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:

Jane.com
Jane.com 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 jane.com.



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: http://www.oldnavy.com/products/mommy-and-me-outfits.jsp I still haven't found the perfect match, but they definitely have coordinating pieces.

Lularoe
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 www.dresswellgivewell.com to learn more about their business and mission.

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

Macys
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.

Ok, GIVEAWAY TIME!
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 sleepingbaby.com 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 sleepingbaby.com.  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 tubes...in 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!

Thursday, February 23, 2017

Evie's Surgery, and Asian Ear Wax

I want to talk about Asian ear wax, but should first say that Evie is doing well!  It felt wonderful to have people checking in on us on text and Facebook. 

The day started at 4:45 am today, so if this post seems delirious, it's because I am delirious. 

For the benefit of someone who might go through this one day at Boston Childrens, first we went to the Surgical Unit on the 3rd floor of the main building, and checked in.  We waited in the pre-surgery waiting room for a bit, where Evie waved at everyone.  Then we went into the pre-op area, where she kept smiling and laughing, thinking we were having great fun.  We met with each of the 3 surgeons and the anesthesiologist to discuss the procedure and sign consent forms. Erick ended up taking her into the OR (he had to gown up) because she fought the medicine to make her sleepy with every ounce of her toddler-ness (that is a word, once you have a toddler).

Evie first had ear tubes put in, which is called a myringotomy. The tiny tubes drain fluid from inside the ear.  This only takes 4 minutes, so they didn't let us go downstairs for breakfast until we heard from the ENT surgeon. He came out and told us that some fluid had drained from her ears, but they were pretty clear. 

She did have a lot of ear wax. Apparently she has Asian ear wax, which I didn't know was a thing. It's not like people go around talking about the texture of their ear wax. According to the ENT (who was Asian himself), Asians have dry and dense ear wax.  This has been confirmed by at least two Asian people today--one scientist and one cardiologist (go science!).  I am sure we are all better off for knowing this information somehow. 

The second procedure was the removal of extra tissue that had formed around her g-tube site. The surgeon explained that he did not think it was the right time to remove it, because skin had grown over it.  When she weans off the g tube for good, he will surgically close it and remove the tissue then.  

The third and fourth procedures were with Ophthalmology.  Dr. Dagi was awesome.  She aimed to reduce the amount that Evie's eyes were both turning in, and the left eye also was pulling up into the corner a bit, so she adjusted the muscle responsible for this as well.  It seems likely that she will need at least a second adjustment at some point, but this is common as kids grow. The lacrimal probe of her tear ducts showed everything to be clear, despite some anatomical differences in her tear pathways that cause her eyes to be watery.  We are hoping she will grow out of that on her own, but she will have watery eyes for awhile now. 

Surgical procedure to fix an eye turn is to shorten or re-attach the muscle further back (Source: improveeyesighthq.com)

The tear drainage system--Evie's was clear! (Source: https://pediatricimaging.wikispaces.com)

Brave little Evie was in surgery from 8:30 am to 12 pm and then went into recovery, where she proceeded to scream her disappointment in all of humankind for making her undergo such torture.  It's a tough thing to watch your child look so confused, scared and in pain.  We did all the parental things, such as rocking her, singing to her, and telling her her favorite stories, but what made her stop crying and open her eyes was Bob the Train on YouTube, singing Itsy Bitsy Spider.  It was like a switch turned off and the crying stopped instantly once she felt my phone in her hands. That's a tip for anyone with a toddler coming out of anesthesia if your kid won't stop screaming!  

We settled into the PACU for what we thought would be a long day.  I think now that they over prepare you.  Initially I was told that we should expect to stay the night.  Then we were told that it would be a very long day.  Then an hour after we saw Evie in recovery, we were told we could probably leave in 20 minutes.  We were very pleasantly surprised, and bundled up a very grouchy but lively Evie.  

Evie came home and immediately went to her books.  
Crazy hair, don't care

She is very cranky, but we are so happy to be home.  Home with crazy hair, bloody tears, and bloody nasal drip. Oh, and apparently toddlers at 2 and 3 years of age are likely to be hyperactive after anesthesia wears off.  Now comes lots of ear drops and eye drops for a few days and hopefully catching up on sleep for all of us.   But we are grateful she came through with flying colors! Thank you so much for your prayers and good wishes! We felt them!

Wednesday, February 22, 2017

Tomorrow is surgery day

Evie is going in for her third surgery of her life tomorrow.  I am both excited and dreading this. 

Excitement: As a result of this 4-in-1 surgery, Evie will hopefully see better, have less of an eye turn, hear better, improve her speech development, not have watery eyes as frequently, and have less extra tissue around her feeding tube site.

Dreading: That moment when I walk Evie into the OR with the nurses and watch them put her to sleep.  I know it's a bunch of minor procedures, but I don't know if I'll ever get used to this.  My friend said it gets better with each procedure. 

But hey--it's not open heart surgery!  We already did that with flying colors!

We are currently waiting for the day surgery nurse to call with the time for her surgery tomorrow.  After waiting for 4 months for the surgery, I have been terrified that somehow we would have to cancel the surgery date.  Evie got her winter cold over with last week, and then I hid the baby ibuprofen away so that we wouldn't accidentally give it to her within 10 days of the surgery date. I winced whenever she high-fived someone, telling myself not to be such a germophobe. Tonight she will be fasting, and we will zip into Boston because there will be no traffic at freaking early o'clock (~5:30 am).  Surgery should take in total about 5 hours, give or take how it is with 3 surgeons taking turns in helping Evie. 

Stay tuned for what it's like to have strabismus surgery, myringotomies, lacrimal dilation, and g-tube granulation removal! 

If you're the praying type, please pray that Evie will do so well after the procedures that she can go home with us the same day.  As much as I love Boston Childrens Hospital, I hate sleeping there, and so does Evie!

Evie and her doll Charlotte (note the eye turn, which we are hopefully saying goodbye to in 1 day!)


Sunday, February 19, 2017

Evie has a lot to say

Evie had made some great strides in communicating with us.  She was at first only signing "please" for everything. Please I want you to pick me up, please I want to stop eating, and please open the box.  That got very confusing for us, and frustrating for Evie. 

Now Evie has refined her talking points and it's so much easier to know what she wants. Thank you, Rachel Coleman and Baby Signing Times!!  

Talking Point #1:  Open. This can either be signed for open a box so I can wreak havoc with its contents, or to denote that the doors on the bus open and close.

Talking point #2:  Music.  By running her hand down the other arm in a vague fashion, Evie tells us that she would like to watch music videos on her iPad. She does this more and more ferociously until we understand just how much she would like to listen to music. 

Talking point #3:  Yes.  This one's new! If we ask her a question and then ask her if she means Yes or No, she signs Yes with her fist.  This is handy when she keeps asking us to change the song, until she hesitates and we ask, Do you like this one? And she signs Yes emphatically. 

Talking point #4: Cold.  When it's time to put on her coat, we sign that it's cold, and then she does it. Cutest thing ever when she holds up her fists and pretends to shiver!

Talking point #5: Up. Evie loves to crawl over to us and ask us to pick her up. Highly effective when she makes puppy eyes. 

Talking point #6: Change.  Evie has now grasped the idea that if you don't like the song, you can change it. Or mommy can change it.  This sign becomes coupled with loud whining if she particularly does not like the song. There have been a couple times where I can't say I blame her--the songs were quite badly sung. 

Talking point #6: Love.  Sometimes Evie will suddenly lean over and kiss us.  We tell her we love her and do the sign for love by crossing our arms over ourselves.  It's amazing how many baby books have the word Love in them. Every time Evie hears the word, she makes the sign for Love.



Talking point #7:  Please.  This sign basically says everything else Evie could possibly want.  My next goals are "clean up" and "let mommy sleep." 

When is a good time to start Baby Signing Times?  I think every kid is different.  For Evie, she didn't really start paying attention until around 18 months, even though I tried to show it to her around 12 months.  But I have friends with kids with DS who also started watching around 6 months.   

A tip: sometimes the Signing Times company will make their digital version on sale for $5 and you can use their app to access whatever you buy.  Also, Evie prefers the Baby version as opposed to the regular version, but some kids are the opposite. 

I am glad that Rachel Coleman of Signing Times has won an Emmy for her programming.  She has really changed the world through helping kids to communicate, and that's not an exaggeration!  Evie has moved on from Baby Signing Times to Rachel and the Treeschoolers on Kids Youtube.  Rachel Coleman does not disappoint.



Some good first words are here: http://www.babysignlanguage.com/chart/ Our Speech-Language Pathologist made laminated flash cards that have pictures of her plastic food toys on one side and the sign language motions on the back.  I am a little intimidated by the sheer number of signs, but I will chip away at it!  One day, the sign for hot dog will be very handy.  I'm sure of it.

Signing 'Open' or sheer excitement? You decide!
Evie has surgery for her eye turn (strabismus), ear tubes (myringotomy), and to remove granulation tissue around her g-tube.  We are taking advantage of her being under anesthesia.  Go big or go home, right?  Thanks for your prayers that everything will go smoothly and that she won't have to stay the night for monitoring.