Your weekly Down Syndrome Awareness Month Digest

I'm having some trouble posting to so many places, so here is a summary of Days 7-14!  Thanks for all of your encouraging comments on this month of DS facts!  It makes it worth the effort! 💙💛

Day 7 DS Awareness: Embarking on the DS journey can be a roller coaster. It is our “framily” who keep us going when life throws some unexpected side trips, and who cheer with us during the many small victories. Thank you to everyone who has supported Evie for the Buddy Walk this year! We love you and appreciate you!  


Starting out the Buddy Walk! Evie was overwhelmed by the loud cheering at the start line. 


Day 8: An estimated 90% of moms with a prenatal DS diagnosis will choose to terminate their pregnancies. When I first found out our diagnosis, I had to search hard in general literature to find anything positive about having a child with Down Syndrome. Increased availability of non-invasive blood tests that can identify chromosomal defects could potentially eliminate people with DS in certain countries. For me and Evie, our goal is to raise awareness and show the joy in being a homie with an extra chromie! 





 Day 9 DS Awareness: Since the 1970’s, public schools have had to by law provide a free and appropriate education to individuals with Down Syndrome. We already see the benefits of this, and evie is only in preschool! And apparently she likes chess! Thanks for supporting public school education. They are pivotal for our children and our future,no matter who they are or where they are.




DS Awareness Day 10: Being included is priceless. Evie is fully included in her preschool class with appropriate assistance so that she can participate. These include an aide for safety, a special chair for support, and an electronic communication device (NOVA Chat). Evie loves being included, and just blossoms when she goes to school! Scroll for your daily evie pic!





DS Awareness Day 11: Babies with DS often spend some time in the NICU for various reasons. Evie was admitted for heart defects, pulmonary hypertension, and failure to gain weight. Our NICU nurses were lifesaving in so many ways. Massachusetts is currently voting to restrict nurse to patient ratios. While I strongly support having quality care and safe boundaries (Evie’s nurses in the NICU had two patients each), the way that #1 is written would likely be more costly and impact healthcare access in a negative way. Imagine going to the ER and being told to wait or to try another hospital because they have reached capacity. I don’t know about you, but when I go to the ER for help, I like to be seen! Safe limits are important, but with such a sweeping change that gives only 37 days to enact, they need to write the regulation with more care for consequences.  Evie says, Vote No on #1!



Evie's first bath

DS Awareness Day 12: People with Down Syndrome are not always happy, contrary to popular belief. They have the same emotions as everyone else. And sometimes they are sad that Mommy is testing out Halloween outfits and the skirt is so poufy that it’s scary.



DS Awareness Day 13: Some kids with DS take longer to speak verbally. It takes a lot of coordination to move the tongue and oral muscles correctly, and their tongues tend to be bigger for their smaller facial structure. Evie can say a few words, but gets frustrated when we don’t understand her utterances or signs. She started an augmentative communication device called a NOVA chat this week. So far she is very pleased with it. We are getting used to carrying it around everywhere, but so far so good.




DS Awareness Day 14: People with Down syndrome attend school, work, participate in decisions that affect them, have meaningful relationships, vote and contribute to society in many wonderful ways. The book that Evie is reading in the photo is called “I Love You for You.” It teaches various animals that they all have their own unique traits, and each one is special. This message is especially important for Evie, but I believe all children (and adults) need to know that each person has their own unique abilities and contributions to the world. When we set apart others because they are different, we ALL lose out. 


Day 6 of DS Awareness: Evie is smart, and flash cards!

DS Awareness Day 6: Before I knew anything about DS, I thought that my child would not be smart. I could not have been more wrong. Evie continues to show me on a regular basis how smart she is. She’s asks to do flash cards at least three times a day. She knows all of her letters and her basic numbers. She can tell me which words start with a certain letter, and she’s only 3. #nolimits #evietheextraordinary


Our favorite flashcards were passed on to us from another family on the DS journey.  They are awesome because of their large size and the sign language pictures on the back of each card!
I don't see them on Amazon, but they are at babysignlanguage.com. This is the reference book from the same brand:


 Our other favorites are:




Evie also loves treating this Eric Carle matching game as flash cards (they make a great gift!). She is working on learning to make pairs to match the animal pictures.



Happy flash carding, and Happy long weekend!

Days 4 and 5 of Down Syndrome Awareness! Reading books and Types of DS!

DS Awareness Day 4: When Evie was first born, I couldn’t even think about reading books to her amidst all the medical issues we were dealing with. But her daddy lovingly read books to her from her first week of life, and it has paid off. Evie loves books and has developed very strong opinions about which ones she wants to read. Yet another example of #dontlimitme and how Evie can do anything she sets about to do. #evietheextraordinary




DS Awareness Day #5: There are 3 types of Down Syndrome. There are three types of Down syndrome: trisomy 21 (nondisjunction) accounts for 95% of cases, translocation accounts for about 4%, and mosaicism accounts for about 1%. No matter what type, the preferred way to refer to a child is not as “the Down’s kid,” but by their name and mentioning that they happen to have Down Syndrome. Evie is that feisty little girl with the button nose and dimples, who has a passion for music and swinging. #evietheextraordinary



DS Awareness Day 3: Why Walking is so Hard

DS Awareness #3: Evie’s getting so good in her walker, that she surprised everyone in gym class by taking off to go tag her classmate during a game! Here’s a #tbt to the spring when Ms. Sassy Pants took off when I told her it was time to go home. She’s overcoming her hypotonia (low muscle tone) every day! With low muscle tone, walking or standing for long periods of time is hard work! #evietheextraordinary



DS Awareness Day 2: Why Doesn't Evie Talk Yet?

DS Awareness Day 2: Why doesn’t Evie talk yet? Kids with DS have lower muscle tone, and how that affects speaking, walking, and eating varies widely. Evie has super low muscle tone, and this includes her oral muscles. She is learning now to move her tongue and says B’s, D’s and G’s pretty well. She loves practicing funny sounds with mama. When a good song comes on the iPad, she now makes noises like she’s singing along. Songs about daddies especially get her going on a Dada monologue.


Down Syndrome Awareness Month!

It's Down Syndrome (DS) Awareness Month!  On my 3rd year doing this, my goal is for the facts that I post to sound familiar to friends and family. I want you to think "I already knew that," because you learned from me before!  I want you to be able to share what you learned with other people you know, so that DS becomes a more acceptable part of our culture. 

What is Down Syndrome?  Individuals with DS have an extra copy of the 21st chromosome.  They are more similar to everyone else than they are different.  Before the 1980's, the majority of people with DS were institutionalized.  It was standard procedure for a doctor to advise parents that their child was less than human, would have numerous medical issues, and would be better off in an institution.  Evie is our gift and I am so glad that we are not missing out on the joy that we have with her in our lives. 

I hope you enjoy this video about a woman with Down Syndrome who was institutionalized for 35 years and then became a renowned artist.

https://themighty.com/video/this-artist-with-down-syndrome-was-institutionalized-for-35-years-now-her-work-is-world-renowned/

Little newborn Evie with a bowling ball head--I was definitely keeping her!

Mommy Achievements and How To Support Evie

Guys. I had a huge breakthrough today. I actually did something the feeding therapist told us to do at home.  She had suggested putting food on Evie's tray to help her feel comfortable with finger foods around her, but to actually remember to do that and implement it is another story (along with all the other therapists' suggestions for various parts of her body).

This Labor Day weekend, I found myself with time to focus on her eating with the intent of being creative.  We started lunch time with a canister of star puffs. I told her I was putting 10 stars on her tray, and because she loves counting, she actually watched me do it. Then we proceeded to eat her pureed mac and cheese while singing the Hokey Pokey.  (If you want to know alternative body parts to sing to entertain yourself during the 20th verse, I'm happy to share.)   It doesn't sound like much, but Evie didn't cry or throw her star puffs, and was willing to touch them and put them back in the canister.  She even picked one up to put in my mouth, and chortled when I chewed it and said how good it was.  For a kid with a feeding aversion, this was a great meal.

Of course, then I turned my back and she took the whole canister of star puffs, dumped them on the tray, and reveled in the feel of many star puffs.   If you think this was a bad thing, it wasn't.  If she wants to play with any food at any time, it's a victory.  So we played some more in the fabulous world of star puffs.  

Finding this moment in time where we have nowhere to be, no agenda, and just time to work on star-puff-touching is a moment that caught me off guard.  Sometimes life is busy, running to school, work, therapy appointments, trying to help Evie to walk more, eat more, and talk more, and it feels endless. But a moment like this in which we were just enjoying the star puffs was priceless.
A moment when Mommy has given into bribery to get Evie to eat


Evie is going back to school on Thursday.  It's been a good summer, mostly full of summer school, but still full of summer activities and more time together as a family.

Cape Cod life.

Evie has been missing the routine of school, and I'm hopeful that she will make tons of progress in the fall in every way.  At our recent appointment to check Evie's ankle braces (SMO's), the orthoptist mentioned that maybe next time he sees us, Evie will be walking.  He said that he could see how much progress she had made in 3 months by the way she was walking with assistance.  I told him that if she is walking by November, I will bring him cake and throw a party in the exam room.  Here's hoping for a party!

Walking with assistance!
The fall also brings a key event that allows us to raise awareness about Down Syndrome and to include our family and friends in supporting Evie.  Evie's Extraordinaries is up for the 2nd year in a row!  The money raised from the Buddy Walk on Sunday, Oct. 7 will be given to the Massachusetts Down Syndrome Congress.  The MDSC has been instrumental in helping us and many other families with prenatal and postnatal diagnoses of Down Syndrome, as well as providing events for support like baby sign language classes and new family socials, and workshops for learning about the scary IEP process.  If you would like to walk with us or support us, the links are below.  It's a short walk around the lake in Wakefield, MA.

Here's the link to join our team or donate: http://mdsc.kintera.org/faf/donorReg/donorPledge.asp?ievent=1179869&lis=1&kntae1179869=EB5146D47EF5459EAFB73ABC6CB7DE40&supId=449041033 Choose the Register Here button, and then Register Multiple People option. From there, you can choose Join Team, and find Evie's Extraordinaries.  Let me know if you have any trouble!
The event information is here: http://mdsc.kintera.org/faf/home/default.asp?ievent=1179869
Anyone who walks or donates at least $30 will get a special edition 2018 Evie's Extraordinaries T-shirt!




Hope you all have a pleasant start to your fall!

Summer School and Evie's G-Tube Update

When I was growing up, I thought summer school was only for children who didn't do well academically.  Now that I have a child with special needs, I'm learning that summer school can mean very different things.

Evie just finished her second day of summer school.  To her, we go in a different entrance and there are new teachers and new classmates.  But as soon as she saw her new classroom, she went right for the blocks, and I knew she would be just fine.  

If a child has an IEP, it's not an automatic thing that they will qualify to have Extended School Year (ESY) services.  It has to be apparent that the child will regress without school, or take a long time to relearn certain skills due to lack of school during the summer.  Some kids qualify for therapy sessions during the summer, and others, like Evie qualify to go to the summer school program for 1 month.  There was no question that Evie qualified for ESY when the IEP was first written--I didn't have to fight for it at all.  She proved we were right when February vacation came and she decided that she forgot how to swallow her food.  Here's a good explanation of who qualifies: https://www.understood.org/en/friends-feelings/child-social-situations/summer-camp-summer-school/extended-school-year-services-what-you-need-to-know

Evie goes to preschool on Mondays through Thursdays with 3 and 4 year olds from 9 am to 12 pm in the classroom next to her regular classroom.  She has a different teacher and a different 1:1 aide, both of whom are very nice, and still send home a note at the end of the day.  This summer teacher has 30 years of experience with g-tubes, which really impressed me.   The school day is very similar to the rest of the school year, and she still gets her PT, OT, and Speech.  
Sitting in circle time with Evie's 1:1 aide
What else has Evie been up to?
Evie has been making huge strides in her feeding.  She starts her home feeding therapy with some play time.  On a given day, I set out Nutella, jello, hummus, Bamba snacks, and veggie sticks, and the therapist encourages Evie to touch any of it without being asked to eat it.  The word "eat" makes her very defensive because she doesn't feel safe about having food in her mouth.  Over the past month, Evie has started becoming more adventurous in touching food, and tonight was the best yet.  She dug her hands into the Nutella and smeared it all over her hands and arms and face.  It was awesome. We couldn't cheer because that makes Evie cry, but we jumped up and down inside. 

If you're interested in what spoon and bowl we use, here they are: 


I have about 5 different kinds of spoons--the maroon spoon, the one that looks like a leaf, the shorter spoons, the Kizingo spoons, and flatter Munchkin spoons.  Ironically, the first type of spoons I got were the ones that we went back to, because Evie has a smaller surface area that needs to be rotated to get into her mouth.

These bowls are really helpful for us because I prep food for Evie by taking 2 cubes of frozen blended food, 1 oz of Noosa yogurt, 1 scoop of Duocal, and 1 teaspoon of avocado oil and cover it to store and thaw in the fridge for the next day.

I've been asked several times if Evie still has her feeding tube.  The answer is yes.  Ask me when she's 5 if she still has her feeding tube.  My answer may change by then. But this is a long journey, as you can see, since we are just asking her to touch food and she is hesitating.   But we are making progress!!  In today's session, Evie put the spoon with her blended puree in her mouth, rotated the spoon to get her lips around it, and ate a solid bite all by herself!  Up until today, she just went through the motions of touching the spoon to her mouth, but she actually has started to understand that she needs to close her lips over the spoon to get the food.  Her reward is usually Mommy making animal noises as I read the "I Can Roar" book by Arthur Ashe.  


Nutella all up in here (Mommy wanted to eat Evie)
 We are excited to see what the rest of the summer can bring.  I would love for Evie to go back to school in the fall with feeling more confident in standing on her own. That would be HUGE!  In the meantime, Evie has been enjoying excursions like the playground and Jump On In, an indoor inflatable park.

Wishing everyone a happy summer!  Buh-bye from Evie (she is actually saying this verbally now!)! 



Smart girls finish rich...financial planning

I once bought a book called "Smart Girls Finish Rich" by Suze Orman.  I don't remember at all what it said. And I'm not rich yet, so I'm not sure the book worked.  Once we had Evie, we knew off the bat that we would need to plan ahead financially for her, and more than the typical situation.  We hope she will be able to live on her own as an adult, and hopefully have a job (as a rock star or a model--let a mom dream).  But we need to make sure our little girl will be provided for.

I asked on our awesome Facebook group for local families with kids with Down Syndrome, and got some great recommendations about places to call.

We picked an advisor that was two towns over, but mostly because this financial group is specifically equipped to help families with special needs. One co-founder has a son with Down Syndrome, and the other has a brother with special needs.  Back when they needed help, there wasn't much out there to advise them on how to prepare for their loved one. So now they have written a book.  I got mine autographed. :)



We met with Alexandria, who has a brother with Down Syndrome (and whose father wrote the book). She gets emotional and so happy when she talks about her brother, who is now in his 20's.  She is also very active in the Down Syndrome community and believes in what she is doing.  After we met with her, she presented us with an individualized financial plan for our family from now until Evie is an adult. This timeline goes along Evie's educational career and helps us take the right financial steps along the way.

We were very impressed with the service provided to us.  As a result of our visit, we were able to discuss issues such as life insurance, setting up a will, and the pros and cons of an ABLE account.  She gave us a list of attorneys who were more experienced in helping to set up special needs trusts, and we were able to set up our will as well.

I highly recommend meeting with a special needs financial planner if this applies to you--it helps to give you an overview of what to expect and how you can plan ahead.  I had no idea what to do at all, and Alexandria set us at ease and walked us through what we needed to know. For those of you north of Boston, Shepherd Financial is worth considering!

And now to find someone to childproof my home... just kidding.




Evie's Memoirs: Finishing a half year of Preschool

Hi everyone!
My mommy is too busy to blog, so I have decided to blog for myself today.

I had my last day of preschool last week, and I am enjoying vacation.  I wanted to tell you about my thoughts on preschool since starting in January.

It's awesome.

When I arrive, I meet with Miss Amanda, and she helps me walk in to the classroom. As soon as I walk in, people say hi to me.  My friends C and F are especially good at saying hi to me, and make me feel really special.  In fact, they have been greeting me at the car, ready to hold my backpack and hold the door open for me.  

After I go inside, I put my name on the attendance board and then join in free play.   On Mondays, I do therapy with my speech, PT, and OT therapy ladies, and they usually come into the classroom and hang out with me.  Sometimes we go and walk down the hallway with my walker. I'm getting really good at that.

When I walk down the hallway, the older kids know my name and say hi to me.  I guess they recognize my purple walker.  They cheer me on, which is nice.  I went to the park the other day and a bigger kid said "Hi, Evie!"  My nanny had no idea who she was, but apparently she is impressed with how popular I am.

Do you see the pizza sponge? So cool!!!

I love playground time.  I used to cheer for the other kids going down the slide, but now I go down the slide with some help.  The slide is the best fun ever. I sign "more" at the bottom so that they will help me do it again.  I also like to sit in the playground bus and sing "Wheels on the Bus."  My friend K is great at singing it with me. If you ever see me rotating my hands really quickly, I'm probably singing "Wheels on the Bus" to myself.

Circle time is really fun too. One of our teachers reads a book to us and we sign silly songs and do fun activities like play dough and sandbox and kitchen play.  I can now stand at the kitchen sink myself and do everything the other kids do.  My classmates are so nice.  My friend A wrote a book for me about how we play together, and another friend A always gives me hugs at the end of the day. I like her so much that I now sidle up to her and smile at her to let her know it's ok to hug me.

One of my IEP goals is to stack pegs. I'm getting really good at it!
On our last day, Mommy and Daddy came to see me in a little ceremony.  When I saw them walk into my classroom, I was really confused, but happy to see them. I kept turning around to look for Mommy. We sang a couple songs for our parents, and then we each got a decorated paper bag with some of our best art work inside, and I got a certificate from my teachers.  Everyone clapped for me, and I hid my face in my dress.  I don't like clapping. It scares me.  But I'm getting better at not being scared when people clap. I get over it more quickly now.

Mommy took about 20 pictures of me on the steps. I just wanted to grab the paper sign. 
Now that we are on vacation for 2 weeks before summer school, I miss all the activities and the routine!  But it is nice to sleep in too!

Stay tuned for my travels through 4 weeks of summer school!  I can't wait to get back to school! It's going to be a breeze since I know all the routines now!

Happy 4th, everyone!



Evie's Latest Recommendations for Making Life Easier for Evie (and Mommy)

Evie just got her second pair of SMO's!  (If you missed our post about her first pair, and don't know what SMO's are, click here.)  I feel a little mom guilt because I didn't keep up with her appointments at the orthotics clinic.  I felt like I could tell when she outgrew the SMO's.  I was wrong.  By the time we went back, she had outgrown her SMO's by about 2 cm, which is a lot if your feet are the size of a large avocado.  If you're interested, this time she got a princess print.

Rocking the walker around the neighborhood 

Evie's own solution for taking a break from walking


Now that summer is here, Evie's foot needs are a little different. SMO's are really hot and make your feet sweaty.  I've found that we need mesh socks and ventilated shoes.  Here are Evie's tried and true recs for the summer SMO fashion statement:





Can't forget the Hello Kitty shoes.  Thankfully, she hasn't decided to make it a project to open the Velcro and take her shoes off.


 Evie has also outgrown her current iPad cover. Outgrown = overused and bent out of shape.  I found a new kind that comes with a screen protector on top.  That is a win for a kid who drools as she watches Wheels on the Bus for the 3857th time. Evie's current favorite songs are Wheels on the Bus, Elmo's Brush Your Teeth song (very edgy for Elmo), and Laurie Berkner's Silly Brushing Song.




Evie's favorite books this week are more interactive, and very helpful when eating meals.
She actually started to make more sounds verbally when I read "I Can Roar" to her, because she loves animal sounds and seeing mommy's face through the hole in the book that you wear on your head.

 She also loves this Hat book.  I have added to my mommy repertoire the ability to act like a pirate, a Viking, a chef, a fireman, and a construction worker.



I've been actively looking for sensory activities for Evie to help her development.  I ended up with water beads and foam beads.  I got a clear bucket and she's been playing hesitantly with them.  She apparently inherited her daddy's dislike of getting her hands dirty.




I went for the foam stickers too, to help with fine motor skills.
The foam stickers were definitely a hit for an afternoon activity.



Those are Evie's latest recommendations!  If you use our links, the Amazon Associates program will add money to Evie's book fund!

Hope you are all having a wonderful summer.  Stay tuned for what happens for Evie in the summer during summer school.  We will be finding out shortly!

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!  

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