Evie the Extraordinary and Her Mommy: The Journey As We Go

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

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

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