That time when Marie Kondo gave us advice

I was reading Marie Kondo's Instagram site one day, and it asked people to comment on their home organization struggles.  I thought to myself "why not," and commented that I struggle with keeping my daughter's feeding tube and eating supplies organized on the kitchen counter.

Marie Kondo is known internationally for her philosophy of tidying and organizing. 

I was surprised to get a personal message from someone on her team, asking for my e-mail address so that they could better understand the situation.  I gave her my e-mail, and sent her a picture of the messy status of my kitchen counter. 

Oil, Miralax, calorie supplement, cups and bottles galore, cube trays, chewing devices...etc = no joy on my kitchen counter

She asked me a few clarifying questions, about whether the drying rack was for sterilized items, and other thoughtful questions, and then I got an e-mail that surprised me. 

The team had been a little stumped on what advice to send me, so they asked Marie Kondo herself!  And Marie Kondo sent us a message directly, to "Amy-san and Evie" and here's the advice she gave us (translated from Japanese via her team):

"I see...okay! So, we tend to focus on a specific spot in the kitchen where it seems like there’s a lot of stuff. The secret to this is to look around the other areas of the kitchen and see if there are items that don’t spark joy for you. Once you tackle the entire kitchen, there might be a spot that has extra space that you can use for the supplies that are on the counter.
There’s another way using boxes. With the perfect sized box, you can separate your items with each category (ex: bottles/plates/cups). Once the items find their “home”, you will realize that the kitchen seems to ‘spark joy’ for you. Amy and Evie, good luck with tidying!!"

I was tickled pink.  Marie Kondo herself!  

Weeks passed since receiving her advice--I just haven't had the time to do some organization.  But during a lunch break, I walked into the Muji store on Newbury Street, which I have been wanting to do for months.  After silently gushing in excitement over their pen selection, I saw shelves of storage boxes calling my name.  I was instantly inspired, bought a bunch of different sizes, and as soon as I got home, I set to work. 

I realized how many different cups and other feeding devices had collected on the counter--they were not giving any of us joy. So they went back to the basement. I then separated the cups into a container, bottle caps in another, and so on.  Putting things in the Muji boxes gave me joy. 

Here is the finished product.  I have less annoyance and more joy now when I look at the counter! Everything is where it should be!


Newly organized supplies

Closeup of box arrangement
Evie doesn't seem to understand how awesome this is on so many levels. I tried to tell her but she told me she wanted to play flashcards. Oh well.  Whatever gives her joy. 

When the School Nurse Calls...

You know you're a mom when your phone rings, and you recognize the number as the one for the school nurse, and promptly hold your breath, imagining the worst.  Usually they say right away "Evie's ok," and then continue on.  Today they didn't say that, and I was having a minor heart attack with every second that passed when someone who WASN'T the school nurse was calling me FOR the school nurse.  



Apparently there was a substitute nurse today (and for the next 2 weeks), and she was having trouble getting Evie's g-tube extension connected to her stomach port.  Somehow the whole g-tube button came out of her stomach, and the one other time this happened at school, the school nurse knew exactly how to get it back in and didn't even call me until it was back in. 

Not today. 

The person calling me said that she was calling for the nurse, and that Evie's g-tube button fell out, and would I like to come and put it in?  I said, well, I'm at work in Boston, and could go over in 40 minutes, but does the nurse know how to put the button back in?  The answer was no.  

And so I told the nurse I would walk her through it if she was game.  She was, and I told her how to prep for the insertion of a new g-tube button. 

For those who are interested, the kit comes with a small syringe.  After inflating the balloon to make sure there are no leaks, you draw up 2.5 mm (or whatever the kit says for your size) of bottled water into the syringe.  Then you put sterile lube on the tip of the deflated balloon for smooth insertion. 

A pic from one of my earliest posts about learning to g-tube.

Once she was prepped, I wished her luck, and stayed on speakerphone.  I heard them hold Evie down as I instructed, and then promptly heard Evie hollering and crying.  The nurse inserted the button successfully, but then couldn't get water to flush through the tube as Evie was straining and crying.  She wasn't in pain--she was just angry at being held down.   I gave the nurse permission to skip the water flush this morning and just to give her plenty of chances to sip water from a cup.  Evie got lots of hugs from her 1:1 aide after that, and calmed down.  

Crisis averted, I went back in the conference room and tried to catch my breath as I jumped back into my meeting at work.  

Hours later, I am wondering to myself if I will need to start a campaign for all of the school nurses to have g-tube training.  Tomorrow, I'm going to be marching to the substitute nurse's office to train her and train Evie's 1:1 to do g-tube for her.  Knowledge is power, and in this case, knowledge saves a trip to the ER and a possible surgery to re-insert a g-tube button if the button is out too long.  

I salute the nurses who taught me how to do this myself.  I salute all the caregivers out there who have become medical experts because they care for someone so deeply that they learn all sorts of unheard of skills in the common population.  I salute all the people in our lives (grandparents, friends,  teachers, babysitters) who haven't been afraid to learn how to handle Evie's g-tube, and have jumped in and learned how to help.  

This may prompt someone to ask "When is Evie going to be off the feeding tube?"  Well, it's a very slow journey, which can be slowed down if Evie feels like we are forcing her to eat, but she is much closer!  Today in feeding therapy, she put a puff all the way in her mouth for the first time!  She moved it around her mouth and then spit it out, but she didn't gag or cry, which is HUGE.  Thanks for cheering us on!


Evie the Wolverine and Glasses

How many optometrists does it take to find Evie's glasses prescription?  Today I found out the answer is 3.

Over the last several months, I thought I noticed Evie squinting.  I at first brushed it off because her last retinoscopy (the process of determining one's glasses prescription by watching the direction of the light reflex on the retina) had shown a mild myopic/near-sighted prescription.  But I got to thinking that it had been a couple years since this anesthetized exam (aka Exam Under Anesthesia (EUA)), and decided to take her to a pediatric ophthalmologist known for her touch with kids with special needs.

It was a battle zone.  We tried it the nice way, but Evie kept saying Bye Bye and trying to open the exam room door.  I held Evie down while my husband kept her legs from flailing, and the ophthalmologist pried her tight lids open while trying to take 1-second swipes with her retinoscope to see the retinal reflex.  After we were all a sweaty mess, she declared that Evie was a -6.75 prescription and definitely needed glasses.  As a mom and an optometrist, this number shocked me.

I talked it over with colleagues, I went back and forth about whether to question the findings.  In dealing with my own child, I couldn't make the decision because I was too emotional about it.

I decided to try myself, and dilated her eyes before bedtime.   I tried while she watched her iPad, and confirmed more myopia. However, she would not cooperate enough for me to get a great reading.  So I waited for her to fall asleep, and crept into her bedroom.  Friends, doing retinoscopy through crib slats is not recommended.  I had to contort my hands in positions that just weren't natural.  I again saw more myopia than I wanted, but could not get her eyelids pried open enough to hold both my scope and the trial lens at the same time, while contorting my body.

Finally, I made an appointment with an optometrist known for her work with kids with special needs, and who I wanted to meet anyway.  Just one more person giving it a shot would at least help me feel better about what I was going to prescribe.   This time, I dilated her eyes before the appointment (don't try this if you're not a licensed professional or without the permission of your doctor), which turned out to be key. There were way less tears, so that the drops could actually work and give us an accurate reading.  My dear daughter is ever so suspicious of instruments held near her face, so I used the flashlight on my iPhone to check if her pupils were dilated. Phone near my face, Mommy?  Sure, no problem! I love phones!

Enter in the pediatric optometrist.  She gave it a shot with just me holding Evie down, and quickly realized that my warnings were merited, and asked an assistant to help hold her lids open.  This assistant quickly found that Evie's lids like to flip very easily.  So the optometrist then went to get the other pediatric optometrist, who happens to be a friend of mine, and she pried open Evie's lids while the other optometrist did the retinoscopy, and I had one leg thrown over Evie's legs, while holding her arms against her chest, and holding her head down with my chin. The assistant helped me to sing Twinkle Twinkle Little Star over Evie's screaming.  It was glorious.

Of course, Evie got loose every so often, because we were sweaty and became more slippery.  We hadn't gotten around to cutting her nails, so my little Wolverine got loose and would swipe at my arms, chest, neck, and hands in her desperate attempts.  I am the walking wounded.

But we got a prescription, and it's the best yet!   It makes the most sense, and it's the most precise (she had some astigmatism).  For the eye nerds reading, it was a -3.00 -1.50 x180 and -4.00 sph.  Evie yelled Bye Bye very loudly when we left.

You may be wondering about what frames Evie will be getting.  Out of Miraflex, Nanovista, Dilli Dalli, and Tomato Glasses, I like the look and weight of the Tomato Glasses the most.  They are in my opinion the cutest, and very flexible with an adjustable nose bridge and replaceable parts in each kit.  If she destroys them, then I'll probably try Nanovista.  I managed to try on some frames with 5 seconds of success in having her keep them on.  Pray for me.  :)
You want me to wear these things all the time??
The moral of the story is:
1) Always trust your gut about your child's vision, and get another opinion if needed.
2) Sometimes it takes some creativity to get better results for our kids.  You can ask your eye care professional if you can bring the child to the visit dilated already, if you have similar levels of uncooperation as we do!  Asking them to observe the child in the waiting room first before bringing them into the exam room can take advantage of a lower level of anxiety if the child is scared of doctors.
3) It never hurts to get your eyes checked at any age!  Kids with DS are checked around 6 months old to look for an eye turn or high glasses prescription that could hinder their development.
4) Listen to Laurie Berkner's "These Are My Glasses" song over and over again to help your child think that glasses are fun.  It's SORT OF working for 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 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!


That time when Marie Kondo gave us advice

I was reading Marie Kondo's Instagram site one day, and it asked people to comment on their home organization struggles.  I thought to m...