Beauty isn't just at a fashion show

I was pretty excited to go to the Down Syndrome Clinic's Fashion Show today.  We had a local radio host, 3 photographers who donated their time, a buffet lunch, and a rockin' fashion show lined up.  Kids and adults of all ages were there--grandparents, aunts and uncles, parents, friends, and the rock stars themselves, the kids with that extra copy of the 21st chromosome.  

There was a toddler with a royal blue ball gown and a tiny silver tiara in her hair.  There was a chubby-cheeked infant boy sporting a preppy navy dress shirt and shorts and a summery tan fedora.  A 12 year old boy made us ooh and aah with his skills with a hula hoop and a spin ball.  He wasn't that good--but his happy spirit and attempts to make the audience laugh made him spectacular. A group of elementary-aged girls in a dance troupe performed for us, and their team member with Down Syndrome, while she didn't keep up exactly, showed that she was fully included and appreciated.  The teens who modeled either hammed it up or shyly came on stage with their siblings, who urged them to take their moment to shine.  The final fashion show participant, a popular 22 year old guy with a tie, showed off his Ric Flair moves and got wild applause. 

A toddler announced as a girl who likes guacamole....who doesn't? (Identity protected by the very bleached out photos I took)


I got a little teary each time a child came on stage.  No matter who was on stage, the crowd went wild.  Every kid who took the stage deserved to know that they were beautiful.  Some have already been called names, and others have hit that moment when they realize that they are different from others.  As parents, we tell them that they are beautiful, but in one word, someone can strip that away.  My daughter Evie is only 3, and thinks she's the center of the universe, but one day, someone may tell her that she looks funny or actually use the "r" word.  We need more events like this to show children of all abilities and backgrounds that they are valued and worthy of love and appreciation.  The more that we spread awareness that children with disabilities are beautiful in every sense of the word, the less ignorance there will be in this world.  

A crowd of beautiful kids. 


Frank Lloyd Wright said " If you foolishly ignore beauty, you will soon find yourself without it."  If we ignore the beauty in those with disabilities, we miss out on the beauty that they can offer and thus miss out on how they can enrich our own lives.  I'd like to issue a challenge to anyone reading this--find someone with a disability this week and tell them that they are beautiful, or point out something wonderful about them.  I promise you that the reward will be immeasurable for them and for you. 

Evie's Heart Update ( and How to look like an idiot in front of your child's cardiologist)


Evie's 2-year follow up with Cardiology was today.  She had open heart surgery at 5 months old to repair an ASD and VSD, and since then, her heart has been strong, and her pulmonary hypertension has resolved.  I celebrate her heartiversary every year to remind us of how far she has come.

Taking a 3-year old for an afternoon of an EKG, Echo, and Cardiology follow up takes a lot of energy.  Especially when said 3-year-old does not want anyone to touch her.  "Evie, these are stickers!"  Evie did not think that EKG leads and stickers were fun at all.  She would not stop wailing until we took them off.

The Echocardiogram part was a bust.  The technician gave up when Evie start flailing around, even though I had her arms in a lock and my legs around her legs, while my husband tried to hold the iPad and hold her legs as well.  Evie's look of blame when she twisted around to ask me for help was an arrow through my mama heart.

We finally got to see our fave cardiologist, whom we credit with getting us out of the NICU when Evie was 6 weeks old.   "Didn't I tell you the G-tube was a good idea," he asked as usual.  We always agree.  While she still has the G-tube and is working on feeding issues, it is way better than living in the hospital, waiting for her to gain weight.  (I hope this helps anyone who is trying to figure out if a g-tube is a good idea. YES. If it gets your child and you out of the hospital environment after being there for weeks!)

When it came time for him to listen to her heart, I had a brilliant thought.  "I'll hold the stethoscope bell for you and maybe she'll be more cooperative."  He agreed, and then I eagerly applied the stethoscope to her back.  The only problem is that you can't hear someone's heart from their back.   He gently said, "but you might want to put it on her front side or I can't hear."  Face palm.  I'm so used to people listening to Evie's lungs, that I just put it there!  I will be cringing about this for days.

Before the cardiologist tried to listen to Evie's lungs...I mean heart
But hey! Evie's been cleared for 2 more years!  We have reached the phase in toddlerdom where specialists just toss up their hands and say, "Well, she's 3.  We'll just wait a couple years until she is more cooperative during exams."  I am looking forward to that day.  She can have all the prizes she wants.

In addition to being cleared for 2 more years, we reached a couple of tiny but cute milestones today.  Up until today, Evie has never paid attention or cared about the fish tank at Boston Children's.  The other children would come and ooh and aah, but she always turned away.  Today, she pointed at the fish and followed them with her eyes.  I was pretty excited.


Another milestone was having a diaper accident and being embarrassed about it because she got her favorite armchair dirty.  This might seem silly, but I am so proud that she shows awareness of the consequences of her actions.  She is really so smart. 

Today we got to say that we took Levothyroxine off Evie's med list.  For some kids with Down Syndrome, they may have hypothyroidism and then be able to wean off at age 3.  This seems to be Evie's case so far, as she has gone a month without Levothyroxine and had good lab results.  This is the last medication left from her infancy!  The rest is just probiotics and stool softeners!  Go Evie! 

On the way out of the hospital, we went by the Prenatal Fetal Cardiology Unit.  When I first had to go there during my pregnancy, all I could think about were the diagnosis of Down Syndrome and that my baby had holes in her heart.  3 years later, neither of these things turned out to be so bad.  My daughter is perfect, and her heart is strong.  I thank God for bringing us through those times, and for making Evie stronger.  Not cooperating during exams is a good thing!  She is feisty and strong! 

Mommy, what are we doing?


Adapting to travel with a non-verbal tubie threenager.

If you don't know what a "threenager" is, the term refers to a 3 year old who already shows signs of being a teenager.   "Evie, you just took Mommy's seat.  Can Mommy sit down and get out of the airplane aisle?"  [Evie grunts and shakes head no.]

As Evie gets older, we run into new challenges that stretch us in our ability to find creative ways to help Evie adjust to new experiences.  The latest new experience was a 6 hour plane trip from Boston to California and back, with the fun stuff in between.

Here are some new insights we learned about traveling with a non-verbal, g-tube feeding, non-walking 3 year old who is curious, feisty, affectionate like a clingy koala bear, and only bribable by iPad time and hugs.

1.  Food transportation.  Evie eats blended food orally, so each week I prepare a variety of frozen foods, blend them up, and freeze them in cubes.  Transporting these for a 6 hour plane ride and then 4 hours in the car (darn LA traffic!!) calls for some forethought.  Here's our food packing list:

  • frozen blended cubes, enough for 3 meals a day, packed with good ice packs in a small carrying cooler
  • plastic kids' bowls with lids
  • feeding spoons
  • Duocal in a plastic container marked Duocal, so that TSA doesn't think we have drugs
  • Miralax in a plastic container marked laxative, for same reason above
  • Dr. Brown's bottles with tight travel lids 
  • Pediasure Peptide bottles (2 per day=10 bottles)
  • emergency food pouches
  • Liquid multivitamin in small plastic container
  • Culturelle for Kids packets
  • Bottle of water
  • 2 g-tube extensions (1 right angle, 1 bolus)
  • 1 adapter for new-style g-tube
  • 1 syringe full of Benadryl (5 ml for a toddler)
  • paper towels folded up
  • 1 Doidy cup (tilted open cup for easy drinking)
  • emergency g-tube button replacement kit



2.  Toddler transportation.  Small foldable stroller (we have a Maclaren) and car seat.  The best thing that ever happened to us was this rolling car seat holder.  I can't tell you how many people have commented on the cool factor of this thing.  Worth every penny if you have to lug a car seat.  It carries 2 huge duffle bags really well as you trek through the airport.



3. Drugs and Ear tubes.
I don't actually know if the ear tubes helped Evie that much.  She never had much trouble with pressure on airplanes, but they gave her ear tubes anyway because she had fluid in her ears so frequently.  I hear from some friends in the DS community that ear tubes worked wonders for their kids.

Benadryl is a wonder drug...unless you are Evie.  I really don't know if it helps her. I suspect that sometimes it makes her more hyper, which is a common side effect.  We gave her Benadryl through her g-tube before the flight boarded, but halfway through she got REALLY cranky, and I started to question if Benadryl had made things worse.  I am told that Tylenol could work too--I will try that next time (there isn't going to be a next time for a long time! I need to recover!).

This is Evie's expression when she was asked to take a picture when she arrived in California. Threenager.


4.  Church.  Most people would think that peppy rock music at church is cool, but not Evie. As soon as we walked in, the loud noise in a big room of strangers and neon lights flashing were visual and auditory overload.  And the only seats available for so many of us was in the middle of the room (we usually sit in the back). Not to mention that there was a guest preacher who had people clapping whenever he said something remotely good, which set Evie off on another fit of terrified paralysis and hiding in my shirt. I put a sheer scarf over her head to try to help, but she was just too scared.  She wouldn't have accepted earphones either.   Perhaps Evie is showing signs of preferring a more liturgical church setting--one in which there is quiet music and no clapping. :D

5.  iPad.  Evie got so much iPad time on our travel day to California, that she got tired of the iPad.  Yes, that is possible.   Thankfully, she now knows how to pick her own apps, so she entertained herself for quite awhile.   A big win this time--she allowed me to leave her bunny earphones on, so that the rest of the plane didn't have to hear "We are the Dinosaurs" over and over.

Evie, can I have my seat back?  No. 
A big thank you to my cousins who gave Evie a small machine that makes funny noises.  Evie now occupies herself by repeatedly choosing one button out of all 12: the splat sound that sounds like someone is farting.  She presses it, giggles as it plays, and then bursts out cackling after the fart sound.  Then she looks to see if we are laughing too.

6.  Cranky pants.  Evie refused to eat dinner on the plane, but started squirming and crying like her tummy hurt.  This is when I wish I could just throw cookies in her hands and see her joyfully eat junk food treats.  Instead, we had to force her to let us attach the g-tube extension so that we could pump some formula into her so that her stomach wouldn't hurt.  After that, she calmed down, because of course she was less hungry.  She knows the sign for "eat," but still hasn't figured out to use it consistently and link it with her body cues for hunger.
I packed her all sorts of activities, but she just wanted to read the map. 
7.  More cranky pants.  I had cranky pants too.  With the ever-present bad weather in the northeast, our plane was delayed until we were landing at 2 am in Boston.  Evie started taking cat naps on top of me, waking up and arching her back (she is very tall now, it takes your whole body to brace her), flopping around to find a good position, and then requiring me to sing Amazing Grace in her ear until she fell asleep again.  Of course, there was turbulence, so we couldn't walk the aisles.  The flight attendant nicely told me that it's better for her to scream and be safe.  At that point I wasn't so sure.  I was willing to chain myself to the galley somehow if I could just rock her while standing up.   My husband rocked her as well, but she is in the clingy phase, and only wants Mommy when she is half asleep.  This made Mommy have cranky pants.

8.  Full-out crying the last hour of the plane ride.  Abruptly ended by the sudden idea to put my phone in front of her face to show her videos of herself.  Instant silence and angelic cooperation.  Why didn't I do this sooner?!  

3:30 am, we are finally asleep.  Thank you, Jesus, for our nanny, who is coming in 7.5 hours to relieve us.  I may kiss her when she arrives.

PS, I love my daughter. I just need a break.



I'm not a mind reader

Dear Evie,
As much as I'd love this superpower, Mommy is not a mind reader.  When you are sitting in front of me asking for music, I do not know what song you are thinking of in your head.  I ask you if you want "The Cat Came Back,"  "Rocketship Run," or "Stand Up Sit Down," but you just growl at me and get frustrated that I can't read your mind. 

So I am doing something about it. 

Love,
Mommy


I am making my own personalized Evie PECS board.  PECS stands for Picture Exchange Communication System.  It is very useful for helping nonverbal people to communicate.

Evie has matching communication books made of PECS pictures at school and at home.  But when it comes time for what song she wants to be played, the field is open.

Evie's school provided a Communication Book for home to match her book at school. It even has pictures of each of her classmates and teachers and therapists!

Evie's song menu choices in her school communication book.  Note the dinosaur sticker I added because there was no choice for "We Are the Dinosaurs" by Laurie Berkner.

We Are the Dinosaurs is a crowd favorite, and it's not a choice at school!  So it's time for the big guns.  Enter Evie's song menu.
Laurie Berkner and Patty Shukla. 
I ran out of songs I really wanted to hear over and over again, so added favorite books and activities.
Some Rachel Coleman, nursery rhymes, Bible songs, books, and activity choices
I'm putting these in sheet protectors to use until her song selections change.

If you're interested in making your own, here is the link to a free template: https://pecsusa.com/free-materials/.  Under Worksheets and Checklists, there are two differently-sized options for PECS grids. In preparation, I googled each song that Evie liked and found an image that she would recognize for each song.  I saved them all to a folder, and then opened the template in Word and inserted a picture in each square.

Hope this helps someone else cut down on the need for mind reading!


Evie's Favorite Blends

This post is dedicated to Evie's first boyfriend JJ, who lounged next to her on the carpet as they g-tubed peacefully together at the same time at the ripe age of 6 months.   He has moved onto greener pastures and now tries to sit on every woman's lap possible.  At the age of 3, he is a lady killer! We love you, JJ!  <3

I wanted to share some of Evie's favorite blended foods.  It's a tough balance when we have to fatten her up, but I have to make blends that taste good by mouth too.  Whatever she doesn't eat orally is thrown in a blender with some formula and put into her tummy by g-tube.  She eats 3 meals a day orally and gets supplemental formula/blends to help her with her growth rate.



We just had our most successful Nutrition visit yet since trying to lessen the amount of Pediasure!  Evie doubled her growth rate from 5 grams a day to 10 grams a day!  I wanted to take a picture.  Hearing "well done" at this visit is enough to make a tubie mama cry out of sheer joy and exhaustion.

So here are some of my favorite blends that taste yummy and feel yummy by mouth or by g-tube!

Beef Bolognese Ravioli
Ingredients:
1 package of Trader Joe's fresh Beef Bolognese Ravioli, cooked
1/2 package of Trader Joe's buttered mixed vegetables
3-5 T of avocado oil
Heavy cream, enough to go 3/4 up the height of the food already in the blender

Blend everything together well, depending on child's tolerance of textures.  Freeze in cube trays for later if desired.  Defrost 2 cubes for 35 seconds in microwave and add 1-2 oz of Noosa yogurt with Duocal and avocado oil and mix together.

280 calories in 1 cup of the ravioli!


Mac and Cheese

1 box Annie's mac and cheese (made in Instant Pot in 2 min!), made with heavy cream instead of milk and add 2 T of butter
1/2 package of frozen sweet peas, thawed
fresh spinach or kale as desired
heavy cream, up to 3/4 of the height of the food already in the blender

Blend everything together and freeze as desired.  As always, add 1-2 oz of Noosa yogurt (Evie likes the honey flavor) and mix with Duocal and avocado oil.  

270 cal per serving!
Overnight Oats

Soak 1 cup of old fashioned oats overnight in a square tupperware full of heavy cream.  Add sliced bananas or whatever other mix-ins you like in your oatmeal to soak overnight as well.  You can cook the oatmeal or just blend as-is in the morning.  Add avocado oil and Noosa honey yogurt generously in the blender with the oats mixture.  Add a splash of cinnamon.  Blend as desired.  You can also add in a a pouch for flavor. We use Happy Tots Super Morning apple or blueberry blends for flavoring.  This one impressed our Nutritionist with how we worked in the heavy cream for more calories.

Spinach Tortellini

Ingredients:
1 package of Trader Joe's Spinach Tortellini, cooked
1/2 package of Trader Joe's buttered mixed vegetables or frozen sweet peas
3-5 T of avocado oil
Heavy cream, enough to go 3/4 up the height of the food already in the blender

Blend everything together well, depending on child's tolerance of textures.  Freeze in cube trays for later if desired.  Defrost 2 cubes for 35 seconds in microwave and add 1-2 oz of Noosa yogurt with Duocal and avocado oil and mix together.

Sound familiar?  That's because it's the same recipe as the one for Beef Bolognese Ravioli!  I love Trader Joe's!  I'm planning on doing the same with the frozen Chicken Alfredo from Trader Joe's!


Signing up with DDS

I'm not talking about signing up with a dentist here...this blog post is about the Department of Developmental Services.  The DDS is fully funded by Social Security and is meant to create partnerships and opportunities for people with intellectual and developmental disabilities to "participate fully and meaningfully in, and contribute to, their communities as valued members."

The way I understand it is that DDS is more to help adults with disabilities to engage and function and contribute to the community.  So why are we signing up little 3-year-old Evie?   I'm still figuring that out. I hear that getting into DDS now can help to make the transition easier as she becomes an adult.  The questionnaire to apply was already quite length for Birth-5 years old, so I imagine that it's even harder answering the questions for a teenager.  We can also be connected with the local ARC to have more resources for Evie.   When Evie is older and transitioning to more independent adult living, she can have a DDS worker help her to learn further skills to do so. (My more experienced DS mama friends, feel free to comment!)

I wanted to blog about our DDS interview and the process so far (This is in Massachusetts, so not sure if it's different in another state). 

I sent in the lengthy questionnaire about Evie's birth and medical history along with a copy of her IEP back around Thanksgiving, and heard back from the eligibility coordinator during the first week of February.  She came to our house today and brought 3 packets full of questions to ask me.  She actually did not need to do anything with Evie; she just needed to see Evie to confirm that she exists and seems to have a disability.  The rest of the time was to answer questions about Evie's development. 

We went through medical history briefly, demographics, and safety issues.  She then went through each category of development, like Receptive Communication, Motor Skills, Social Skills, etc.  I was pleased that Evie was an "All the Time" for questions like "Can she identify at least 10 alphabet letters" and "Can she follow 2-step instructions."  There were other skills like being able to draw shapes other than a line or to recognize her own written name that I could not say yes to.  But all in all, I felt proud of her accomplishments. 

The 30-minute interview ended, and I asked her what was next.  She said that while there are 5 interviewers, there is only 1 psychologist, and he has to review all of the applications.  So she estimated that we would not hear back for another 4 months.  I expect that we will hear that we have been accepted into the DDS system and then they will connect us with our local ARC and we will go from there.  If Evie needs certain augmentative communication devices or other assistive devices, they may be a good resource. 

Hope this helps someone know what the process looks like for applying to DDS!  

Why Valentine's Day cards are extra special to me

This year was Evie's first Valentine's Day as a preschooler.  I found out that her class wasn't swapping individual Valentine's Day cards, but that there was an option to put them on the cubbies for each child.  I've been waiting for a very long time to be able to do Valentine's Day cards for my daughter, and darn it, it was going to happen!

This is actually for a friend, but shown here for demonstration purposes.  What's inside?  Party sized Playdough!  Envelopes and stickers from jane.com.
I want to share why Valentine's Day cards are extra special to me.  Ever since little Evie was at just 10 week of gestation in my womb, I had to process a lot of fear about what it would be like to have a child with Down Syndrome.  One of those fears was that she wouldn't have any friends.  

Yesterday, when she came home with a pile of Valentines, I was pretty excited to go through them.  The ones that unexpectedly most touched my heart were the ones that said Evie's name on them.  My daughter was thought of and included.  Someone took the time to write her name personally (and when you're 3, that means the parents did).   I completely understand that getting valentines done is just another part of parenting when you're busy.  But I want to share how much it meant to me that they took the time to individually address these cards.  They spoke to my mama heart and were just another piece of evidence that Evie will be ok in this big world.  

A sample of some homemade cards addressed to Evie
 Evie, on the other hand, was most fascinated by the holographic My Little Pony valentine.  Oh well.


Beauty isn't just at a fashion show

I was pretty excited to go to the Down Syndrome Clinic's Fashion Show today.  We had a local radio host, 3 photographers who donated the...