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Showing posts from 2015

Merry Christmas from Evie and her mommy!

Merry Christmas to everyone from Evie!  Evie has been busy meeting relatives and waving to the masses. She literally waves to everyone.  She got so many presents, that Grandma has to bring some back for us when she comes back to Boston. Her favorite part of the presents was the wrapping paper!  This is our second Christmas with Evie, but in some ways it feels like our first, because we were in the hospital last Christmas with a one week old baby!  What a difference a year makes!  We've been working on extra tummy time for Evie during the holidays.  Her upper body strength is great, but her legs don't want to move along with her arms to crawl!  The best incentive to get her to move is her feeding tube syringe. This is good news and bad news. Good because we have something she really wants, and bad when she tries to grab the syringe while we are feeding her by g-tube. We have spilled quite a bit of water and formula this way!  If you are the praying kind, ple

You are ONE!!

My dearest girl, I waited and prayed for a baby for so long, and here you are. I've had a whole year with you!  You aren't even really a baby anymore.  You are a squirmy, curious toddler with an infectious laugh and a smile that could light up the room. You are also a fighter.  You lived through 6 weeks in the NICU and charmed everyone around you, and you made open heart surgery look like a piece of cake.   The smiles that you gave after heart surgery made me realize that 1) you were not feeling well enough to smile very much before, and 2) that you have the cutest dimples. The experience confirmed to me how much God has been providing for us on this journey of being your parents . You (mostly) patiently wait for us to change your feeding tube dressing or let some gas out of your tummy. You put up with Mommy's playing dress up with you and telling you to pose for the camera. You even give a cheeze-y smile for me when I ask. You charm everyone at your many hospital app

How To Act Around a Feeding Tube

Sometimes when I'm hooking up Evie's g-tube in the food court in the mall, I look around to see if anyone is watching.  I still brace myself when someone shows interest in what we're doing.  I have no idea what they will say or conclude, but I do my best to explain why she has a feeding tube in a practical way. The Feeding Tube Association just released a brochure that tells our friends and family how to be helpful to us.  I love their list of what is helpful and what is not so much, that I had to post it.  Here is the full brochure: http:// www.feedingtubeawareness.or g/ Family_and_Friend_Guide_to_ Tube_Feeding.pdf Evie's mommy's commentary in italics below ( my original g-tube entry is here ): What is Helpful. Listening. Parents who are just starting on this process have a lot on their mind. They have concerns and they may not know all the answers yet. When Evie just got her g-tube, we were having trouble figuring things out post-NICU stay, and answer

A couple of good milestones

I just realized that today we hit 2 good milestones! Firstly, we said goodbye to one of Evie's many medications. This is her 6 month anniversary since her heart surgery for three holes in her heart!  She has had to take half a baby aspirin as a preventative measure for six months after the surgery. Today we stopped on doctor's orders, and good riddance!  Cutting pills in half and then getting them to dissolve in a small syringe of water to put in her g-tube is not something Daddy will miss.  The other milestone is that we don't have to see the Ear, Nose and Throat specialist anymore!  Since she doesn't wheeze with stridorous sounds from laryngomalacia, and also since she hasn't had any ear infections, the doctor doesn't need to see Evie anymore unless she gets an ear infection.  Kids with Down Syndrome are more vulnerable to ear infections due to their ear anatomy, but Evie has been lucky so far. Thank you, God!  One less doctor to visit!  Three

Happy Thanksgiving from Evie!

A very happy Thanksgiving from Evie!  We are so thankful for this little turkey. She has brought us so much joy!  We are also thankful for the friends and family who have surrounded us with love during this very adventurous year!

G-tube adventures in public

What do you do when your daughter's g-tube button pops out of her stomach while you're in the middle of a busy restaurant? In the middle of S&S Restaurant, I pulled Evie out of her stroller and didn't realize the G-tube was threaded through the stroller strap.  I looked down at what was pulling on her, and saw the whole G-tube button sitting there in her stroller. and the hole to her stomach peeking out at me.  Someone without experience with G-tubes might expect that blood and guts would come pouring out, but the only thing that would pour out would be milk or whatever food she had in there. I got scared to death of this happening when we first left the hospital. They just told us we had to go to the ER if her button popped out of her stomach, and that we had 2 hours to get there before the hole closed and she had to have surgery again to get another one on there.  Thank GOD that The GI nurse at Boston Childrens taught me how to change it out. On a dol

Halloween--a realization of a life's dream

Evie's mommy had a little too much fun preparing for Halloween. For so long, I've dreamed of having a child of my own to dress up in a cute costume for Halloween.  Then Evie came. And I got THREE costumes. This is today's final costume--the one that Evie tolerated most.  I think it turned out well, since I like penguins so much. She used to have a long sleeve white shirt that went with the outfit instead of a polka dot shirt, but a poop explosion on a red blanket took care of that, once the blanket went in the wash and turned all of our laundry pink.  But I had other aspirations as well.  For a cute New England girl, how much did it make sense that she would be a lobster??  But as soon as I put this on, she gave me a look like when will this be over, Mommy.  The second I took off the lobster hat, she was all smiles.  My attempt at brilliance was to make her the dancing left shark from Katy Perry's Super Bowl performance last year.  If you d

Please be her friend. Love, Evie's Mommy

I've had this post ready for awhile now, but haven't published it because I thought it was a little bit of a downer. But I think it's important to bring up, because if Evie didn't have special needs, I probably wouldn't have paid as much attention to this. The other day, I read this article by a mom (and Facebook friend) who has an older child with Down Syndrome.  She has already traveled much of the road that we are just embarking on. When Your Child With Special Needs Doesn't Receive Any Invitations. By Sharon Randall As I read this article, I grew more and more sad. Oh, please, please--don't let this happen to Evie!  I hurt for her.  I can't shield her from peers who won't know any better and perhaps see something different about her when she's older.  All I can do is hope and pray that she makes friends who love her and look out for her. It's so great to see all the neat blogs and articles in honor of Down Syndrome Awareness m

Evie on the Catwalk

A number of friends have asked me if I have heard about Madeline Stuart, the first model who happens to have Down Syndrome.  I think she's great, and I think her mom must be amazing as well, to have encouraged her daughter to go after being a model, even when this hadn't been done before. There's also Gigi, another up and coming model who wants to show the world that people with Down Syndrome should not be limited by people's assumptions.  I'm so inspired by these young women. Evie is Mommy's model!  I have dreamed of dressing up a little daughter for years, and now I get to. No, I am too young to watch the Kardashians. But thanks for asking.  I can't tell you how excited I am about Halloween.  There are too many cute possibilities for costumes.  I have looked forward to dressing up Evie for Halloween since I knew we were pregnant with her! But today's post is about clothes.  Clothes for kids with feeding tubes. Things can be differen

Joining a new "family"

I remember watching a TV show many years ago where a woman bought a Saturn car and suddenly found herself as part of a happy community of Saturn owners.   It was very cheesy, but the woman felt like she had found a new family.  Just because she drove a Saturn. Evie and Mommy went to our first New Families Event by the Massachusetts Down Syndrome Congress in Burlington.  And kind of like joining the Saturn family, but MUCH more genuine and life-changing, I feel like because Evie has that extra chromosome, we have found a new family. This morning, Evie and I walked into a room full of the cutest babies/toddlers, their amazing siblings, their parents, and grandparents.  I ordinarily don't love huge rooms of people I don't know, but I immediately felt at home.  We all had a connection with Down Syndrome, and it was there in the room, but more importantly, we were just enjoying our kids and sharing our stories with one another.  And even though all of the little ones had Down Sy

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

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