes report.  Parents provide the usage log.  This goes to the funding company (PRC) and then is cleared with Saltillo (or whatever company you use) and we get to keep the device! 

Some notes about our experience...we started with a NOVA Chat 8 and no key guard, as well as a 30-location setup (i.e. 30 words on the screen at a time).  Evie's had trouble finding the very small words, and her fingers kept slipping down to the word below her target.  So we switched to a NOVA Chat 10 and a 60-location key guard during her trial, and this worked much better (although is a bit harder to carry around everywhere).   

I hope this helps someone in their journey, as it was a bit confusing at first.  Happy Talking! 

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. 

What I Want For Mother's Day

Dear Daughter: I guess the easy answer for saying what I want for Mother’s Day is that I would love a big fat nap. But beyond that, from t...