First Down Syndrome Clinic

It might sound strange, but I was looking forward to this day. This was Evie's first visit to the Down Syndrome Clinic at Boston Childrens.

When we found out about Evie's extra chromosome at 10 weeks prenatally, we learned quickly that there was a Down Syndrome Clinic at Boston Childrens (there's also one at Mass General).  We met with Dr. Emily Davidson, the director of the clinic, and were very much reassured by our visit. 

We checked in at 8:30 am and I was so happy to see other kids there playing in the waiting room. Look, Evie, I wanted to shout, there are other kids like you! Each one so unique!  I felt a certain kinship with everyone there even though we didn't say much. Parents just smiled at each other.

Angela, the longtime coordinator for the clinic, orchestrated where each family went. She has a son with Down Syndrome, and he just started college this year! 

The first stop was Height and Weight. Evie was 26" and weighed 16 lbs and 7 oz!

Physical Therapy was our first appointment.  The PT played with Evie and assessed her in different positions. Evie was very vocal about what she did and didn't want to do. Her favorite position is tummy time with her hands folded in a praying position. Very proper, my girl is!  She does not like working muscles that she's not used to using. Basically Evie is coming along very nicely.

We learned that we can work on having her grab things more with two hands and practice transferring objects between hands. Also grabbing for things above her and off to the side are skills we will have to aim for. I think she's close. Seems like maybe she will sit on her own in 1-2 months too at her current rate!  This mommy is ecstatic thinking about how photos would drastically be easier to take of Evie could sit up on her own!

The pediatric dentist was our next stop.  I was very impressed with her.  She was extremely professional and knowledgeable. Erick and I both swabbed our gums and gave samples to find out in a couple weeks if we have more predilection towards cavities, because apparently the bacteria we have can get transferred to Evie when we kiss her.   That is so interesting!  We got a toothbrush and her first toothpaste, which will be ready for use once her first tooth pops up.  The dentist said it would be a little while longer for teeth for Evie.  In the meantime, she is a drool monster.

"Drool monster" means Mommy shops for drool bibs!  Someone asked where I get Evie's drool bibs, so I thought I'd share a link.

Anyway, back to our 4-hour tour...

The feeding/speech pathologist was next.  We already see one at Childrens, but it was nice to check in with someone else to see if we could learn anything new. She saw Evie NOT take the bottle, and do the turning of the head into my armpit.  We talked about the straw box and the sippy cup. She encouraged me to give the sippy cup another try.  I can say 3 weeks later that this suggestion changed our lives.  Evie drinks more out of the sippy cup than she drank in the bottle, and we are averaging more about 30 ml of formula, as compared to before maybe 10 ml if we were lucky. Yay for Tilty cups!

Nutrition was next. We already have a nutritionist in the GI clinic, but it was nice to hear a second opinion and confirm that we were doing a good job.  Evie's growth curve always impresses the clinicians who see it, because it just follows the curve so nicely.  The only dip this whole time was when she had heart surgery.  This is in stark contrast to when we were in the NICU when she was born, and every ounce she gained was a victory.

Next we had a break while waiting to see Dr. Davidson.  I was impressed with the foresight about when Evie would be in each part of her visit.  They like to make the most of the babies' awake time and get them through their appointments before the conk out from the long morning.

Evie takes a break in the Hale Family Center with Daddy

Dr Davidson took us in and examined Evie, who was miraculously still awake.  She ran through every specialty to make sure that we were well taken care of.

Evie has decided she really likes exam tables.  She likes to do tummy time and drool all over the paper, leaving her mark(s). 

And that was our fun morning at the Down Syndrome Clinic!  We felt well cared for and like we had just joined a big family.  Thank you for such a nice visit, Dr. Davidson, Angela, and team!

First Eye Exam!

I am behind in blogging because I went back to work full-time 2 weeks ago.  But I can't not blog about Evie's first eye exam!

It was fun to be on the parent side of things for an eye exam for once, since I am an optometrist.  I hope that in sharing Evie's experience, we can help other parents know what to expect. Kids with Down Syndrome should have a full eye exam around 6 months of age in order to look for certain vision findings that need to be caught early.  The main things to look for in a child with Down Syndrome would be:

  • Amblyopia (Lazy Eye--decreased vision from abnormal visual development)
  • Strabismus (Eye Turn--eyes usually cross in for kids with DS if they have an eye turn)
  • Cataracts 
  • Glaucoma 
  • Nystagmus (shaking of the eyes)
  • Blepharitis and Watery Eyes
  • Keratoconus (changing of the corneal shape, usually in teenage years) 
  • Need for glasses (either near-sighted or far-sighted)

I decided to go to Boston Childrens for Evie's eye care because all of her care is there already, and I wanted her to have an official exam on the books instead of doing it myself.  Evie was seen first by an orthoptist. Orthoptists work with ophthalmologists and assess patients for amblyopia and strabismus (lazy eye and eye turns).  Today, the orthoptist checked the following:
1) Vision
2) Alignment of the eyes to see if there was an eye turn
3) Peripheral vision
4) Visual acuity (eye chart)
5) Put in dilation eye drops for the ophthalmologist to assess the back of her eyes.

The tale of Evie's journey through an eye exam...
1) Generally, an eye exam for a baby goes pretty quickly. You don't have much time with their short attention spans. The doctor will wave lots of lights in front of your baby, make lots of noises, and generally try to keep their attention.  The orthoptist waved spinning lights and fun toys that made sounds, and put a sticker on her nose.  Evie followed all of the targets she presented. Score 1 for Evie!

2) Next she shined a light into Evie's eyes to check her pupillary reflexes, and held prisms of different amount of power (optical power, not supernatural power!) in front of her eyes to see if her eyes moved while looking through the prism.  All of this was to check for large amounts of an eye turn.  The orthoptist and the doctor did a cover test with their thumb.  By covering and uncovering (and then alternating) Evie's eyes, they could look for any resulting eye movement indicating an eye turn.

Evie does have a small alternating intermittent eye turn inwards.  This means that sometimes one of her eyes will turn in, and it alternates between the two eyes.  Nothing is needed right now for treatment--she may even grow out of it.  Eye turns are treated with glasses, eye patching, and sometimes surgery.  Evie needs none of those for now.

Not only is Evie a kid  with no nasal bridge, but she also is Asian. This makes for huge epicanthal folds, which are the extra skin on the nasal side of the corners of her eyes, which enhances the appearance of an eye turn. Babies usually grow out of this.
I love you, little button nose!

Note the cross-eyed appearance of the right eye in
You can see that the eye turn looks lessened when the skin of the epicanthal fold is pinched together.
"Pseudoesotropia." JJ Katla.

3) Next, the flashing lights and fun toys were back, except they came at Evie from the periphery, and each time she turned her head to look at them.   This checked her peripheral vision.That's my girl!

4) How the heck do you measure a baby's vision? They can't read letters! Glad you asked.
Teller Acuity Cards (www.stereoopticalcom)
Davida Teller is on the left holding her grandson while the baby is being shown a Teller acuity card by his father.
Dr. Teller demonstrating Teller cards with her grandson and her son; From by Luisa Mayer, PhD (
These are Teller acuity cards. They have lines on one side of the card of different thicknesses and spacings. If the baby looks at the side of the card with the lines, this indicates that they can see these lines. The lines get finer and harder to see. Evie saw quite well at 20/80 with both eyes.

The fact that Evie saw equally between the two eyes is important (and not so much the numbers), because she often appears to have an eye turn.   If one eye had seen less than the other eye, she would have needed an eye patch to help the other eye to learn to see better.   This is one of the main things that an eye doctor will look for--a significant difference between the two eyes.

Evie did not have much of a refractive error.  So no need for glasses at this time, although she may need them when she gets older.  I am biased, but I think little kids look adorable with glasses.  Kids with DS also have small/no nose bridges, and need special frames to fit their faces properly.There is a great summary of glasses for kids with DS on "Noah's Dad"'s blog:

5)  As a baseline eye exam, a child will typically get eyedrops during their visit to make their pupils bigger so that the doctor can get the full extent of their prescription (to see if they should have glasses), and to check the health of the inside of their eyes.

Kids with Down Syndrome sometimes have a hypersensitivity to certain eye drops used to dilate the eyes.   The drops that have a warning with them for Down Syndrome are Atropine, and to a lesser extent Cyclopentolate.   Because of Evie's heart and lung problems,  I stopped the orthoptist from using Cyclopentolate, which is a pretty standard dilation drop for kids, and politely asked her to check with the ophthalmologist.   She did so, and came back telling me that the ophthalmologist told her that was a good question.  So we just used Tropicamide, which has no risk of hypersensitivity with Down Syndrome.   These drops can sting and burn a bit, but Evie only cried for about 30 seconds.  I am not saying that all parents should say no to Cyclopentolate, because it offers very useful information for the potential need for glasses.  If Evie had not had a history of a heart and lung condition, I might have considered dilating with Cyclopentolate. 

Overall, Evie's eyes looked great. No cataracts either (which Mommy already knew). Some watery eyes because Evie's facial anatomy with DS makes for narrower tear drainage channels, but hopefully she'll grow out of that.

Great job, Evie!  Mommy is so proud of you!

P.S. Optometrists can also confidently assess children's eyes!  It's best to get a baseline eye exam for your child by age 3, so anything abnormal about their visual development can be caught early.

Evie's First Trip to the Aquarium

Grandpa and Grandma are here!  Evie calls her daddy's parents Ya-Ya and Ying-Ying.  They are of Toisanese descent.  Evie calls (well, she WILL call) my parents Ah-Gong and Ah-ma.  They are Taiwanese.  That makes Evie "Toiwanese"...

Last weekend, we went to the New England Aquarium.  Evie was sleeping when we arrived. When she woke up, she found herself in a dark building that had lots of glass and water and lights shining on funny things that swam around.  I think she liked it at first, but then it was just noisy and humid in the the end. Ya-Ya, Ying-Ying, and Mommy got some nice pictures though!

Evie says, Mommy, why do you keep making me look at those black and white birds?

The starfish wanted to take a picture with Evie, but Evie kept snoozing.

Evie was not impressed by the big fish. She stared him down.

She did like the top of the water tank. Hello, giant turtle! 

All in all, a successful first trip to the aquarium, even if Evie did not automatically fall in love with penguins as Mommy had hoped!

Until next time, jellyfish!

Evie's Adventures in Storyland, from a sensory sensitive kid's point of view

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