Evie's and Amy's favorite things--Prime Day edition

Hi Evie fans!  I see some favorite things being featured on Amazon Prime Day (July 15-16), so I thought I'd share them. I'll keep adding as deals get released the next couple days!



EVIE's RECS:
Tegu Blocks: Evie got these when she was quite young, and as she ages, she appreciates the Tegu Blocks more and more.  They have a satisfying magnetic click, come in different shapes and sizes and colors, and they build fine motor skills!




Anything Peppa.  Enough said.


This isn't exactly on super sale, but we love it so much, that I wanted to share it anyway. Peppa's house has lights and sounds as well. You can turn off the sounds once you get annoyed (it took me about a week to get annoyed).



I just bought Connect 4 for Evie today because she has shown so much interest in this game after watching Blippi play it on Youtube.  If you want to be the most awesome house there is, you can buy the lawn version of Connect 4 and we will spend all day with you!
The regular version is on sale for $8.39!


Lawn version:


Evie loves her dot markers!  She's still not great at exerting enough pressure on the markers to make too much of a mark, but with dot markers, she's able to make more of a statement on paper.




20% off of these supportive toddler chairs!  They remind me of a Rifton chair without the saddle part.




Evie recommends all play kitchens!  If I had seen this, I might have gotten it instead of our IKEA kitchen! Only $47.70 right now!






AMY'S RECS:

 I bought these reusable snack bags for much more at Anthropologie.  I've been using my pink snack bag for a couple weeks now, and I really enjoy them.  They are dishwasher and microwave safe too! The Clear ones are still available last time I checked!




This home air purifier is $49.49 on sale!   I have two of these, and am tempted to get another just for the price.  It has made a difference in Evie waking up with a sniffly nose. During allergy season (which has been especially bad in Boston), this has been well worth it.



I wouldn't be me if I didn't post about the Instant Pot.  3 years later, I still make perfect corn on the cob on a 2- minute setting, and my chicken curry always turns out great.  I highly recommend this for busy moms! Usually $129.95, marked down to $69.99, and ringing up at only $55.59 right now!



A really great option for an extra TV you don't want to buy cable for. $14.99 on sale!



And the gadget we have in many rooms of the house--the Echo dot.  Evie loves to listen to music, and we love knowing the weather. You can even use it as an intercom.   Usually $50, then marked down to $24.99, now ringing up at only $20!



Happy shopping, everyone!

Moving On Up

At Evie's graduation ceremony from her pre-K class today (she's going to the older pre-K class in the fall), she covered her eyes.  BUT she then got up and walked over to the teacher when her name was called, and then snuck a peek to see where I was, and then walked to me with her head down and threw herself in my arms.  She WALKED to me and knew what she was supposed to do!  I call that a victory!  3 months ago, she may not have done either of those things. 


Evie was prepped by her teachers that this was the last day of school. She was not a happy girl when we pulled out of the parking lot and waved goodbye to the school building.  We are so thankful that she loves school that much.  Why does she love school so much?  Because she gets to do things like play dress up!  I am now scrambling to collect dress up necklaces, dresses, scarves, gloves, etc to accommodate her love for girly accessories!  We went to IKEA this weekend and bought a mirror to put up in her room so that she can play dress up! 


Another way that Evie is growing up is in her communication skills.  Today, I asked her if she wanted to go to the library, and she went to her NOVA Chat communication device and told me "I don't want to."  This was the first time she had expressed herself so fully, instead of making a sound of disgust.  I still wait for the day that I can have full conversations with my daughter, but this is an awesome start.  I am told by the SLP's in her life that she is a superstar with the NOVA Chat, and I am super proud of my girl.

Peer modeling has been awesome for Evie.  She has even started to ask to use the potty, and has done so successfully in the last week of school.  Today, her aide had a chance to say some words in the ceremony, and she beautifully said that her classmates have been so supportive of Evie, and she believes that Evie's classmates have benefited by being friends with Evie as well.  The other parents nodded their heads in agreement, and this mama's heart just got so full.  I am so thankful.  I am also so sad to leave her wonderful teaching team--they have fallen in love with Evie.  I invited them to our home to give her manicures, because she allowed them to do her hair, apply nail polish, and draw a spider tattoo on her arm.  I don't recognize this kid!

Next fall, we get to have the same wonderful aide, and we were able to meet her new teacher on the way out of the building today.  We felt so well taken care of.

What's in store for this newly-graduated 4-year-old?  A lot of trips to the library and the park, and hopefully some beach trips with her grandparents, and then off to summer school (Extended Summer program) for a month so that she doesn't regress too much!  Wishing you all a fabulous start to your summer!

PS Keep an eye out for more info about joining us on this year's Buddy Walk in October!!  Evie's other favorite musician is going to be there! AAAAAAHHH!


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. 

Love, 

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!!


Evie's and Amy's favorite things--Prime Day edition

Hi Evie fans!  I see some favorite things being featured on Amazon Prime Day (July 15-16), so I thought I'd share them. I'll keep ad...