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...

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 tr...

Today is my first day back to work full-time.  I feel lucky to have had more time with my daughter, although I wish she didn't have to go through so much during the first few months of her life. This morning, Evie woke up before Daddy and was smiling at me in her pack and play.  That is the best time of the morning for me, when Evie opens her eyes and sees me and gives me a huge sleepy smile.  And then she started grunting.  And pooping.  That's when I woke up Erick.  :)   Turns out she pooped so much, she soaked through her Zipadee Zip and her sheets, and then he changed her, and then she pooped again, and Grandma had to change her.  Yay for Team Moy! And yay that Mommy didn't have to change this one! This morning started off with a meeting, and they greeted me with a big potted sunflower to welcome me back.  That was so sweet! While I eat lunch, I have been reflecting on why I haven't been crying or feeling overwhelmed. ...

Last week, we had 2 big appointments that had to do with Evie's feeding. One was with the feeding specialist for the first time since she was 2 1/2 months old. (So much has changed since then!) The other was with the Enteral Tube GI and Nutrition Clinics.  Evie now weighs 16 lbs! We have worked hard for those thunder thighs! Our feeding goals for Evie include: 1) Drink more from her bottle so we don't need the G-tube 2) Eat more solids 3) Don't choke while drinking thinner liquids (i.e. we are still thickening what she drinks) When you go to the feeding team appointment, you're supposed to bring your child hungry.  Evie didn't seem to mind that she hadn't eaten in four hours. Those are not my genes!  She also decided to show the feeding specialist that she was not interested in her bottle. A head turn into my armpit was her message to us!  Perhaps because 4 people were watching her while she ate. I wouldn't like eating either with 4 people watchi...

Not sure if there is a book called Traveling With A Baby For Dummies, but I felt like I needed it. As someone who is a planner, I of course had to research how to take a baby with a G-tube and multiple medications on the plane to Vegas. The best summaries of what to bring were on the Feeding Tube Association's site , and on the blog Feeding Ray a. The logistics of how to get Evie through the TSA process and how to feed her on the plane, in a hotel, and in a hot environment were not situations in which I wanted to "wing it."   Here goes. GETTING THROUGH SECURITY All our medications were put in a small cooler the size of a thick phone book. The ice packs were frozen solid, because I had read that if your ice packs are slightly liquified in any way, the TSA will confiscate them.  Sure enough, I heard TSA agents both times mumble "frozen" to themselves as they confirmed that the ice packs were nice and frozen. Printed this card: TSA Card This card ale...

This past weekend, Evie took her first plane ride and her first vacation!  Our friends Jerry and Rebecca were getting married in Vegas.  I was nervous about her first flight, and spent a few days just making sure we had everything we needed. Just packing for a baby is hard enough.  Make that an aspirating baby on a g-tube who is starting solids, and it gets even more interesting.  But I am thankful that it's not an aspirating baby on a g-tube on oxygen!! Evie snoozed before take-off! We made it to the airport just in time to get through security, grab something for dinner for the trip, and pre-board.   Evie got her first pair of airplane wings, but was too sleepy to enjoy them.  Evie became known as "the good baby" on the plane, because there was another baby who was screaming the whole flight.  Poor baby and her poor mommy.   One fear was that Evie had not pooped in 2 days, and she usually poops at least once a day...