Evie is 2!

A little overdue, but Evie is 2! I don't know where the time went. I have to say that I much prefer Year 2 over Year 1. Year 1 was filled with anxiety about her health, oxygen tanks and feeding tubes, and going to numerous doctors' appointments. Year 2 was more about watching her grow in so many ways, and getting to enjoy her more.

I swore I wasn't going to do anything for her birthday after last year's wedding birthday party, but Uno's did a great fundraiser that weekend for the Massachusetts Down Syndrome Congress, and donated 20% of the bill to the MDSC.  So we invited our friends to eat there with us!

As she turns 2, here are some FAQ's about Evie that you may have:

  •  Is Evie walking yet? No. But we just picked up Evie's ankle-foot orthotics, which we hope to ease her into as soon as I can get her bigger shoes to accommodate them. New purple sparkly hippo shoes are on their way! Hopefully with a more stable ankle support, she will feel more comfortable about walking.

  • Is Evie saying words these days? Dada is still her #1 word, but now she is saying Baba and sometimes says Mama when she's upset. Gee, thanks, Evie.  She tends to say Lalalala when she's annoyed, and GAH when she means no. She has no problems about letting us know how she feels. Her laughter is pure joy to my heart.
    Who's hiding under there?

  • How is Evie's eating? Better. We are working on getting her more fats and proteins in her food so that we can continue to cut back her g-tube feeds. It is a tricky balance of gaining weight and continuing her growth and development, while weaning her off the tube.

  •  What is Evie's favorite book these days? She loves the Karen Katz Lift-the-flap book "How Does Baby Feel." She also gravitates towards Eric Carle's "The Very Hungry Caterpillar." She tends to listen to the book until halfway and then close the book and move on to another book. I like to think she is going to be a speed reader.

  • Does Evie have any Christmas traditions? A big nap after lunch. She still cares more about the wrapping than the gift itself. The Christmas Eve service became nap time for her as well.  Evie's nap and mealtimes somehow caused gift opening to be at 6 pm this year!  I'm thankful for adult siblings who can wait to open gifts!





  •  How many articles of clothing does she have that have penguins on them? 10 and counting. It's winter time and Mommy is constantly seeing penguin clothing and is having trouble resisting them.  H&M and Target have awesome penguin clothing right now!
We are looking forward to 2017 with Evie!  We are hoping that this is the year that she will learn to walk and we can say goodbye to the feeding tube!  Wishing our friends and readers a wonderful start to the New Year!


Evie's Favorite Things, and Evie Climbs Mountains

The title of this post is a salute to the Sound of Music, which is one of my favorite musicals.  But mostly it is a list of Evie's favorite things.  Scroll to the end to see how Evie climbs mountains.

 I'm always on the lookout for the coolest toys that will help Evie's development, so hopefully this will help someone else.

The #1 favorite is Violet.  Since she was a baby, Evie has loved this toy. First for the light on the dog collar, then for the music, and now for the ability to press buttons and change the music like any independent toddler would want to do.  She likes the sound of music for sure!


One of Evie's favorite books is Click Clack Moo.  This book makes it's own reference to the Sound of Mooosic, and it's awesome!  Other favorite books are Guess How Much I Love You and the Pout-Pout Fish.  Lift-the-Flap books are irresistible to Miss Evie. Here's a trio of books that she loves: Chicka Chicka Boom Boom, Dear Zoo, and Click Clack Moo! And a bonus tip from Evie: "Daddy Kisses" is something she likes to read with her Daddy over and over!




As we work on teaching her about food, Evie has 2 sets of food toys that have been helpful.  One is a Melissa and Doug wooden set that comes with fruit that you can "cut" in half as you separate the velcro with the wooden knife.  Evie likes to pull the fruit pieces apart.  The other is made by Learning Resources, and she loves putting the food in the basket.






 Evie is learning to draw.  I wasn't aware that she knew how to hold the crayon to actually make a mark on the page, until we were sitting at Elephant Walk with my colleagues, and she drew on the menu with the crayon she was given.  So if you eat at the Elephant Walk in Cambridge anytime soon, and see crayon marks on page 3, that is a very special menu you have there. Now that I know she appreciates the mark of a good writing implement on paper, I got her short markers like these:


A surprise gift that she received for her upcoming 2nd birthday (!!!!) was the Fisher Price Sit n' Stand chair.


 Evie likes to open and close the seat on this chair.  That is her new skill lately--opening and closing whatever she can get her hands on.  This means that she crawls into the bathroom when we're not looking and lifts the toilet seat up and down, and then closes the door on us and sits in the dark until someone comes looking for her and opens the door.

Evie's love affair with the iPad is still ongoing.  I had to get a different kind of case for her so that it would stand on the table while she is sitting, so that she doesn't slouch over and look at the iPad on her lap.  The one below is the latest one, and seems to be working pretty well, when she agrees to keep it on the table instead of her lap.




This next item is something that I was scared to get due to space issues, but in the end I am so happy I got it.  Evie loves to read books--and loves to take them out of the box.  Having her own book shelf keeps the book somewhat neater and less chaotic, rather than all in a bin.  This one is kid-friendly and doesn't overwhelm our living room. It's also on super sale right now!




Evie has been practicing holding a crayon and knowing that it makes a mark on the paper.  I didn't realize that she had progressed in this skill until we were sitting in the Elephant Walk restaurant and I handed her a crayon, thinking she would wave it around as usual.  The next thing I knew, I looked at the menu in front of me, and Evie had left her mark on the menu.  That's when I knew it was time to upgrade to markers--Evie-sized markers.  She seems to have taken to these quite quickly.



 Ok, now it's time to share with you Evie's mommy's favorite thing.  The Instant Pot.  It is literally a game-changer when you are a busy mom or someone who gets home from work and doesn't have time to cook, and didn't defrost any meat the night before.  It is a pressure cooker, rice cooker, crockpot, steamer, and yogurt-maker all in one.  Oh, and you can make cheesecake in it too.



I've already gotten many of my friends to buy it, and now they are converts too. I was afraid that I would blow up my house at first, but now I am completely sold on the ability to take frozen meat out of the freezer and combine other ingredients, and still have dinner on the table in an hour by just pressing a few buttons and walking away. Mind blown.

 So now that we've gone over some of our favorite things, that brings me to how Evie has been climbing mountains...

 ...mountains of pillows. We are working on her core strength and her ability to strengthen her legs. The Occupational Therapist said to build pillow mountains to make her climb over them, and she has taken to this if there is an incentive at the end. An incentive like the computer and phone cords that are on the end tables, supposedly out of her reach. She will gladly climb over pillows to get over the sofa arm and launch herself onto the end table just to look at the cords and pull at them. But she's definitely getting stronger! This week we will pick up SMO's, which will strengthen her ankles so that hopefully she will learn to walk sooner rather than later!

Here's to an even stronger 2017 for Evie! We wish you all a very Merry Christmas and a wonderful 2017!

The Adventures of Eating Evie...

...and I meant this as an adjective and not a verb.  Evie is eating!!!

I haven't blogged in awhile, mostly because of being busy, but also because I have been focusing my energies on getting Evie to eat.  Since I last blogged, Evie has transitioned to a new nanny and also gone through a developmental leap (which I never knew about until I had a baby!).  In the midst of all of that, Evie decided she had zero interest in eating food by mouth. Zip, zero, zilch.  She would turn her head away, and if we begged her too many times, she started to cry.  My biggest fear was a food aversion, so we just backed off...

...and silently freaked out that Evie would never eat.  Well, I freaked out.  My husband almost never freaks out.  I like to think that my freaking out/intensive planning sometimes gets this family to bigger and better places.   My husband may have a differing opinion.

Over the past couple of months, Evie had gained enough weight for the nutritionist and GI doctor to feel comfortable weaning her off some of her formula.   We reduced her formula by 20% with their blessing, and watched Evie become more amenable to opening her mouth for a spoonful of puree.  We were ecstatic.  When the next appointment came, we were sure that a little more hunger would make Evie eat more.

We got a new plan for 30% reduction, and while I voiced concern to the doctor that a slow wean would just make her leak weight, she was convinced that because Evie wasn't eating textures other than puree, that it wasn't a good idea to reduce more than that.

Sure enough, over the next 2 months, Evie ate less and less, and started to look thinner (and longer).  We did a trial 4 days before her next appointment, and cut her formula by another 20 ml per gravity g-tube feed to see what she would do.

In those 4 days, Evie started eating the whole pouch.  She has NEVER eaten the whole pouch of puree.  Now at 40% reduction, Evie is eating a whole pouch for each meal, and opens her mouth like a baby bird.  Every time I see that, this mama is so happy.  To be continued, but we are definitely encouraged.

I've learned some lessons from these recent events, which I hope will help other parents:

1) Help the child have a fun experience with food.  Evie won't put many things in her mouth, and one of the best tips we got from our feeding specialist was to buy food toys so that Evie could associate food with fun.   Evie got this set and plays with it the most out of all of her toys. She loves the steak, the grapes, and the hot dog the most.




Evie also likes playing with jello and water. And table knives she can grab when we're not looking.

2)  G-tube parents--from all the reading I've done over the last couple years, it seems to be a theme that kids are overfed to the point of vomiting.  Be prepared to trial this if you think this may be the case.

3)  Learn from other parents who have done this already.  I am part of a Facebook group about Hunger-based tube weaning, and the parents there have helped me so much.

4) Listen for and watch your child's cues, and be creative.  Evie started associating her high chair with bad feelings, so we did away with it and fed her in a different environment.  Now she eats in a different booster chair that is up at the dining room table, and evidently likes being part of the action.

5)  Pay attention to what your doctor's philosophies about weaning are.  It will literally affect your child's daily life and yours as well.  After reading about different weaning approaches, I am a fan of hunger-based weaning. Hunger-based weaning should be done with a plan in place before starting.  I wish I had listened to my instinct to cut the feed further than hanging out at 30% when I saw her eating more.  She completely lost her momentum when we stopped reducing the amount.

6) Watch for wet diapers (and behavior) as a sign of hydration.   Nutritionists follow a formula, but you know your child best.

If someone had told me 3 years ago that I'd be blogging about wet diapers and plastic food toys, I would told them that they were crazy.  This thing called parenthood is amazingly rewarding but so hard!  I am thankful every day for the community of people we have met who love Evie and ask us how she is doing.  You guys rock!

Why I feel sad sometimes, and why squeaking hippos make me feel better

I wouldn't trade Evie for the world. But the other day, I felt a sudden sadness that this world expects certain things and she is not on its timeline.  We celebrate the same victories with her...just a lot later. And I see the gap of time growing bigger from her peers.  I recognize that we are now entering the time I dreaded a bit--the time where she's not a teeny tiny baby whose job is only to look cute.

Now she's expected to walk and talk (insert where someone tells me their child didn't walk until age 2, which I do appreciate).   At 20 months (Happy 20 months, Evie!), Evie is able to stand with assistance or lean on something for longer and longer periods of time. But I don't know if she will walk this year or next year or even by age 3.

Here's a nifty chart that shows the typical range for certain skills for a typical child vs a child with DS.

 
(from "Down Syndrome Awareness Month." http://blog.epichealthservices.com/down-syndrome-awareness-month/)


Meanwhile, we just keep chipping away at those skills.



Evie working on good seated posture while using an eye patch to address how one eye sees better than the other
I got her cute hippo sneakers with squeakers not only to give her feet more support, but also to make myself feel better when I heard she will provably need ankle or shin orthotics.  There's nothing like looking at a sparkly purple hippo face when you are sad that your child has to have leg braces of some sort (more on this when I actually figure out what these will be like). 
They squeak too!  Click on the picture to see them on Amazon.
In these days when I'm feeling a little sad for my baby, I remember the following things:

1) Evie's going to the same destination. She's just taking the scenic route. 


2) I know people who have kids with DS who are older and they are doing great.  They have jobs, they have friends, and they have people who love them dearly.

3) I have friends who have kids with DS who are Evie's age and they can commiserate with me at any time. Such an awesome support!


4)  I get to cuddle Evie a lot longer than other parents whose kids are busy walking around and don't care to snuggle as much anymore!

Love this diagram:


And if you are the mushy type and want to cry along with me...as I think about Evie going to kindergarten someday, this is an awesome post written by Noah's Dad about his son's first day in kindergarten this year. I will have to go back and read this when she's going to school.

Happy Back to School, for those of you moms who are going through it in these next few weeks!

Babysitters...I mean Baby Apps

I started motherhood determined not to let Evie have too much screen time.  I would say that still applies for TV, but I am now convinced that the iPad is a great tool for Evie's learning.  She is, after all, a child of the future!   As technology gets used more and more, especially with assisted learning, I see it as an advantage for Evie to already know how to use an iPad.


Here are our favorite apps!

Peekaboo Farm: When Evie first started looking at this app, she didn't understand that she should hit the screen to see the animals.  Now she understands Cause and Effect, and gets rewarded by a cow appearing and mooing at her.  This is not to be confused with Peekaboo Kids (instead of Farm), which isn't bad, but shows certain animals answering nature's call and then cackling, if you're offended by that.

Peekaboo Fridge:  A variant of Peekaboo Farm, but just as good.  If we are teaching her about food, then why not?  They also have Peekaboo Christmas, Peekaboo Halloween, and Peekaboo Forest. I personally don't like the Halloween and Forest versions.

Smart Rattle:  This is not a high tech game. But it's riveting somehow.  Every 20 seconds, the scene changes and objects like farm animals, cars, ocean life, etc float across the screen and make noises or spin around if the baby touches the screen.  Evie could stare at it for hours. You can shake your phone and make the animals shake around too. She has great coordination with holding an iPhone (of course).

Leapfrog Toddler Rhythms: Evie loves music, and she loves this app. She can sit with this app (just staring and listening) for an hour if I let her.

Baby Sign: Evie likes watching the baby sign words, and we learn baby sign language slowly. Very slowly. With nice splotches of drool on my iPad screen.

Giggle Gang: Somehow these little fuzzy circle people who sing when you tap on them make Evie mesmerized.  There's a piano keyboard on it too. Good cause and effect.

Patty Shukla: Our latest is the Patty Shukla Toddler App (volume 4). Patty Shukla's soothing yet fun voice has allowed me to reclaim my games in Words With Friends and catch a Pokemon here and there in the living room. Evie is fascinated with the singing and I've seen her following the motions of the kids on the screen.  Her favorite song is 5 Little Penguins. That's my girl!

Evie showing off her nice posture while sitting on her own (her legs could be less splayed, but it's a work in progress).

Pandora: Our current favorite stations are Raffi, Music Together, and Toddler Music.  Evie loves Raffi's "Brush Your Teeth" song with a passion, even when Daddy makes up the words and they are so wrong.  (Love you, husband!)

I stumbled across a great care.com article called "22 Best Apps for Children With Special Needs." Included is a link to a mom's spreadsheet that lists apps for all categories  you can think of: Communication for non-verbal children, Language Development, Math, Games, Music, etc.
The article also describes recommendations by specialists for apps to help social cues, telling time, dexterity, and other important life skills.

My next project is to take pictures of certain objects/verbs that we use often, and train Evie to point to them when she wants to do these things.  She is still learning to point--right now pointing means jabbing me in the face with her thumb.  I'm told by our OT that kids with DS tend to learn to point with the

Please feel free to share any apps that you like for your kids, or any tips for helping Evie to learn more ways of communication!

Things I never thought about with food

We got the go-ahead from our GI doc to cut down the amount of formula by g-tube to try to make Evie a little hungrier.  There is a whole world out there about different philosophies of weaning kids off g-tubes, and I won't go into it here, but it's truly making my head spin.  I am just going to give this plan a chance (of reducing 20%*) and give Evie a few weeks to figure out that food is even more fun than she thought.  We expect she will lose a few ounces here and there, and our goal is to use some food strategies to keep her from losing too much weight while she expands her food horizons. The most important lesson for the summer is: FOOD IS FUN, EVIE!


So you need your kid to gain weight. She doesn't even eat food with too much texture yet. She can eat purees and yogurt, and that's about it.  How do you expand her palette and avoid food aversions at the same time?

I haven't come across a comprehensive list of food tips, so I'm going to write down what I've learned so far as notes to myself, and I invite any other tips so I can make a more comprehensive list! 

1. USE GOOD FATS.
Add olive oil to either g-tube feeds or any purees or blended foods. At this stage, we are doing 1/2 teaspoon of olive oil in 100 ml milk by g-tube.


  • Avocado: blended, mashed, whatever way you can get it in. My friend adds some vanilla and sugar to the avocado for her son.  Evie is working towards this but the weight of the food on her tongue still makes her gag.  Turns out she likes it mixed with her food pouch for some flavor and some almond milk to thin it out a bit.
  • Full milkfat yogurts and smoothies. Enough said. We mix in Siggi's 4% milk fat yogurt (wild berry flavor) with some of Evie's purees.  These are an expensive habit, but whatever works for Evie!
  • Use a base like mashed potatoes or mashed sweet potatoes or avocado, and mix in butter or olive oil or coconut oil. 

2. ADD GRAINS: OATMEAL, QUINOA, BARLEY, AMARANTH, ETC (I still don't quite know what amaranth is!).  As Evie gets less Pediasure Peptide by g-tube, we need to boost carbs. So we are adding baby oatmeal to her purees, and gradually adding more and more to increase texture exposure. She's doing great with this! Gerber makes flavored baby oatmeal in little packets, and Evie is currently enjoying apple and sweet potato flavor oatmeal in her purees.

3. OFFER BOLD TASTES: 
Try bolder tastes to "waken" the taste buds. So far Evie has not been impressed with ketchup, BBQ sauce, veggie straws, but we will keep offering her things. I've been told that we have to keep offering her these tastes even if she doesn't like them the first time around.  Other ideas:

  • Ranch dressing
  • Spicy foods
  • Hummus



4.  OFFER FOODS THAT ARE EASY TO HOLD:

  • French fries (with the ends snipped off): Evie says nope
  • Pasta
  • Bamba peanut snacks
  • shredded cheese
  • Green beans (remove the strings)
  • Mini muffins
  • Veggie Straws: Evie says nope
  • Raspberries: Evie says no to tiny little seeds
  • Banana chunks: Evie says I like to squish this, but forget eating it
  • Pieces of avocado
  • Cheerios: Evie says I like to throw these on the floor. 
  • Zucchini 
  • Shredded Cheese
  • Strawberries
  • Mango pieces
  • Puffs: Evie says "what is this dried piece of styrofoam you are putting in my mouth? ptooey!"
  • ...and jello! Evie likes to play with jello, which is awesome for food play!  She will actually eat it!



This jello stuff jiggles, Mama!



5. FOODS THAT ARE EASY TO CHEW: (Evie's not ready for this yet)

  • Baked beans
  • Diced peaches
  • Scrambled eggs (add heavy cream and cheese)
  • Cream of wheat
  • Refried beans with broth
  • Mashed potato with cream and butter
  • Scrambled eggs


6. REFRESHING DRINKS/TREATS:  Yay for summer!

  • Slushy drinks
  • Ice cream
  • Frozen custard
  • Virgin Daiquiris
  • Popsicles


7. POTENTIALLY USEFUL DEVICES (Every kid is different!)

  • Clear Solo cups (the clear cup allows the child to see when the fluid is close to their mouth)
  • Open cup with cutout like Doidy cup or Flexi Cup
  • Munchkin cup with weighted straw
  • Munchkin 360
  • Dixie cup or Medicine cup (for less travel time to mouth)
  • Honey Bear with straw (can squeeze the liquid up closer to their mouth)
  • Tilty cup (slanted bottom makes it so the baby doesn't have to tip their head back to drink)


OTHER TIPS THAT I'VE LEARNED (Thanks to multiple FB groups):

  • Have a food "picnic" every day and put different foods on the blanket and make tasting a fun thing.
  • Once the child is significantly close to fully weaned, food has to be available frequently to encourage eating.
  • Put small amounts of different types of food in an empty ice cube tray and make tasting a game.
  • Drinking is a challenge if it's hard for the child to coordinate their oral muscles.  Thickening liquids so that it's too thick to flow fast and too thin to stay stagnant in the cup makes it so the child can learn to practice swallowing at a slower pace.  Evie is practicing with applesauce and smoothies. 

A big thank you to the parents who have gone before us and are sharing their tips! Keep them coming!

Some Resources:
Mealtime Notions: some articles and tips, as well as feeding products
Feeding Tube Association: I read this site the most
Facebook group of Home-Based Weaning

*To be continued about whether 20% is good enough to induce hunger in a child who is being fed continuously by g-tube overnight and having 3 bolus feeds by day.  I had wanted to do 30% and then 50% reductions, but the doctor suggested 20% first, so we will try that and see. 

A big Heartiversary

One year ago, we were already in the hospital with Evie, who was prepped for her big day.  It's not every day that your child goes in for open heart surgery. I felt terrified, excited, anxious, and confident all at the same time.  

Terrified because of all the risks of heart surgery.

Excited because finally my baby wouldn't be too tired from the 3 holes in her heart to do anything. 

Anxious because Evie's life was in someone else's hands.

Confident because Evie was already a miracle from God, and He had already shown us that she had things to do in her lifetime! 

When Evie was picked up by a nurse and the nurse walked away from us to the OR, she looked over her shoulder at us and my arms felt empty. 

The hours of waiting went in segments of phone calls of updates from the nurse. We wandered around the hospital, just waiting for the next call.  The hardest segment was after the call that Evie was on the bypass machine, which essentially meant that her heart was stopped for the crucial part of the surgery.  As I write this, I feel a twinge of that urge to cry or rush into the OR to hug Evie.  But Evie is sleeping soundly in the next room!

When the call came that Evie's own heart was beating again on its own, I felt a burden whoosh out of me. Erick seemed unflappable through the whole thing. That was infuriating and reassuring at the same time. 

As Evie recovered, her personality came back, and for someone who had her chest cut open, she healed up very quickly!  The whole story is in my blog a year ago. 



Today, Evie is a squirmy, feisty toddler who rules us with her smile.  I am thankful every day for Dr. Quinonez, our heart surgeon, for Dr. Rathod, our cardiologist, and for Dr. Prosnitz, the cardiology fellow who has followed our case from the beginning.  Because of them and God's healing, Evie is strong enough to dive bomb towards the floor because she wants a toy, and shouts in excitement when Daddy plays peek a boo with her. 

Happy Heartiversary, Evie! Mommy and Daddy love you so much!!






Personalized board books for Evie

Evie loves books. When we say, "Evie, do you want to read a book?" She gives an excited yell in response.  Every night, Daddy reads 3 books to Evie, and she pays attention. Evie's all-time favorite book is Brown Bear, Brown Bear by Eric Carle.  Thank goodness somehow we got 2 copies of this book. One in each room that Evie hangs out in.



Our developmental therapist suggested that we make a book with pictures of important family members so that she could learn their names.

I thought about making my own and laminating the pages, or buying a ready-made board book and pasting pictures onto the pages, but I didn't like the thought that Evie could rip apart my hard work with little effort, or that the pages might be too flimsy for her to turn. So I found a company that does this, called Pint Size Productions.  They make board books with digital photos, so the result is a picture book of the quality that Evie is used to looking at.

Evie is currently being well-versed on the faces of her grandparents, uncles, aunts, godparents, and nanny.
I was pretty pleased with the result, and highly recommend this company.  It was a little pricey, but then I thought about how this book will last for years, and is a nice keepsake. (Read on for a promo code for our readers!)

My second book is called "Evie Can Do It!"  It runs through how Evie can...clap, eat, drink (shameless plug to show her drinking is cool), bathe, ride a horse, read a book, etc. I wrote it this way so that Evie would clap along.

Its no secret that Evie likes looking at herself in the mirror, so it makes sense that she would look at a book about herself!  When we get to the end, Evie claps for herself.  Every time we say "Good job, Evie," she knows she did a good job and starts clapping!


I wrote to the company Pint Size Productions to ask if they would provide a promo code so I could tell them about their board books, and they delivered! Go to this site: www.pintsizeproductions.com and use the promo code PINTSIZETHANKYOU16.

Happy book-making! 

Virtual walking, and Team Down Syndrome

Hi all!  Evie here. I haven't learned how to walk yet, but I found out that I can be a virtual walker and still help to raise money for Team Down Syndrome at the Boston Childrens Hospital.  Please consider donating to my team so we can help to support the Down Syndrome Clinic, which has been instrumental in my family's life in the past 2 years.

Here is my very own personal page!

Thank you for your support and love!

Love,
Evie



The greatest guessing game of all

The greatest guessing game of all is...how to motivate Evie to eat.  Someone was surprised that we actually count the number of BITES (and not ounces) that Evie takes. Well, that's because that's all she'll eat by mouth.  We are averaging 5-8 bites a day, although every once in awhile she'll eat more than 20 bites for our nanny, who is definitely our MVP. The end goal is to cut down on her g-tube feeds so that she'll be hungrier. When we get clearance for having gained back all the weight she lost this winter, we will start the adventure!

In the meantime, we definitely have learned some helpful tips for those for which eating is not second nature. Here are some of the finer points of eating we have learned:

1.  A child with oral aversions or sensitivities can be very sensitive to where the food falls on her tongue.  When we feed her with a spoon, she does fine with food on the tip of her tongue.  But any food towards the middle of her tongue makes her gag.

2. For some reason, when she gags, if we blow gently on her face, she stops gagging and smiles.  It's like magic. Wiping her mouth helps too, but we try not to do that every time because we want her to get used to the sensory feeling of food on her face.


3. Part of the goal with Evie's eating is to teach her that food is fun.  So we try to help her to play with food, in the hopes that she will learn to bring her fingers to her mouth and start tasting more things. She loves playing with water and grabbing her bowl while we are trying to feed her, and then flinging it to the floor. Thanks, Evie...

4. They say spicy and salty foods can be motivating for a child, but Evie just makes a funny face and turns her head away.  She still prefer sweet food. 

5. When Evie turns her head away and grunts to say "no," we have to honor her "no" and avoid continuing to offer her food.  If we don't respect her "no," the food aversion gets worse. We keep telling ourselves it's the quality of the eating, and not the quantity.

6. I have stopped buying gadgets or fancy cups.  I don't think they work (10 different cups later).  That's just my experience with Evie, but it seems like the things that have worked best are clear medicine cups for drinking (smaller volume, less waiting time to get to the mouth, able to see when the liquid is close to the mouth), low profile spoons (we use the ones below or the Munchkin infant spoons), and modeling drinking and eating for Evie.  Evie likes to drink from adult glasses when she sees us drinking from them. She prefers fine china instead of cheap plastic cups.  That's my Princess Evie!


7. We were told to put rolled up towels under Evie's arms in the high chair to stabilize her. Apparently she won't bring her arms up to play with food because she's working so hard just to sit up in her chair.  Who knew it was so much work to bring her hands up to the tray? This mommy didn't!


So what is Evie doing lately and saying yes to?  Besides eating Mommy's cell phone and licking her iPad, she is still ok with Level 2 purees (mostly fruits), Siggi's 4% milk fat wild berry yogurt, and tastes of my Boloco Soy Berry smoothie.  She LOVES applesauce and the other flavors of the Gerber's First Tastes snacks.



What kind of help do we get for Evie's feeding?
We have a weekly visit from an Early Intervention speech-language pathologist (SLP) who knows a lot about feeding. We also see a SLP every few months at Boston Childrens, and then see another SLP when we have a morning at the Down Syndrome Clinic at Boston Childrens.  With all those visits, I wish it meant that we made tons of progress, but really it's up to Evie and how much she wants to eat.  My hope is that soon we will be given medical clearance to cut back on her g-tube feeds and start making her more hungry so that she will be more interested in eating higher volumes.  Evie is finally back at her weight that she was in November, before the horrible winter flu/RSV/norovirus season that hit us!


We hope everyone is enjoying spring as much as we are! Lots of pics of Evie enjoying springtime to come!

Baring my soul at work, and the future of people with Down Syndrome

I just laid it all out there. I hadn't woken up and gone to a communication and teaching conference thinking that I was going to be so vulnerable with my colleagues, but when we were asked to give a 2 minute talk on any topic of our choice, I knew I had my topic. "NO LIMITS."

I started by saying that I wanted to share my journey with Down Syndrome, and to convince them not to limit their expectations of people who have DS. I told them my theme was NO LIMITS.   This is totally a popular tag line in the DS Community, but they had never heard it before.

As I told them that we had found out at 10 weeks in utero that our daughter had DS, and that she was a girl, I started to realize that I might just cry while I told my story to my coworkers. But it was too late--I had already started my story. 

With a voice that started out strong and quickly became shaky, I told my colleagues that my initial response to the diagnosis was to think that my daughter would never go to college, wouldn't be that smart, and would have tons of medical problems. I told them how we found out that our baby girl had holes in her heart. I smiled when I said that as we processed and learned more, we found out that there were people with DS who had PhD's, were champion swimmers, musicians, lobbyists, entrepreneurs, and so much more. There was a palpable relief in the room when I smiled. A couple coworkers told me later that they wanted to cry too, but that when I smiled, they could breathe with me. 

I almost lost it when I said that Evie was taken away from me right after she was born because she couldn't breathe, and then spent 6 weeks in the NICU.  Apparently I still can't say that without tearing up, 16 months later. I shared about how she couldn't eat enough because of the holes in her heart, and that she now has a feeding tube.  

The best part in the storytelling for me was sharing that Evie has surpassed my expectations in many ways, even if she had an extra copy of the 21st chromosome.  The example I gave was that we were told that she wouldn't crawl for a very long time, and she is now already crawling across the living room. I was excited to see what else Evie will show us she can do.  As I finished, I asked my audience of optometrists to remember to place NO LIMITS on people with Down Syndrome, and to enjoy interacting with them as they would any other person.

When I finished, I was pretty much shaking. I had laid it all out there and bared my soul to my coworkers, with whom I'd rather appear unflappable.  I had no idea if I had just stunned them all, and just babbled for 2 minutes.

But they were awesome. They told me that they wouldn't change a thing about how I had presented it, and that I could have been doing a PSA for people with disabilities.  They told me that they felt pulled into my story and were inspired.  And they said that they were glad that I had acknowledged how I had initially felt about Down Syndrome so that they could also realize that they needed to be more aware.

I felt validated by my colleagues, and most importantly, I felt like I had done my share of raising DS awareness for the day.  Even though it totally drove me out of my comfort zone, I knew there was no way that I could pass up sharing my story in the hopes of helping a few more people to understand that the future is bright and unlimited for kids with DS.   And in the process, I found out that there are no limits for me as Evie's mommy either.  NO LIMITS!



Some clips of amazing adults who happen to have DS:

A hip-hop dancer

A lobbyist

This guy plays 7 instruments, travels the world, won medals in the Special Olympics, and has been on Oprah:
http://www.buffalonews.com/city-region/wheatfield/musician-with-downs-syndrome-provides-inspiration-to-others-20131130

An entrepreneur and TV star

A model

The first woman with DS to get a doctorate:

Here are some great resources for further information:
My Child Without Limits
National Down Syndrome Society brochure for expectant parents

Evie the pirate...for 30 minutes


Evie's eye turn has been getting a bit more pronounced. Her eyes switch off to turn in towards her nose most of the time.  This is called intermittent alternating esotropia (if they turned out, it would be exotropia).  My initial post about eyes is here.


She also has huge epicanthal folds, which is basically the extra skin that covers the nasal corners of the eyes, and can make an eye turn, known as strabismus, look larger than it is. I was hoping she would grow out of it, but my observations were confirmed at her last ophthalmology visit.  The size of her eye turn had doubled in the last 8 months.   I could have brought prism bars home from work to measure them, but there's just something about doing an exam on your own kid--I am too biased and emotionally involved to do it myself.



Here is Evie with an eye patch!  We are doing it every 30 minutes on her right eye, because her left eye is the one that turns in more often. If we teach the left eye to be used more often, we can hopefully make both eyes more equal in use.  Both eyes have the same vision, which is a good thing. 

Evie doesn't like her eye patch, but she doesn't struggle against it as much as before (she gets to use the iPad or read books with Daddy as a reward).  You can get regular size patches or junior size patches.  The ophthalmologist gave us a tip that the junior size patches sometimes takes the baby's eyebrow hairs with it. She suggested cutting the regular size to a smaller margin around the edges, and also sticking the patch to our clothes a couple times before applying it to Evie's face, so it wouldn't stick as hard.  The winning combo was a bigger patch with the margins cut down, and not sticking it to our clothes. Evie seems to tolerate this well.  30 minutes seems like not too much, but it's eternity when the baby is cranky and trying to rub her patch off her face!


These are just plain fun:


Eventually, Evie will need corrective eye muscle surgery. Generally, they try to do surgery for large amounts of strabismus before age 2 to increase the chance that the baby's 3-D vision will develop at a basic level.  However, the ophthalmologist told us that even if this is done before age 2, the chances of developing good binocularity are low.  Given that Evie has Down Syndrome and it's a risk each time she's put under anesthesia, she wants to wait until after age 2 to consider surgery, and to combine it with any other procedures that may need to be done.  I'm ok with waiting and letting a full year pass from Evie's heart surgery to try another surgery!

In other news, Evie is near-sighted like Mommy and Daddy. Good strong myopic genes. :)


How to sit like a big girl...and another milestone!

I took sitting for granted until Evie got occupational and physical therapy.  First I waited for her to sit up on her own, and then once she did, I learned there was the right way and the wrong way to sit. Sometimes I'm just so proud that she got to the next milestone, only to find out that there's another one that we are aiming for that she's not doing "correctly." For instance, while she sits up for long periods of time now, the way she sits is to stick one leg behind her to give her more stability.  Or she "tripods" and leans on her hands.   The right way is to "ring sit" so that she can strengthen her core, and ideally she doesn't need to prop herself up when she gets tired.
Sticking a leg out to balance herself
I must stick one leg out at all times and rest my hands on my knees. Sitting is hard work!
Ring sitting! But still leaning on my knees.

Not too shabby!  Sitting like a champ. 
But who needs to stay still?!

We were also told that it would take Evie a long time (months) to crawl, and she did take longer to do so, but ladies and gentlemen, we have a crawling girl in the house!  In the span of a week, she has decided that given the right motivation (Daddy or an iPhone), she will crawl across the room! This was one of our goals, so we are very happy!  Daddy gets a lot of credit for helping Evie to crawl.  He plays with her every night and gets her up and moving!

We capped off an exciting week of crawling with Evie's first trip to the zoo!  The animals were too far away for her to really be interested in them, but she had tons of fun being outdoors and giggling at the trees. 

First trip to the zoo! It's hard to see, but I'm smiling!
Happy 16 months, Evie!  Way to go!

Evie gets sprinkled, and a few cool products

Evie has had a busy month!  First she got the norovirus and gave it to Mommy, Daddy, our nanny, Yin-Yin, Ah-Gong, and Ah-Ma.  Then she started teething again and is getting in her 2 front teeth!

On Palm Sunday, Evie got sprinkled!  That is to say, Evie got baptized!  I've been waiting for this day for almost a year.

Evie gives Pastor Dave "the eye"
We would have done it sooner, but it's so much easier to baptize a baby when you don't have to lug an oxygen tank on the stage with you, and photos are so much nicer without oxygen tubes!  After Evie had her heart surgery at 5 months old, we got busy with my going back to work, and then we put it off for awhile.  So the day finally came!  Evie was a shining star, and didn't cry at all! We were happy to celebrate this day of acknowledging that Evie is our gift from God, and that she is a child of God.


Evie had quality time with both sets of grandparents this past year. We are grateful for all they have done, especially Evie's Yin-Yin, for helping us to get Evie stronger.  Now Mommy and Daddy are on their own with Evie (with the awesome nanny's help!)!

And now, time for Evie's Mommy's Product Recs!

This product has replaced the bulky ice packs in our freezer. I love their slim fit both in our freezer and in our cooler bag when we have to go out. It's also easier to put them in the freezer bag for her overnight feed with the g-tube. Oh, and I guess they are good for lunch bags too! Totally a life changer when you are carrying around a cooler bag and it suddenly gets lighter because the ice packs aren't as dense.
 
In her EI baby playgroup, I noticed that Evie was starting to show more interest in the bouncy horse. So I did some research and found Rody, which also can have a rocker base. Evie is enjoying Rody more and more!



In Evie feeding news, Evie has lost a bit of weight thanks to RSV and the norovirus, as well as being an active toddler.  We are trying to gain back the weight that she lost, so that we can be in a good place to start cutting her g-tube feeds and making her more hungry to eat by mouth.  Evie seems to still prefer the Siggi's whole fat yogurt brand, especially the Wild Berry flavor!  She is a girl after her mommy's heart.  However, if this helps anyone, I learned of 2 more brands that are rich in calories (~200!), but organic:
Liberte
O My Yog! by Stonyfield Farms

Another lesson we've learned is that a child with low muscle tone should have a high chair with good support.  Evie has a Graco Duoliner LX highchair, graciously gifted to her by her Auntie Alanna.


I started wondering if she would do better if she was able to sit closer to the table with us, so then I got a Fisher Price Deluxe Booster Seat.



But turns out that the feeding therapist noticed that Evie didn't get enough trunk support with this seat, so we switched back to the Graco Duoliner.  Oh well, we save it for when Evie is even stronger!

Evie is saying Dadada and Lalalala quite freely  now, but still no Mama!  I've been told to enjoy this while it lasts...

IFSP = I Find Some Problems, and Early Intervention

Ok, IFSP does not stand for "I Find Some Problems." It stands for Individual Family Service Plan.  An IFSP is a summary of services for a child who has developmental delays before the age of 3. This is to assess her eligibility for services, but she is automatically eligible because she has Down Syndrome.

Once she turns 3, she will get an Individual Education Plan (IEP), which is geared towards preparing Evie for school. There are an awful lot of acronyms in the world of special ed,  and I am still learning.

Basically a team from the Early Intervention program comes to our house, and they have a checklist of developmental skills to assess. She gets a score in each category at the end, and then they tell us how Evie is doing compared to her peers.   Last time we did this, she was 3 months old, the questions cracked me up, because she was only 3 months old and couldn't do most of the things listed (but who can?).

3-month old Evie (and Violet)

14 month old Evie!

This year, the IFSP did not crack me up, but I am trying to take it with a grain of salt.  We knew Evie would have some developmental delays, but it's still hard to hear scores assigned to my baby girl.  Hence the "I Find Some Problems." There are several categories:

Fine motor
Gross motor
Perceptive language
Expressive language
Social/emotional
Cognition

Her lowest is gross motor skills at a 5 month level, and her best is social/emotional at an 11 month level.  The grain of salt part is that Evie is not a fan of showing people what she can do when she's not feeling comfortable with them.  If she doesn't do something during testing, she doesn't get that point. The team was quick to reassure me that Evie is making tons of progress, especially since she had 5 months of dealing with 3 holes in her heart, so she couldn't develop as quickly when she was working so hard to just "be."

I am proud of Evie for getting this far.  She may not have extraordinary gross motor skills, but she is extraordinary in so many other ways to me!  Thank God for a great team of people (5 awesome ladies!) who come to our house each week to help Evie become stronger and more well-rounded. Seriously--it's actually pretty amazing that we have people who come to help me make sure that Evie is developing well.  I definitely wouldn't know to pay attention to all of these things as a first-time mommy!

Our awesome Team Evie! (and a grumpy Evie, and even Violet made it in the pic!)



Today's post brought to you by the letter R...and S...andV

After five days in the hospital for RSV, we are home!   I never knew what RSV was until we were in the NICU.  RSV stands for respiratory syncytial virus. Most kids get it by age 2 and get better in 1-2 weeks. But kids who are preemies or have respiratory issues are at higher risk of getting bronchiolitis or pneumonia. Evie got bronchiolitis. Hence the fast breathing that alarmed me and brought me to the ER.  Our other little friends with Down Syndrome had RSV, and I guess we joined the club. 

I'm pretty skittish about being around people with colds now. I used to not care, but now if I get sick, there's a high chance Evie will get it, and it is so sad when she is sick. I also do NOT want to spend more nights sleeping in the hospital, as fun as it is to see our friends there! 

So please don't be offended, friends, if you lean towards Evie and then I ask you if you'd like to use my handy Purell hanging from my purse. I'm protecting my young. :)

Here is Evie after her bath to cleanse her from all the hospital germs.  Clean and happy! 



Evie lost a pound during her hospital stay, which was a bummer since we were hoping to decrease the amount of food we have to give by g-tube.  But the good news is that if we can get her back on an upward trend in weight, then we will have a new Nutrition plan to help her to eat more by mouth. Here is Evie at a GI follow up and clapping for her eating log where we record how many bites she eats each meal! 


Back at the hospital, and almost meeting Julian Edelman

I thought that winter was almost over, and that we had made it without a stay in the hospital.  I spoke too soon...here we are in the cardiology unit of Boston Childrens for an unexpected stay.

Evie started with a cough and runny nose, and just went downhill over the next few days. She started breathing rapidly and was crying frequently. We were told that if her oxygen saturation levels went down to 90%, that we should go to the hospital.  

I called Pediatrics and the nurse said to go to the ER, and offered to call me an ambulance. Evie was smiling and playing with her toys, so I figured driving in was just fine. I emailed the cardiologist and he agreed that we should go in.  

Here's Evie looking at her new accessory, aka hospital wristband. 


No wait in the ER! Woot!

I was affirmed by the cardiology fellow for bringing her in.  They saw her oxygen saturation levels dip a bit while we were there, and that won her a ticket to stay overnight for monitoring. 

Evie enjoyed the ride in Mommy's lap when they had me sit in the rolling hospital bed to be transported to the cardiology unit. She had a big smile on her face and waved to everyone. 

Daddy spent the first night with her, and since she's still showing some moments of low oxygen sat levels, Mommy gets to stay tonight too.  Good thing we are veterans at this and it's more an annoyance than a big deal. 


The big difference this time is that we have a squirmy toddler on our hands. She is angry that she has an oxygen cannula up her nose, and that mommy and daddy aren't taking her where she wants to go. In fact, she's not allowed to leave her hospital room.  Boo bronchiolitis!! 

I could go on about the inconveniences of hospital life, but instead I will talk about the nice parts. 

1. Julian Edelman hands out pancakes to patients, apparently. The nurse told us AFTER he was gone past our room. I am still a bit peeved on missing out on a family picture with the Patriots player. 

2.  A music therapist. The neurology department has music therapists that go to the rooms and play music.  The guy who came in had the most soothing voice. Unfortunately, his rendition of Itsy Bitsy Spider was so slow, that Evie didn't feel like clapping for him at the end. But she was definitely more relaxed, and I was too. 

3. National pancake day celebration in the cafeteria!  For 2 bucks, I got 3 pancakes with all the toppings I could want.  They totally revived this tired mommy. 

4. A play mat (aka a bunch of blankets) in the floor with toys from Child Life. Evie was so sick of her hospital bed, so it was nice to give her some space to move around. With tubes everywhere, it's hard, but she likes it better for sure. 

5. All you can drink ginger ale.  I'm having an upset stomach, maybe from stress, but luckily there is all the ginger ale and apple juice that I can drink! 

6. A 14 foot extension to the oxygen tube.  I was annoyed that we couldn't take Evie more than a foot from her bed, and I said so.  The nurse then brought some extensions, and that made so much of a difference in moving around the room with Evie's oxygen tube. I should have asked sooner!

7. Lots of books. Child Life has lots of books for Evie, so it's nice having some different ones to read. 

8. All the baby food we need. Evie has a smorgasbord of flavors to choose from!  She is just getting her appetite back, so she will be able to take advantage of this a bit more soon. Today, sweet potato was the winner. 

9. Endless supply of oximeter sensors. Evie loves pulling off the little sensor that wraps around her toe. We had to ask for extra last year because she went through them so quickly. Luckily we have an endless supply here!

10. Awesome doctors. We are in the best Cardiology department in the country!  

For the praying type, Evie's oxygen levels drift down when she sleeps. We are on the lowest amount of oxygen, but she still needs it. Please pray that she won't need the supplemental oxygen and that we have physical energy amidst lack of sleep! 

Thanks to all of Evie's awesome fans! 





Evie's heart on Valentine's Day

Happy Valentine's Day, everybody! My heart is doing so well, that I have graduated from cardiology follow ups every 3 months to every 6 months!  Mommy and daddy are so ecstatic!


This photo is one of the photos from my photo shoot with Nicole Starr. She is our hero because she donated her time and talents to so many families with Down Syndrome. 

I would also like to wish everyone a happy Lunar New Year!  


Today, I am remembering all my buddies with Down Syndrome who tend to have heart problems and need to stay in the hospital for surgery.  I am blessed with a stronger heart now, which makes it an extra special Valentine's Day!

Lots of love, 
Evie

Contemplation of socks

Evie is a Houdini at pulling off her socks.  This makes me proud and annoyed at the same time.  I am so glad that she is super flexible and can reach her socks easily, even bringing them up to her nose.  But having to do a "sock check" whenever we are out somewhere is necessary, and my aging back does not like doing squats to pick up the sock while I'm holding Evie.


And now begins my search for the perfect slipper socks, and then the perfect walker shoes.

All the walker shoes that people so generously gave to us are too big still for Evie.  I evidently passed my genes of small feet on to her.  Side note: someone in middle school once asked me if my feet were bound in China.   I have tons of sarcastic remarks now to this, but all I said was a scathing "No." At this point, if someone asked me that, I would ask them if my feet looked like they were broken and then unnaturally curled into a ball.  But that is for another day.  For now, I am glad that Evie has cute feet, and I get to buy her cute shoes and save the gifts for later.

In Amazon's generous bounty of goods, I found 2 great shoe brands.  Evie is not walking yet, so she doesn't need huge treads on her shoes.  But she does need Velcro and/or long socks that she can't pull off completely.  Hence the victorious finds of 2 kinds of products:

Pink cowboy "boots"! 


  These slipper shoes really are clever. They are comfy, warm, and Evie has not been able to pull them off yet.  We are big fans.


For Evie's next foray into the snow, I got her some little pink boots with fur inside. They come in different colors. The reason these are so great is because they have velcro to tighten them so she can't pull them off as easily (although  not 100% Evie proof in recent testing), and they are warm enough to step in the snow a bit.  Can't wait to use them! (But then again, I could do without more snow...)


This was quite a frivolous post.  Sorry if you were looking for something deep about Down Syndrome.  I will say that I think Evie might not be the only one with Down Syndrome who has really small feet for someone her age.  Many kids with DS are smaller in stature, and can have shorter limbs.  Evie actually has pretty long limbs though, and Daddy secretly hopes that she will like playing and watching basketball.  She is also rather tall, and measured in at 29 1/2 inches today at the hospital. Here's to our pink cowboy boot-wearing basketball player!

Stay warm, everybody!


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