Thursday, August 17, 2017

Getting some wheels at the Equipment Clinic

Somehow the visit to Equipment Clinic snuck up on me.  It was a 3-month wait after being referred by the Down Syndrome Clinic, and then I found myself trucking downtown with Evie and her entourage for the appointment.  The nanny and I imagined that the Boston Children's Hospital Equipment Clinic would be a huge room filed with all types of equipment for kids with disabilities, and that Evie would try different equipment.

We were sort of close--a long line of wheelchairs along the hallway led up to a smaller exam room. The physical therapist (PT) and a representative from National Seating and Mobility were with us.  The PT reviewed Evie's needs, which were a pediatric walker and possibly adaptive stroller. 

Rewind for a second. Evie is doing great with her ankle-foot orthotics, but she is still wanting to lean forward while she stands.  Her Early Intervention team thought that as she transitions to preschool in a few months (!),  it is a good time to ask for a gait trainer/walker, so that when she needs to go down the hallway at school, she can transport herself like a big girl.   The main take-home point I learned from our PT is that we would want Evie to have the equipment she needs to participate fully in whatever everyone else is doing, and not be viewed by the other kids as a baby.  If Evie was in a stroller to go to recess, they might view her as a baby, but if she was in an adaptive chair, it would be easier to explain that she wasn't able to walk as long as everyone else because her muscles got tired faster.  This speaks to my mama heart, wanting my baby girl to fit in and make friends when she goes to school.  

Ok, so back to Equipment Clinic.  The PT had a gait trainer and a pediatric walker.  I immediately thought that they were cute.  I can get behind a pink gait trainer any day.  It looks like it means business, but still fashionable.  Evie didn't try a gait trainer, because when she got in the walker, it was clear to the PT that Evie needed equipment that encourages her to do the work of standing up, and not relying on a gait trainer that would hold up her trunk and allow her to do the "wet noodle," which she is apt to do sometimes.  So we put her into the shiny gold walker, which essentially is used in the opposite direction as one would imagine an 80 year old would have.  This way, Evie has a seat to sit back on if she needs to rest, but nothing in front of her to lean on, and handlebars on the side to pull her walker behind her.  

Gait Trainer (Anterior)

Evie wanted nothing to do with it.  She wanted out right away.  I had to bring out the iPad just to get her to sit still.  The marketing department came by to try to get some pictures, and they turned right back around when they saw her red, swollen face from screaming.  If anyone wants marketing pics of a wailing child in your hospital brochure, we are available. 

Before we made Evie actually do some work and she started crying.

We made the executive decision that we would go with a purple pediatric walker with the seat and handlebars.  No hand straps needed for Evie--she would go ballistic. That fact in itself reflects how she could walk if she wanted to. We just need to convince her that she can do it. 

2nd mission: To discuss an adaptive stroller vs wheelchair.  I didn't walk in thinking that we would get her a wheelchair.  I always imagined that she would just learn to walk eventually, and might use a walker.  But because it takes 90 days to get equipment delivered to your house, and in 90 days she will be very close to her first day of preschool, we want to be ready.  Ready for Evie to participate in everything in which her classmates will participate.

I took one look at the adaptive stroller and thought it looked like our City Mini stroller, and said so to the PT.

Adaptive Stroller--too close to a regular stroller!

She tried to be impartial, but I could tell she agreed that it was very similar to our stroller, with the difference that it can be tilted back in a recumbent position.  The pediatric wheelchair looked inviting.  Evie thought so too, because when I put her inside the wheelchair, she crossed her legs and continued watching her iPad.  Her BFF Naomi thought this was amazing, and toddled around to the back and started pushing Evie down the hallway.  I could tell that this was the start of amazing walks to the park, with Evie possibly learning to turn the wheels herself and feel more independent. 

Evie got her wheelchair tricked out to the 9's.  She has sparkly mauve pink with a silver crossbar, a headrest, arm handles, a see-through tray for eating and also for taping a communication menu underneath so that she can always point to what she wants if she doesn't have all her verbal skills yet, and fold-down handlebars for us.  As they handed me a brochure with all the color choices, I felt like I was picking a color for a new car.  It IS kind of like a car--you're stuck with the color you pick for at least several years, and you pick out the extras that you want.  And once we get it in 3 months, maybe I will find a way to sneak penguin stickers onto it somewhere. 

Having said this, as I watch a lot of her 2-3 year old peers in the Down Syndrome community start to walk, my greatest hope is that when the walker and the wheelchair arrive, she won't need them long or she won't need them at all.  But all in Evie's own time. 

Overall, this visit took almost 90 minutes, and they gave her ample time to try out the equipment (even if she didn't want to).  The equipment company rep took measurements of her legs, hips, girth, and other chair-relevant parameters.

I am blogging about this because I want other parents of kids with DS to be aware of the Equipment Clinic.  A kid shouldn't have to turn 3, go to preschool, and THEN hear about the possibility of equipment that could help them to participate, and waste 3 months waiting for an appointment and another 3 months for the equipment delivery.  We will receive ours just in time, so that Evie can go right into regular classroom activities.  

So here's to the Equipment Clinic, and here's to Evie walking, either with equipment or without it!

Friday, July 14, 2017

A Tribute to the IV Pole from a Tubie Mom

Last night, for the first time since she was born, Evie didn't get a formula feed overnight, and she didn't even get water overnight (for hydration).  She slept like a typical child in her crib, with no hookups.  I didn't have to hook up the 24" right-angle Y-port extension tube into her tummy and through a hole in her Zipadee Zip to the G-tube pump.  My husband didn't have to prep the 500 ml feeding bag and wait until she was asleep to hook up the feeding tube.   He didn't have to wake up at 5 am to turn off the g-tube pump when the alarm said the feed was done.  We didn't have to wake up because the flow was interrupted by her tossing and turning and the alarm didn't have to go off.  SHE didn't have to wake up soaking wet because there was a leak, or because the tube somehow became disconnected overnight.

With that, I want to post a tribute to the IV pole.  It has faithfully stayed by her bed, standing guard and holding her food for 2 and a half years.  It has alerted us with rolling sounds when she wakes up and starts moving around in the middle of the night.  It has now become an interesting toy to Evie, which is another signal that it is time for the IV pole to be relegated to a dark corner, until she gets her next cold and we stand in front of it, considering whether or not we need it because she won't eat.

But, Mr. IV pole, we are so done with you!  I am ready to put my daughter to bed by just changing her diaper and zipping her up in her sleep sack, kissing her, saying our prayers, and putting her in the crib.

The only thing left is venting her tummy before bedtime, but she just gave me the biggest burp in my face last night, so it's only a matter of time until we stop that too.  Thank you, God, for all the cool medical skills I learned, but thank you even more that we are moving towards getting rid of it!

So when can Evie get rid of it, you ask?  Well, when she feels like eating enough to continue up the growth curve.  Right now, she's getting 1 full Pediasure bottle a day to supplement, so we are close!
Thanks for your prayers and for cheering with us!

Thursday, July 6, 2017

Tube Weaning and Mountains of Furniture

First Mommy, and then a note from Evie!

Mommy says:
At this time a year ago, we did a happy dance if Evie opened her mouth for any food.  She started eating more purees from pouches, and showed a love for apple and mango flavors.  But we were only counting the number of bites she took last August.  Fast forward to June, and we are counting the number of ounces she eats.  She averages 12-14 ounces a day, plus 2 boluses of 120 ml of Pedicure Peptide during the day.

She is still mostly on purees and yogurts, but we are now mixing in mashed egg yolk and blending real foods like chicken thighs and rice and mac and cheese. She still won't pick up any food and put it in her mouth, except for deigning to lick something once in awhile.  She is also sipping more liquids by mouth too, although we are counting by sips and not ounces.  She has shown that she likes my flavored seltzer water.  That wins the record for most sips!

I read on one of my many Facebook parent groups that blending real food for their tubies helped their children to increase their appetite.  In the past week, I have been blending more real foods like casserole or quinoa mixed with other foods, and am seeing a significant difference in Evie's energy levels, appetite, and willingness to eat.  Maybe we lost the first iPad wean, but I'm happy that we got the thumbs up and a "good job" from the GI doctor.  It helps that Evie has decided that she likes climbing all our furniture and burns calories in the process.  Our living room furniture has now been rearranged to a less dangerous arrangement.

Next step: weaning off her night feeds.  We are down to 50 ml of Pediasure Peptide at night mixed with a bunch of water.  We are going to say goodbye to the 50 ml next week, and then start moving the water to the daytime (somehow).   This means that she will be a lot easier to care for at night, and poor Erick doesn't have to wake up at 5 am to shut off the pump!

Evie made a list of what we've learned in the last year about helping a (medically-stable) tubie.  Hope that it helps someone!

Evie says:
Hi everyone!  I hope that you are enjoying the summer.  Mommy keeps buying me dresses and shorts.  My SMO braces make my feet hot, so I like wearing less clothes.  Anyway, enough about my feet.  I want to share with you what we've learned about my tube life.

Mommy said to comb my hair, so I did. 

1. Thick and smooth!  That's how I like my food.  Thick so that my tongue knows that there's food on there and I can swallow better.  Smooth so that I don't gag on lumpy stuff.  Some older lady informed my mommy that I have all my teeth, so I should know how to chew.  It's not that easy, lady.

2.  The Ninja blender brings me new foods.  Mommy held off on making me new foods because I was so sensitive before.  But she got brave and started blending foods like casserole or mac and cheese, and they were actually not that bad if she mixed them with applesauce!   A couple things she made were YUCKY.  I gagged right away.  And I made a sour face to convey my disgust. She had to start over with another food.   (Mommy's note: For those of us who can't "swallow" the price of a Vitamix, the Ninja blender has been a godsend and kickstarted me into making more real foods for Evie.)  **On super sale right now, 52% off! If you use my link, Mommy buys me a new book!**

3.  Real foods make me eat more!  In the two weeks where Mommy has made me more real food that I can eat, I've pooped more regularly.  I like to take up a stance at the sofa and quietly stand there until I'm done.  (Yes, I'm standing at the sofa!)  (Mommy's note: I read on a tubie FB group that the parents who had started a blenderized diet for their kids saw an increase in appetite and faster weaning off the tube.  So far so good! And yay for less constipation!)

4. Mountains of furniture.  My uncle Dave does rock climbing and I do furniture climbing.  It gets the juices flowing and the food moving, and boy, do I work up an appetite!  I chuckle to myself when I pull myself up onto the sofa.  You can't hide anything from me now!

#tbt to 2 years ago, when we went rock climbing with Uncle Dave!

5.  Daddy replaces my overnight formula with water.  I find that I wake up more ready to eat now, which makes me peppier for the day ahead!

 Mommy's latest blended concoction, approved by Evie:

  • Annie's mac and cheese
  • raw spinach
  • shredded chicken thigh
  • avocado oil
  • Happy Tot's apple and butternut squash (lots of it)

--> Split up into cubes and freeze, or freeze in 4 oz containers.  I serve Evie about 3 TB and add a pouch to it for each meal.

That's it for now!  Thanks for reading, friends!  I am excited about the fun things I am going to do this summer (but maybe not ready yet for the potty, even if Mommy put me on it for fun)!

Wednesday, May 31, 2017

Feisty is my middle name.

Along with growing taller, Evie is growing in feistiness.  She has definite opinions about everything from socks to books to how she should eat.  I didn't read on any of the Down Syndrome websites that there seems to be a theme of stubbornness in our kids (although every kid is still different!).  But as I've learned from other families, stubbornness is a very real thing.  First, she has the genes for stubbornness from both sides of the family.  Then she seems to have the extra copy of special stubbornness.   But the thing is, she's a cute stubborn.  She sticks out her lower lip and crosses her arms as she emits a "Gaaaah!"  Which just makes me laugh at her. Most of the time.

Today I am not laughing.  We decided last night to wean her off the iPad while she eats.  I was inspired by the other parents on the tube-weaning Facebook group I joined, and while I was warned that it would be tough, it is still hard to start the journey.  The first 2 meals were surprisingly fine.  She ate 3 out of her usual 4 ounces.  My voice was hoarse after singing every song I could think of, but I was pleased.  Towards the end, I had to use the audio on my iPhone and let her listen to some music, because I just couldn't sing anymore.  But it still worked.  

Enter Meal #3 sans iPad.  I want to grab her and stuff the spoon in her mouth, but I know that would be horribly counterproductive in so many ways.  So we are taking a break.  For the 3rd time.  If we were in a cowboy movie, we would be having a standoff, and Evie would be calmly reading a book while pointing her pistol at me, while I look intensely at her and wave a spoon at her face.   She would at times yell "Gahhh" and then go back to her book.  We've gone out and enjoyed the nice weather, gotten the mail, and tried again.  Gahhh! Nope. 

The feeding therapist says to be consistent and mean what I say.  She offered to take the iPad home and give it back to me when she's done with her maternity leave in September.  She was serious. I guess she knows how hard this is going to be.  But we got gushing approval today for making that decision.  

If it were just the iPad that was a problem, I would throw all caution to the wind.  But the other side of it is that there's a GI doctor and a Nutritionist sitting in rocking chairs in the cowboy movie, watching the standoff, and telling me that she'd better not lose weight.  "Stay on the growth curve," they drawl, as the tumbleweed rolls by.  A black crow caws, mocking me.  I stand my ground, throwing them a dirty look.  And then I worry that she is losing weight when we worked so hard to get back on the growth curve.  "Hey," I say, while she is only in the 3rd percentile on the typical growth chart, let me remind you that she is in the 50th percentile on the Down Syndrome chart. I'm not starving my kid!  They stop rocking as they digest, and then they say their same mantra, "Just make sure she doesn't lose weight."  

So we're weaning off the iPad and weaning off overnight formula feeds with her feeding tube at the same time.  Stroke of genius or suckers for punishment?  Time will tell.  Pray for us. Evie's just fine--it's her parents who may go insane for the next few weeks. 

Update:  1 week in, and the score is Evie: 1, Parents: 0.  She lasted a week with eating 1/3 less than usual, and we decided that weight loss at this point was counterproductive.  So we are starting with no iPad and then using the audio, and then using the screen if we need to.  With an average of 1.5 oz OFF the iPad, we have recovered now to 4.5 oz ON the iPad.  The difference is huge.  For now, we will concentrate on beefing her up and will try again once we get her off nighttime feeding tube formula.  

Saturday, May 6, 2017

My foray into the school fortress, and the winners of the Lularoe giveaway!

I unexpectedly had some time during the day after Evie's doctor appointment last week, and decided to just bite the bullet and register her in the public school system for preschool (I know! I'm not ready yet either).

I had no idea.  I had no idea the level of bureaucracy involved for preschool.   Just to get in the building was a challenge.  I had to walk all the way around to find the ONE set of doors I could enter (totally smart to keep our children safe), and then buzz the doorbell to be let in by the security guard.

Then I had to wait for the administrators to finish chatting with each other before I could go in the office for registration.  Then the lady asked me if I had the birth certificate, utility bills, immunizations, physical, and license.  I proudly and confidently said yes.  Then she asked me if I had filled out the registration packet, and I felt deflated.  She handed me a 15 page packet and told me to tell her when she was ready.  I stood there and filled out the packet, frantically searching my phone for phone numbers and other info.  I stated that Evie's only language was English, remembering how my little brother had to take the TOEFL because my mom wrote on the form that his first language was Mandarin.  I had to write on a blank piece of paper that I was officially requesting a special education evaluation for Evie.  The lady informed me that I would have to contact the evaluation office.  I smiled in victory, saying that our service coordinator in Early Intervention had already sent everything over.  She looked surprised that I had dodged an extra step in her bureaucratic game, and acknowledged a point for me with a look of surprise.  I finally finished the paperwork, and the lady buzzed around, doing her thing, and then I was sent to the school nurse to show her the immunizations and copy of the physical (thank you, Boston Childrens for having everything available to print on the portal!).

Walking through the high school to the school nurse's office felt surreal.  This 70's-ish building felt like something off a movie set.  I got lost, asked someone for directions, found my way across a skybridge, and then found the nurse's office.  The nurse reviewed the papers, and informed me that I was missing the results of a lead test and a TB risk assessment test.  I was given a business card with a fax number on it, and sent on my way.

I almost just went out the closest exit door.  But then I realized that maybe this would trigger some kind of alarm.  God forbid that I caused any trouble even before my child had entered the school system.

This probably seems like nothing to the veteran moms who have done this for their kids.  But for a first-timer, it is the first step of a big adventure into the unknown.  I am signing Evie up for a huge milestone full of unknowns.  Will she walk by December?  Will she need the nurse to give her milk through her feeding tube?  Will she have friends?  And then there's the question of whether she will get the support she needs--occupational therapy, physical therapy, speech and language therapy, andvision (mobility) assistance, while being able to be included with her peers.  It's a huge undertaking to get a child into school!  I am thankful for the many parents who have gone before us, especially in the special ed arena, so that I can learn from their experiences.

In the meantime, I am just going to enjoy Evie before she becomes a little schoolgirl!  My baby is growing up!

And now, to announce the winners of the Lularoe giveaway!
Grand Prize: Kim W.
2nd Prize: Kristy L.
3rd Prize: Diana L.
I will e-mail you with more details about how to get your prizes!  A huge thank you to Lularoe DressWell GiveWell for her generosity!

Tuesday, April 25, 2017

Mommy and Me, my Obsession, and a Giveaway!!

I'm not sure when it occurred to me that I could dress to match my daughter.  I think maybe when I was looking back in old photo albums and remembered that my mom had sewed matching dresses for us to wear.  I am not as handy with a sewing machine, so that was not an option.

However, the day that I saw such a thing as matching Mommy and Me leggings on a friend, that was the day that a monster was created.  That monster is my obsession with matching clothes for me and Evie.

In case anyone else has a Mini Me (and this doesn't apply just to daughters!), here are some good sources of matching clothes: regularly has specials on matching leggings, and usually for something like $7.99 per pair.  They have really cute prints.  I started with leggings, but then saw matching skirts and got those.  Then I saw that they had matching Daddy ties and Daughter dresses, which I thought was adorable, but didn't get to them before they were sold out.

The Ritz Boutique
My first few pairs of matching leggings was through The Ritz Boutique.  They have a cute selection of prints that seem to change by the season.  They also have other cute baby accessories.  Ritz Boutique sometimes has special deals on

Sporting the Aztec print from The Ritz Boutique

Old Navy
If you're on top of it and check frequently on the website, Old Navy often has matching or similar prints when they come out with the choices for the new season.  They have an actual Mommy and Me site: I still haven't found the perfect match, but they definitely have coordinating pieces.

This is where I essentially became obsessed.  You can't beat the buttery softness of the Lularoe leggings.  I was willing to overlook that and not spend the money, but then I found out I could get a matching pair for Evie, and I couldn't say no. (Thanks, Jennie!) The thing that makes you obsessed is that they only make several thousand of each print, and then you can't get it anymore.  So when you see a print that you want, you just HAVE to buy it, because you may never have the chance again!  These leggings are only sold by private consultants through Facebook or pop-up shops.

Valentine's Day matching leggings!

And now I'm not just looking for the leggings.  Now I've discovered that Lularoe has matching dresses for mommies and daughters, and I they also sell shirts for boys with complimentary patterns!
The best part is, if you buy a Scarlett, which is the new dress model for girls (2T-12), they donate $1 to the National Down Syndrome Society because the owner of Lularoe has a granddaughter who's rocking the extra copy of the 21st chromosome!
Squinting in the sun, but showing off our matching Mommy and Me Scarlett and Nicole dresses!

Evie wearing an Adeline and I'm wearing a coordinating Carly dress at the MA Down Syndrome Congress New Family Social!

One more thing about Lularoe.  I'm happy to spend the money, because it helps to empower women (and some men) who want to have a small business (There is such a thing as a Lulabro!).  In addition, I want to highlight a DressWell GiveWell, which is run by a friend in Austin, TX (Thanks for the intro, Julie!).  DressWell GiveWell's vision is to partner with outstanding organizations who strategically give to those who come from abuse, neglect, or poverty, whether it's locally or internationally.   If you are on Facebook, check out the Lularoe business for DressWell GiveWell!   Please check out their website at to learn more about their business and mission.

I have not found these yet, but apparently Gymboree makes Mommy and Me pajamas!

This takes some hunting, but it's possible to find some cute matching patterns!  I was determined to find Evie and Erick a matching Easter outfit!  I found Erick a nice Easter tie to match her dress.  What do you think of this combo?
My favorite people in the whole world
I want to say that no matter what clothes Evie wears, she is beautiful!  I am thankful for the friends and family around us who constantly tell us that they agree.  I can't believe that when we first found out that she had Down Syndrome, that I was worried about whether or not she would be cute.  She is even more perfect than I ever imagined.

DressWell GiveWell has generously offered to do a giveaway with us!
Grand Prize: 1 matching set that will be either matching leggings or matching Mommy and me dresses, depending on size availability to match the winner.  (This is optimally for a mommy-daughter set, not for mommy-son set.)
Second Prize: 1 pair of surprise adult leggings
Third Prize: 1 pair of surprise kids leggings
To enter, please comment on the blog (not on my Facebook wall) where you would wear your matching outfits!  Entries will not be taken after midnight on Saturday, May 6. Winner will be picked on Saturday, May 6 by 10 pm!  (Be sure to include contact info!)

a Rafflecopter giveaway

Monday, April 24, 2017

From Starfish to Flying Squirrel, and Evie's Book of the Month!

The time has come. Evie is too long to be a starfish anymore.  I tried to keep her as one for as long as possible, because as a starfish, she wouldn't be able to grab her g-tube extension tube at night very easily.  But as she gets more active and grows taller, it's time to transition to a flying squirrel.

If you caught my blog almost 2 years ago about starfish, you will know what I'm talking about.  The Zipadee Zip made by has been so life-changing for us, as it kept Evie sleeping longer and also contained her arms so that she wouldn't grab her g-tube as much. Most kids would transition to just wearing pajamas now, but because Evie is still on her feeding tube (until she decides to eat more), we need something in-between.

Enter in the Flying Squirrel, also made by  This sleeping suit allows legs to be legs and arms to be arms, but the cuffs on the hands and the feet allow for either freedom or slight restriction by folding the cuffs back over the hands/feet like mittens and socks.  I want to add that the Zipadee Zip comes in bigger sizes, and we could do this, but Evie has taken to pulling her arms in and playing with them inside the Zipadee Zip, so that makes her higher risk for grabbing her g-tube button right out of her stomach if she's bored.  The Flying Squirrel allows her to have her arms, but keeps her g-tube nicely covered.

Here is a photo comparison:
Little baby Evie in a Zipadee Zip way back when
Big girl Evie in a Flying Squirrel!

Evie ROLLS.  She rolls so much when she sleeps.  She also kicks me in the face and other sensitive areas while she sleeps, if she happens to be with me in bed.  So I'm still trying to figure out if it's better to keep her in a Zipadee Zip or Flying Squirrel.  We alternate between the two, and I would say that she "might" roll a little further in a Flying Squirrel because she can use her legs unhindered for more momentum.   For a kid who is 2 and not walking yet, it won't make too much of a difference, but once she can walk (please God, let her walk by the end of this year--my back is killing me)....Flying Squirrels all the way!

(I received a Flying Squirrel to review, and am so thankful for the opportunity to review them. I've already stocked up on my favorite prints for when Evie is taller and walking!)

Update on Evie's eyes: She is having less of an eye turn, but I can already tell that she is going to need at least another touchup surgery.  We're making progress though!

Update on Evie's ears:  No real change noticed by having ear fact, ironically she had a lot of pain on the airplane with the change in cabin pressure, which is the opposite of what usually happens! *shoulder shrug*

And....drumroll please....Evie's Book of the Month is:

She makes us read this book and "Click Clack Moo" over and over again. I can recite them in my sleep.  Thankfully, these authors are actually kind of witty.

Oh, what the heck, I'll throw in Evie's Food of the Month, since it has taken me about 3 months to get this blog post up!
Evie's Food of the Month is:
Siggi's 9% Yogurt.  9 percent!!!

This yogurt has extra fattening good stuff in it, as opposed to the usual Siggi's 4% yogurt.  A typical breakfast for Evie has been a 100-calorie pouch like  Happy Tots' spinach, mango, and kale, + Siggi's yogurt + avocado oil + a scoop of Duocal.   She's still doing Pediasure by feeding tube, but we are making gradual progress by reducing her overnight feeds bit by bit.  Yay for progress!

Thanks for reading!