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Showing posts from 2016

Evie is 2!

A little overdue, but Evie is 2! I don't know where the time went. I have to say that I much prefer Year 2 over Year 1. Year 1 was filled with anxiety about her health, oxygen tanks and feeding tubes, and going to numerous doctors' appointments. Year 2 was more about watching her grow in so many ways, and getting to enjoy her more. I swore I wasn't going to do anything for her birthday after last year's wedding birthday party, but Uno's did a great fundraiser that weekend for the Massachusetts Down Syndrome Congress, and donated 20% of the bill to the MDSC.  So we invited our friends to eat there with us! As she turns 2, here are some FAQ's about Evie that you may have:  Is Evie walking yet? No. But we just picked up Evie's ankle-foot orthotics, which we hope to ease her into as soon as I can get her bigger shoes to accommodate them. New purple sparkly hippo shoes are on their way! Hopefully with a more stable ankle support, she will feel more

Evie's Favorite Things, and Evie Climbs Mountains

The title of this post is a salute to the Sound of Music, which is one of my favorite musicals.  But mostly it is a list of Evie's favorite things.  Scroll to the end to see how Evie climbs mountains.  I'm always on the lookout for the coolest toys that will help Evie's development, so hopefully this will help someone else. The #1 favorite is Violet.  Since she was a baby, Evie has loved this toy. First for the light on the dog collar, then for the music, and now for the ability to press buttons and change the music like any independent toddler would want to do.  She likes the sound of music for sure! One of Evie's favorite books is Click Clack Moo.  This book makes it's own reference to the Sound of Mooosic, and it's awesome!  Other favorite books are Guess How Much I Love You and the Pout-Pout Fish.  Lift-the-Flap books are irresistible to Miss Evie. Here's a trio of books that she loves: Chicka Chicka Boom Boom, Dear Zoo, and Click Clack Moo! And

The Adventures of Eating Evie...

...and I meant this as an adjective and not a verb.  Evie is eating!!! I haven't blogged in awhile, mostly because of being busy, but also because I have been focusing my energies on getting Evie to eat.  Since I last blogged, Evie has transitioned to a new nanny and also gone through a developmental leap (which I never knew about until I had a baby!).  In the midst of all of that, Evie decided she had zero interest in eating food by mouth. Zip, zero, zilch.  She would turn her head away, and if we begged her too many times, she started to cry.  My biggest fear was a food aversion, so we just backed off... ...and silently freaked out that Evie would never eat.  Well, I freaked out.  My husband almost never freaks out.  I like to think that my freaking out/intensive planning sometimes gets this family to bigger and better places.   My husband may have a differing opinion. Over the past couple of months, Evie had gained enough weight for the nutritionist and GI doctor to feel c

Why I feel sad sometimes, and why squeaking hippos make me feel better

I wouldn't trade Evie for the world. But the other day, I felt a sudden sadness that this world expects certain things and she is not on its timeline.  We celebrate the same victories with her...just a lot later. And I see the gap of time growing bigger from her peers.  I recognize that we are now entering the time I dreaded a bit--the time where she's not a teeny tiny baby whose job is only to look cute. Now she's expected to walk and talk (insert where someone tells me their child didn't walk until age 2, which I do appreciate).   At 20 months (Happy 20 months, Evie!), Evie is able to stand with assistance or lean on something for longer and longer periods of time. But I don't know if she will walk this year or next year or even by age 3. Here's a nifty chart that shows the typical range for certain skills for a typical child vs a child with DS.   (from "Down Syndrome Awareness Month."  http://blog.epichealthservices.com/down-syndrome-awarene

Babysitters...I mean Baby Apps

I started motherhood determined not to let Evie have too much screen time.  I would say that still applies for TV, but I am now convinced that the iPad is a great tool for Evie's learning.  She is, after all, a child of the future!   As technology gets used more and more, especially with assisted learning, I see it as an advantage for Evie to already know how to use an iPad. Here are our favorite apps! Peekaboo Farm: When Evie first started looking at this app, she didn't understand that she should hit the screen to see the animals.  Now she understands Cause and Effect, and gets rewarded by a cow appearing and mooing at her.  This is not to be confused with Peekaboo Kids (instead of Farm), which isn't bad, but shows certain animals answering nature's call and then cackling, if you're offended by that. Peekaboo Fridge:  A variant of Peekaboo Farm, but just as good.  If we are teaching her about food, then why not?  They also have Peekaboo Christmas, Peekabo

Things I never thought about with food

We got the go-ahead from our GI doc to cut down the amount of formula by g-tube to try to make Evie a little hungrier.  There is a whole world out there about different philosophies of weaning kids off g-tubes, and I won't go into it here, but it's truly making my head spin.  I am just going to give this plan a chance (of reducing 20%*) and give Evie a few weeks to figure out that food is even more fun than she thought.  We expect she will lose a few ounces here and there, and our goal is to use some food strategies to keep her from losing too much weight while she expands her food horizons. The most important lesson for the summer is: FOOD IS FUN, EVIE! So you need your kid to gain weight. She doesn't even eat food with too much texture yet. She can eat purees and yogurt, and that's about it.  How do you expand her palette and avoid food aversions at the same time? I haven't come across a comprehensive list of food tips, so I'm going to write down what

A big Heartiversary

One year ago, we were already in the hospital with Evie, who was prepped for her big day.  It's not every day that your child goes in for open heart surgery. I felt terrified, excited, anxious, and confident all at the same time.   Terrified because of all the risks of heart surgery. Excited because finally my baby wouldn't be too tired from the 3 holes in her heart to do anything.  Anxious because Evie's life was in someone else's hands. Confident because Evie was already a miracle from God, and He had already shown us that she had things to do in her lifetime!  When Evie was picked up by a nurse and the nurse walked away from us to the OR, she looked over her shoulder at us and my arms felt empty.  The hours of waiting went in segments of phone calls of updates from the nurse. We wandered around the hospital, just waiting for the next call.  The hardest segment was after the call that Evie was on the bypass machine, which essentially meant that her heart was stopped f

Personalized board books for Evie

Evie loves books. When we say, "Evie, do you want to read a book?" She gives an excited yell in response.  Every night, Daddy reads 3 books to Evie, and she pays attention. Evie's all-time favorite book is Brown Bear, Brown Bear by Eric Carle.  Thank goodness somehow we got 2 copies of this book. One in each room that Evie hangs out in. Our developmental therapist suggested that we make a book with pictures of important family members so that she could learn their names. I thought about making my own and laminating the pages, or buying a ready-made board book and pasting pictures onto the pages, but I didn't like the thought that Evie could rip apart my hard work with little effort, or that the pages might be too flimsy for her to turn. So I found a company that does this, called Pint Size Production s.  They make board books with digital photos, so the result is a picture book of the quality that Evie is used to looking at. Evie is currently being well-ver

Virtual walking, and Team Down Syndrome

Hi all!  Evie here. I haven't learned how to walk yet, but I found out that I can be a virtual walker and still help to raise money for Team Down Syndrome at the Boston Childrens Hospital.  Please consider donating to my team so we can help to support the Down Syndrome Clinic, which has been instrumental in my family's life in the past 2 years. Here is my very own personal page! Thank you for your support and love! Love, Evie

The greatest guessing game of all

The greatest guessing game of all is...how to motivate Evie to eat.  Someone was surprised that we actually count the number of BITES (and not ounces) that Evie takes. Well, that's because that's all she'll eat by mouth.  We are averaging 5-8 bites a day, although every once in awhile she'll eat more than 20 bites for our nanny, who is definitely our MVP. The end goal is to cut down on her g-tube feeds so that she'll be hungrier. When we get clearance for having gained back all the weight she lost this winter, we will start the adventure! In the meantime, we definitely have learned some helpful tips for those for which eating is not second nature. Here are some of the finer points of eating we have learned: 1.  A child with oral aversions or sensitivities can be very sensitive to where the food falls on her tongue.  When we feed her with a spoon, she does fine with food on the tip of her tongue.  But any food towards the middle of her tongue makes her gag. 2.

Baring my soul at work, and the future of people with Down Syndrome

I just laid it all out there. I hadn't woken up and gone to a communication and teaching conference thinking that I was going to be so vulnerable with my colleagues, but when we were asked to give a 2 minute talk on any topic of our choice, I knew I had my topic. "NO LIMITS." I started by saying that I wanted to share my journey with Down Syndrome, and to convince them not to limit their expectations of people who have DS. I told them my theme was NO LIMITS.   This is totally a popular tag line in the DS Community, but they had never heard it before. As I told them that we had found out at 10 weeks in utero that our daughter had DS, and that she was a girl, I started to realize that I might just cry while I told my story to my coworkers. But it was too late--I had already started my story.  With a voice that started out strong and quickly became shaky, I told my colleagues that my initial response to the diagnosis was to think that my daughter would never go to

Evie the pirate...for 30 minutes

Evie's eye turn has been getting a bit more pronounced. Her eyes switch off to turn in towards her nose most of the time.  This is called intermittent alternating esotropia (if they turned out, it would be exotropia).  My initial post about eyes is here . She also has huge epicanthal folds, which is basically the extra skin that covers the nasal corners of the eyes, and can make an eye turn, known as strabismus, look larger than it is. I was hoping she would grow out of it, but my observations were confirmed at her last ophthalmology visit.  The size of her eye turn had doubled in the last 8 months.   I could have brought prism bars home from work to measure them, but there's just something about doing an exam on your own kid--I am too biased and emotionally involved to do it myself. Here is Evie with an eye patch!  We are doing it every 30 minutes on her right eye, because her left eye is the one that turns in more often. If we teach the left eye to be use

How to sit like a big girl...and another milestone!

I took sitting for granted until Evie got occupational and physical therapy.  First I waited for her to sit up on her own, and then once she did, I learned there was the right way and the wrong way to sit. Sometimes I'm just so proud that she got to the next milestone, only to find out that there's another one that we are aiming for that she's not doing "correctly." For instance, while she sits up for long periods of time now, the way she sits is to stick one leg behind her to give her more stability.  Or she "tripods" and leans on her hands.   The right way is to "ring sit" so that she can strengthen her core, and ideally she doesn't need to prop herself up when she gets tired. Sticking a leg out to balance herself I must stick one leg out at all times and rest my hands on my knees. Sitting is hard work! Ring sitting! But still leaning on my knees. Not too shabby!  Sitting like a champ.  But who needs to stay still?!

Evie gets sprinkled, and a few cool products

Evie has had a busy month!  First she got the norovirus and gave it to Mommy, Daddy, our nanny, Yin-Yin, Ah-Gong, and Ah-Ma.  Then she started teething again and is getting in her 2 front teeth! On Palm Sunday, Evie got sprinkled!  That is to say, Evie got baptized!  I've been waiting for this day for almost a year. Evie gives Pastor Dave "the eye" We would have done it sooner, but it's so much easier to baptize a baby when you don't have to lug an oxygen tank on the stage with you, and photos are so much nicer without oxygen tubes!  After Evie had her heart surgery at 5 months old, we got busy with my going back to work, and then we put it off for awhile.  So the day finally came!  Evie was a shining star, and didn't cry at all! We were happy to celebrate this day of acknowledging that Evie is our gift from God, and that she is a child of God. Evie had quality time with both sets of grandparents this past year. We are grateful for all they have d

IFSP = I Find Some Problems, and Early Intervention

Ok, IFSP does not stand for "I Find Some Problems." It stands for Individual Family Service Plan.  An IFSP is a summary of services for a child who has developmental delays before the age of 3. This is to assess her eligibility for services, but she is automatically eligible because she has Down Syndrome. Once she turns 3, she will get an Individual Education Plan (IEP), which is geared towards preparing Evie for school. There are an awful lot of acronyms in the world of special ed,  and I am still learning. Basically a team from the Early Intervention program comes to our house, and they have a checklist of developmental skills to assess. She gets a score in each category at the end, and then they tell us how Evie is doing compared to her peers.   Last time we did this, she was 3 months old, the questions cracked me up, because she was only 3 months old and couldn't do most of the things listed (but who can?). 3-month old Evie (and Violet) 14 month old Evie!

Today's post brought to you by the letter R...and S...andV

After five days in the hospital for RSV, we are home!   I never knew what RSV was until we were in the NICU.  RSV stands for respiratory syncytial virus. Most kids get it by age 2 and get better in 1-2 weeks. But kids who are preemies or have respiratory issues are at higher risk of getting bronchiolitis or pneumonia. Evie got bronchiolitis. Hence the fast breathing that alarmed me and brought me to the ER.  Our other little friends with Down Syndrome had RSV, and I guess we joined the club.  I'm pretty skittish about being around people with colds now. I used to not care, but now if I get sick, there's a high chance Evie will get it, and it is so sad when she is sick. I also do NOT want to spend more nights sleeping in the hospital, as fun as it is to see our friends there!  So please don't be offended, friends, if you lean towards Evie and then I ask you if you'd like to use my handy Purell hanging from my purse. I'm protecting my young. :) Here i

Back at the hospital, and almost meeting Julian Edelman

I thought that winter was almost over, and that we had made it without a stay in the hospital.  I spoke too soon...here we are in the cardiology unit of Boston Childrens for an unexpected stay. Evie started with a cough and runny nose, and just went downhill over the next few days. She started breathing rapidly and was crying frequently. We were told that if her oxygen saturation levels went down to 90%, that we should go to the hospital.   I called Pediatrics and the nurse said to go to the ER, and offered to call me an ambulance. Evie was smiling and playing with her toys, so I figured driving in was just fine. I emailed the cardiologist and he agreed that we should go in.   Here's Evie looking at her new accessory, aka hospital wristband.  No wait in the ER! Woot! I was affirmed by the cardiology fellow for bringing her in.  They saw her oxygen saturation levels dip a bit while we were there, and that won her a ticket to stay overnight for monitoring.  Evie enjoyed the ride in M