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, please pray that she would be able to strengthen her legs so that she can crawl soon.  We are grateful for how wonderfully she is doing. We have been extraordinarily blessed. 



Evie is so happy to look at all the lights up for the holidays. She is also happy that so many people want to carry her! 


Merry Christmas, everyone! 

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 appointments and wave enthusiastically at everyone. You have a little bit of separation anxiety right now like any other kid, and I secretly love being the one who you want to see. You give the best hugs when I've been away at work and you finally get to see Mommy. Your big eyes that searchingly study me when you're supposed to be sleeping--how can I be annoyed with you? You are just too cute.


The song below was my theme song last year for my life. It was a reminder of the gift of a baby girl I was going to meet soon, and I had no idea how your extra copy of a chromosome would affect our lives. The song was written by another mommy and daddy of a baby with an extra copy of a chromosome. You are beautiful inside and out and I wouldn't change anything about you.



Evie, you are a joy to Mommy and Daddy.  You have surpassed my expectations in every way. We are forever changed for the better by being your parents.  I pray every day that I would be a good mommy to you. You are our perfect gift!   Happy First Birthday, Evie!

Love,
Mommy

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.org/Family_and_Friend_Guide_to_Tube_Feeding.pdf

www.feedingtubeawareness.com

Evie's mommy's commentary in italics below (my original g-tube entry is here):

What is Helpful.
  1. 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 answering questions about the g-tube so early on was very hard for us.  But as we talked about it later with friends, it helped us to better formulate (in our sleep-deprived state) what questions we needed to ask the pediatrician.  
  2. Helping by doing other chores. Cooking, straightening up, taking care of our other children.
     Cooking and cleaning were so helpful to us in the early days. We are indebted to both of our moms for coming to stay with us in snowy New England and cooking and cleaning for us. 
  3. Understanding that parents are the experts. This can be hard if you have
    raised your own children. Unless you are involved with conversations with
    doctors, specialists, nurses and are with the child day and night, you may not
    fully understand the situation.    I am still navigating this.  I am the one who takes Evie to her feeding and GI specialists and I think day and night about her feeding. In my spare time, I am looking up ideas for food on Pinterest or reading the comments of other tubie families on a Facebook group.  Advice is nice, but when it comes from someone who doesn't know about g-tubes and feeding difficulties, it doesn't have the same effect. 
  4. Asking questions is fine. Just be mindful of our feelings. This is our child.
     I am totally ok with questions. It shows people are interested.  But sometimes the answer is so long, that it takes me a moment to figure out what to say.  Some good questions to ask are:  How are you feeling about her feeding these days, or How is she doing with trying new foods.  
  5. Talk directly to an older child. He or she may be able to answer questions.
  6. Understanding that tube feeding isn’t unpleasant. It is just another way to
    get in calories and hydration.  The first time I explained Evie's feeding tube to a young child, I just matter of factly said that Evie didn't eat enough using her mouth, so we had to use the tube to get food to her stomach. The child accepted this and went off on her way. It was that simple.
  7. Learning more. Try to understand the child’s medical conditions.

What isn’t Helpful.

  1. Saying you “hate” the feeding tube. Also, don’t say you wish that the child
    would just eat normally. We also wish that there wasn’t a need for a feeding
    tube, but we are very aware that tube feeding is making it possible for our
    children to get the nutrition and hydration they need to live, grow and thrive. If
    a child couldn’t breathe well enough, you wouldn’t hate the oxygen tank.
     This is an important one for me. More than anyone, I want her off the feeding tube, but right now it is a blessing to us, and I appreciate everyone treating it as such. It is what makes her look so strong and healthy right now. It is what enabled her to be strong enough to have heart surgery. It is what got us out of the NICU, because otherwise we might still be there today! 
  2. Feeling bad for us or our child. Empathy and acknowledging challenges is
    fine, but don’t feel bad for our child if he or she is unable to eat certain foods.
     Evie's birthday is coming up, and she will get a smash cake just like anyone else.  She won't eat the cake, but I sure hope she will eat some of the frosting!
  3. Help us find ways to make gatherings about more than food.
    This isn't as big a deal for us right now. We want Evie to notice that people are eating, and that they enjoy it.  
  4. Telling us that it is just a matter of finding foods that our child will eat. If it
    was that simple, the feeding tube wouldn’t exist. There are underlying medical
    issues that often can’t be seen.

     No one has said this to us, but I can see how this would be really frustrating for another parent of a tubie.
  5. Comparing apples and oranges. Something may have helped your friend’s
    cousin’s child with reflux, but that doesn’t mean it will help a child with a
    different medical history and conditions.
       When someone gives me advice, I listen and then sort out what might be helpful and what is not as applicable to Evie.  I need time to process and feel comfortable about trying new things with her. 
  6. Telling us not to feed our child in public because it will make this person or
    that person uncomfortable.
    Children shouldn’t have to be fed in a corner or a
    bathroom, or not fed at all because of social concerns.
     Thank God no one has said this to us! I think I would either cry or want to punch them. This tops my list of most unhelpful things to say.
  7. Giving a child food without the permission of the parent some children
    have dietary restrictions or are unable to eat food safely by mouth. This one is so important to me. With Evie's history of aspiration and her low oral muscle tone, I am pretty sensitive about what she can and can't eat. Just the density and weight of the food we give her can make her gag. She still has thickened fluids because it is hard for her to coordinate her swallowing quickly enough for liquids like water. 
If you've read this far, thank you!  If you've asked me any of these questions, please don't feel bad. I hope this helps you know how to help us in the future.

Here are some more FAQ's specific to Evie:

Q: What is she eating these days?
A: Evie is enjoying a luxurious taste of different foods. She eats expensive Siggi's kefir yogurt and Mommy just used a Baby Bullet for the first time to make her Asian pear puree and sweet potato puree.  She is still unable to eat lumpy foods without gagging, and because we don't want to create oral aversion, we are slowly introducing lumpier foods.  She eats a lot of Plum Organics pouches, and loves berry flavored things just like her mommy.

http://www.livingrichwithcoupons.com/wp-content/uploads/plum-organic-pouches.jpg
-------------------
Q: How much does she drink?
A: Not much. Maybe two sips of formula if we are lucky. We've mixed in yummy things, changed formulas, tried different temperatures, and she just doesn't want to drink. Thankfully, she lets us spoon feed her, but that doesn't give much volume, so we end up giving the rest by g-tube.

http://www.uofmmedicalcenter.org/fv/groups/public/documents/images/110875.jpg
 -------------------
Q: When will she get off the g-tube?  
A: It's going to be a long journey. For some kids, it takes years, and for others it takes months.  We are currently switching to a supplemental formula to see if Evie will get hungrier with less volume, but need to make sure she still gets enough calories and hydration.  This question stresses me out and makes me feel like I'm not doing enough to get her off the g-tube sometimes.   But we can't rush Evie--she has to feel like eating is fun and that she wants to eat.  This means stopping her oral feeding even if she's only eaten 2 good bites, and then trying again after a break, but not forcing her.  Right now we are up to about 5 good bites a meal.

Thanks for your prayers and good wishes for Evie!  To be continued...


https://s-media-cache-ak0.pinimg.com/236x/f1/86/a4/f186a49c8b8af7c9d92d0ce7fbf4ac87.jpg
Tubie button cover in the holiday spirit!




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 cheers for Evie! (This originally autocorrected to 3 beers for Evie, but lucky for her I caught that.)

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 doll, and then on Evie. Because I had been trained, I was able to keep my cool thanks to the nurses. I might have freaked out more, but since everyone else was freaked out, I had to stay calm. 

I took a napkin from the table and held it over Evie's open stoma (the opening to her stomach). No milk was pouring out. Evie just looked at me like, What's happening, Mama?  She had no inkling that something had happened.

I calmly told Erick to get the backup MiniOne g-tube kit from the car.  My emergency preparedness had paid off, although now it is most definitely going to be in the diaper bag from now on, instead of in the car.  

Right there on a restaurant bench, I had Erick test the new balloon and prepare the water syringe and I reinserted the new g-tube button in her stomach while I sang about Wheels on a Bus. Evie had no clue at all that anything had happened. 

And that was it! We got to eat yummy brunch instead of spending hours at the ER. If that's not a huge case for patient education, I don't know what is! 

After our little adventure. Evie looks no worse for the wear.  Mommy has aged 5 years.

Someone is 11 months old this month! What happened?!

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 don't know what I'm talking about, here is the clip of the dazzling dancing the Sharks did--especially the left one. 




And here is Evie's interpretation:


Mommy is done making Evie dress in silly costumes for this year.  Until next year, my friends!

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 month. But one day, I hope that news articles about people including those with Down Syndrome won't be a novelty, but a normal occurrence.  I don't want Evie to be a mascot or pet project, but just part of the "gang."  (But maybe not a motorcycle gang, please, Evie!)


Everyone is so supportive of us and so loving to Evie right now.  Thank you to our friends and family who have 100% accepted Evie, wanted to know more about her medical needs, and asked how they can support us. Your love has been so important to us.

There is a little 5 year old girl who lives down the hallway in our building.  She has taken a liking to Evie, and drops little cards and gifts at our doorstep.  This warms my heart so much!  I don't worry as much about the adults as I do about her peers.  I hope that Evie can keep up with the other kids, and I hope that they want her around and seek her out. It will just about break my heart to hear for the first time another parent tell their child that they should include Evie, but I will also want to hug that parent as well (and need a hug myself). Maybe I'm being a little paranoid. I think every parent wants their child to have friends. But having been a kid myself, I know how kids can ostracize other kids because they are different.

I think many have seen this video by now, but this 12 year old boy wrote a rap song about his sister with Down Syndrome.  He must have seen her hurt often enough to inspire this song.  We need more kids like this in this world!


Having said all this, I wouldn't trade this for anything. Evie is the best thing that ever happened to me, besides marrying my husband.



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 different for a kid with a tube coming out of her stomach.

When Evie was in the NICU, she wore the snap front sleepers.  This was fine because Evie couldn't roll over yet or pull at her many cords.   She had an oxygen tube and an NG tube, which is a feeding tube through her nose down her throat, so there was nothing attached to her tummy.  When she got the G-tube through her tummy though, this changed Mommy's whole wardrobe scheme.

She actually had a G-tube at this point, but just had to show off my tiny Evie in one of my favorite snap front sleepers!
At 5 weeks old, Evie got a G-tube, which is a feeding tube connected through a port that was surgically inserted into her stomach.  As you can see, the G-tube comes out on the side of her, so if she's wearing a zippered sleeper, there's no opening for the tube to come out of her clothes. I wanted her to wear this penguin sleeper so badly, that I put it on anyway.

Snoozing away in the NICU

I will admit right away that I am a Carter's store fanatic.  I always know what new prints are out for baby clothes at Carter's.  And the sad thing is that Evie cannot wear many of them.

For example, the cutest little penguin sleeper is at Carter's.
1-Piece Fleece PJs
But Evie can't wear this because there's no opening for her G-tube out to the side unless I cut a hole in the sleeper.  Sad face.  Luckily last winter we had nice snap front sleepers!

http://demandware.edgesuite.net/sits_pod38/dw/image/v2/AAMK_PRD/on/demandware.static/-/Sites-carters_master_catalog/default/dwe334330a/hi-res/118G019_Purple.jpg?sw=2000&sh=2000
Another non-tubie friendly sleeper with a penguin on it. Mommy is sad Evie can't wear this one.
If you haven't noticed yet, I love penguins.

All summer, Evie mostly wore rompers from Carter's.  I was ecstatic to see that they had these, and bought as many as I could.

http://demandware.edgesuite.net/sits_pod38/dw/image/v2/AAMK_PRD/on/demandware.static/-/Sites-carters_master_catalog/default/dw6b422d48/hi-res/118G267_Purple.jpg?sw=2000&sh=2000
These snap front rompers were perfect for the summer, since the G-tube could come down the side of her leg.   Onesies were okay, but I had to hike up the side of the onesie to access the G-tube port (and give Evie a wedgie for a second), so they weren't as nice as the rompers.

Here is a onesie that I loved so much, that I got a Tummy Tunnel to try to be able to use onesies, long pants, and a G-tube.  I now regret doing it that way because it left a draft, but at least it worked when I needed access to the G-tube port.

Dresses work too, but a girl doesn't need to get all fancied up every day!

Give me a "V"!
I took it for granted that Carter's would always have snap front clothes.  That is apparently not true this season, and it's still too cold for the fleece snap front footed sleepers.  And I can't find any snap front cotton sleepers without the footed part!

Now that fall is here, we can't live in rompers anymore. So it's time for long pants!  This is a new thing for Evie and her mommy, since she wore sleepers last winter.  We were used to threading the G-tube down the leg of her romper, but it's not as comfortable for her if we thread the whole tube down a long pant leg.  So Mommy's answer to this is tunics!  Tunics and long pants!  Tunics are better than regular shirts because the length of the tunic covers up her g-tube button a little more.

Every girl should have socks with pompoms on them.


I look healthy BECAUSE I'm a tubie!

For sleeping, Evie is transitioning into big girl pajamas.  By big girl pajamas, I mean not sleepers, and actually shirt and pant pajamas.  We put her in shirt and pant pajamas, and this leaves great access for the g-tube, and then we put the Zipadee Zip sleep sack on, and she's off to dream land! 

For the full fashion story about Evie, we can't leave out swimsuits. Tubies can wear swimsuits too! Here Evie is sporting a tankini with a light beach coverup, all with a salute to her love for the United States of America.

Thanks for reading about Miss Evie on the catwalk!  She will take modeling gigs at a later date so she and Mommy can travel around the world. 

Thanks for reading, my fantastic fans!
Happy Down Syndrome Awareness Month!  We hope you are learning from our blog!

Love, Evie and her mommy


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 Syndrome, each one of them was so unique.


Our friend JJ was Evie's tubie buddy--they G-tubed and J-tubed together during the party. They are the same age--only 2 weeks apart! We intend to take pics of them at each event when we see each other so we can laugh at how far they've come in 20 years. 

Whatcha doin', JJ?

I can't wait to see Evie run around and play with the other kids!  Keep growing, Evie!  (But not TOO fast...Mommy loves cuddling with you so much!)


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. http://emedicine.medscape.com/article/1199610-overview


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. 


https://toddlerglasses.files.wordpress.com/2009/05/telleracuitycards.gif
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 perkinselearning.org by Luisa Mayer, PhD (http://www.perkinselearning.org/videos/webcast/visual-acuity-testing-part-2-acuity-cards-and-testing-procedures)
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: http://noahsupsanddowns.blogspot.com/2013/03/review-baby-glasses.html

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.





What I Want For Mother's Day

Dear Daughter: I guess the easy answer for saying what I want for Mother’s Day is that I would love a big fat nap. But beyond that, from t...