How old are you, Evie?


Dear Evie,
I can not believe you’re 3 years old today! You have brought joy and so much life (and less sleep) to Mommy and Daddy. In the past year, you have become so animated and curious about your environment. Calling you “my little troublemaker” has made me so happy, because it means you are getting stronger and able to explore on your own. You love horsing around with Daddy. Your infectious laughter when we put something on our heads to be silly turns a hectic day into the best day.  When we read "Daddy Hugs," the last page of "Goodnight, Dada" sets off a long monologue about Dadadadada and how much you love Dada.  

I think you know how loved you are, Evie.  Mommy and Daddy can’t stop kissing and hugging you, and sometimes you surprise us by spontaneously giving us open mouthed kisses to show your love.  You have definite reading preferences and want to put on your own socks...on the same foot. You like purses, even when they belong to ladies we do not know.  You are doing great with your walker, and going longer distances now.  You climb stairs like a champ.  When mommy's not looking, you put random things in the closet or cabinet to surprise me later.
I'm 3!

Mommy was a little nervous about your 3rd birthday. Turning 3 meant that your army of therapists, who have been such a part of our lives, were unable to come to our house anymore.  3 meant that you are a big girl and that you will go to school.  But in the last few months, you have showed us that you are ready to go to be a big girl at school, and that you will love it.  You will learn new words, meet new people, and have new experiences.  We are so proud of you, Evie!   Happy Birthday, my precious girl!  May this year be full of joy, growth, strength, and fun experiences!

Enjoying birthday chocolate mousse!
Love, 
Mommy



Our very first IEP: Achievement unlocked!

Today was the big day--the IEP meeting.  I've been primed to dread this day for years--pretty much once my baby was born and I started joining special needs' forums online and heard about this mysterious IEP when your child turns 3.  I hope that I can share our experience to help someone, knowing that every child's experience is different, and every town is different.  I will say that we have had a wonderfully smooth and informative experience!

Here is a timeline of how things went down for Evie's entrance to preschool.

1.  6 months before she turned 2, we started hearing scary phrases like "when she turns 3" and "IEP" and "transition planning meeting."
2. Transition planning meeting: Evie's entire EI team congregated in our living room and talked about her skills and goals.  In my mind, this is probably when I made the transition from "coddle-the-NICU-baby" to "treat-my-daughter-like-a-big-girl."
3.  In the last remaining months with our EI team and the Down Syndrome Clinic team, we were able to get a posterior gait walker ordered and a wheelchair for transport to get ready for school (these take about 3 months to come in!).
4. Our EI made the referral to the new school district.  We promptly received paperwork and scheduled a visit from our friendly preschool coordinator (who is AWESOME).  She came to our house and spoke to us about what to expect.  This is when I handed her the handy "All About Me" summary sheet that I blogged about in my last entry.
Credit for this goes to: https://our3lilbirds.blogspot.com/2017/05/how-to-make-one-page-profile-ellie-style.html

5.  Filled out a 20-something page questionnaire on Evie's skills, goals, dislikes, likes, health history, etc.  I had to remember how much she weighed at birth, which amazingly I had to ask my husband for, because I was too out of it when she was born.
6. The Evaluation happened (per my last blog entry), and we got back a long narrative about her scores on the Battelle test way back when she was barely 2 years old, the skills she exhibited when she visited preschool, and a list of goals and accommodations for each category (PT, OT, Communication, Social/Emotional, Medical).  This can happen in playgroup, in the home setting, in school, etc.  Our coordinator came to our house twice to observe Evie at home to make sure she didn't miss any skills that she had missed when Evie was shy during her team eval.
-->I would say that either at the evaluation or shortly thereafter is the time to send videos of your child's signs or send the the summary sheet.  This is when they are formulating their perception of your child's skills.  By the time you are in the IEP meeting, they have already formed their perceptions into words, and are harder to convince otherwise. 
7.  The IEP.  

That brings me to today!

We went to the IEP meeting with 2 therapists and our current service coordinator.  We were told by many friends to bring an advocate, but I was also warned that bringing an advocate straight off the bat can be seen as a negative thing during the first meeting.  We thought a nice balance was having our former therapist there, who knew our family and Evie very well.  We also didn't expect too much of a challenge though in getting services.  The meeting was well planned out.  We were given a chance to voice our overall goals and concerns, and then we went through the written evaluation step by step.  I will take you through ours a bit just to give you an idea:

Overall: Evie will be assigned a 1:1 aide, so that she always has personal attention.  This is more for safety reasons according to the school, since she doesn't walk or talk or eat safely yet.  She will be in an integrated classroom. Half of the kids have special needs, and the other half are kids from the community.
The school day will be a half day, starting at 8:30 and ending at 11:45 am.

Medical: The nurse wrote a very thorough summary of Evie, starting from birth. (I had a little PTSD episode as she was reading the NICU stay, the heart surgery, and the traumatic 42 days in the NICU trying to get Evie to gain weight!) I had provided her not just with immunizations, but her NICU discharge notes, and notes from every single specialist she has seen (and we have a small army).  She really appreciated all the medical notes.  If you are on a patient portal and you can download the chart notes, the nurse will love you.

We discussed the care for her g-tube, and how we will feed her at school.  Because Evie has strabismus and amblyopia, her visual needs in the classroom still need to be assessed. The school will bring in a teacher for the Visually Impaired to assess how to support Evie.  In addition, if Evie needs a feeding therapist as the year goes on, the school is willing to bring in a private therapist during the school day to do a consultation for them to advance her feeding skills.  Amazing!!

Communication: Evie uses more than 100 signs.  We provided selfie videos of Evie happily doing her signs, so that the team could build an understanding of her vocabulary.  She will be able to use Total Communication, meaning signs, words, PECS boards, and other electronic devices to help her communicate.  I asked for a copy of whatever tools she uses at school so that we can do the same at home.  Evie will be getting a binder of her PECS boards for use at home, and insurance may help with covering some of the devices due to her diagnosis.   She will have 2 30 min sessions a week in the classroom.

sample PECS board from board maker.com

Occupational Therapy (OT): We discussed what Evie will be playing with, like taking objects out of a box while holding the box in one hand, and placing objects back with accuracy.  I got a little excited and asked if I should buy her a peg board, but the OT said to wait until they get to know her better, and then they will let me know what to get to reinforce skills at home.  She will have 2 30 min sessions a week in the classroom.





Physical Therapy (PT): Evie will be working on her walker and transitional movements in 2 30 min session a week in the class and out of the classroom.  They have a neat therapy room with a ball pit, a swing and a slide, so I think she will have fun!

Evie will get lots of playground time!
Social/Emotional:  Working on interaction with peers, making requests without prompting, participating in group activities, etc. This happens throughout the day in her classroom, so the teacher is in charge of that.  Evie's class has 15 kids and 2 teaching assistants, plus her own aide.  We visited the classroom, and the kids were sitting at the table quietly, working on activities.  It made my mama heart happy to feel the warm and fuzzy atmosphere in the room.

Summer School:  There was no question that Evie would get summer school.  They stated they do not want her to regress.  So that was nice to hear.

By the time we were done, my stomach was growling.  The whole meeting took 2 hours, and it was already quite straightforward!

What's next?
We will visit Evie's new classroom, first when no one is there, and then when the kids are there.  Evie also has a social story (i.e. book) that I made with pictures sent from her new teacher.  This social story helps her to hear about what will happen, and to see pictures of the new people in her life. It worked so well with our new home, so we are hopefully it will happen again with her new school.

Vistaprint.com was helpful for a quick turnaround!  I also love PintSize Productions. They make board books of excellent quality. 



All in all, we feel very supported and the whole team was excited to have Evie join them.  I can't wait to see how Evie grows in the next year!


How to be evaluated by 6 people when you're almost 3.

When you are someone just starting on the Down Syndrome journey as a parent, you learn to dread the IEP (Individualized Education Plan).  What comes before this is the dreaded evaluation, where your child's under-developed skills are put into words all at once.

Today was Evie's evaluation day.  I want to say right now that we had a great experience.  It wasn't horrible at all.  But our experience may be completely different, depending on the town, the staff involved, and the child's needs.  I thought I would jot down my thoughts here, in hopes of helping the parents who come after us.

1. You go through a ton of paperwork. Not only do you have the school district paperwork that everyone else has, but you have a packet of forms to fill out about your child's needs for each category.  This is the first achievement.

2. You hear from the schools about the date of the evaluation.  Having an actual date makes you hyper aware that something is coming, and you try to ignore it and try to concentrate on making the most of the few Early Intervention therapy sessions your child has left.   You make you child do double the amount of walking in her walker down the hallway, like any good tiger mom would do.

3. The day of the eval comes.  You have e-mailed back and forth with the preschool coordinator, and have established that you should bring a stroller, the walker, and the child.  It is a 60-75 minute visit with the following players:
OT
PT
Speech
Preschool Coordinator
Nurse
Potential Teacher

4. The Preschool Coordinator comes out in the cold to help you grab the walker while you are wrestling your child into the stroller in the parking lot.  You immediately feel cared for.

5.  You roll down the hallway, pass the "big" kids of the elementary school, who all wave at the "baby," and you go to the gross motor room.  It is established that the OT will play with the child while the rest of the observe from a short distance.

6. You sit down on the floor with your child, and start exclaiming how awesome the little colored cogs are that are being handed to your child.  Your child does not fall for it, and goes for a huge hug with mommy.  After a few minutes, she is enticed by the wooden farm animals and the string that holds them together.  She is able to transition off your lap and starts playing well with the OT.   You sigh in relief.

7.  The potential preschool teacher comes in, and it feels like a first date. Will she fall in love with my daughter?  You ask how it will work with communicating, and how people will learn her signs. You throw out the words "one-to-one" assistance to see what the response will be.  The coordinator immediately picks up on it and says that your daughter will definitely have a one-to-one.  You want to hug and kiss her because you don't need to advocate for that.

8.  You move to the play area with cushioned mats, and your daughter is simultaneously in love with the ball pit and terrified of being away from Mommy.  She protests at being in the ball pit with the stuffed sharks, and asks to come out.  They take that as a good sign of communication.

9.  The walker is brought in to try to get her to demonstrate her new walking skills. She refuses.  You all sing Laurie Berkner's "We Are The Dinosaurs" and she deigns to take a few steps.  Thank you, Laurie Berkner.  I will send you something for Christmas.



10.  Your daughter signs "All Done."  She has decided that we are done with this little private party.  We go and visit the school nurse, talk about her medical needs, and then wave goodbye, blowing kisses to everyone as we go out the door.  They are all charmed, and you are relieved that she didn't throw a tantrum.  Your child starts to meltdown as you get her in the car, but you made it.

Notes for future reference, now that I've gone through the experience:

  • If Evie had woken up early, not eaten enough, and been a cranky toddler who refused to do anything the whole time, that would have been fine too.  She would have gotten ALL the services, because they would have assumed the worst.  So this eval wasn't that scary for proving that a child with Down Syndrome needs assistance. 
  • I brought a MacArthur Word Inventory, which was given to me by our EI speech therapist. This is a list of common words for children, and categorizes them.  The school speech therapist loved that I brought this.  I counted, and Evie already says more than 100 signs!  The goal before she starts school will be to produce a video of me signing the signs that Evie will do (unless I can get Evie to star in the video), so that the staff can understand how she communicates. 
  • If you haven't done the Summary sheet for your child that was started by one of the moms online on www.canva.com, I highly recommend it!  This gives an overview of strengths, what doesn't work, what does work, and what the child is working on, as well as a photo of the child.  A quick snapshot of the child really helps new caregivers.  The school staff kept thanking me for this.  Here is a link for directions from the creator of the summary sheet: https://our3lilbirds.blogspot.com/2017/05/how-to-make-one-page-profile-ellie-style.html

  • I started an IEP binder that I downloaded online.  I'm not sure how much I will use it, but it makes me feel good to prepare.  You can download this at: www.adayinourshoes.com by Lisa Lightner.

THE END...for now...until the IEP meeting in 45 days!  (You receive a copy of the IEP document 2 days before the meeting.)

Updates on Getting Closer to 3

Tomorrow is a big day. It's Evie's evaluation for preschool!  Our town has a great integrated preschool program, and once she has her evaluation, we will have an IEP meeting to decide what resources she needs to help her to succeed in school, and then off she goes!  *sniff* my baby *sniff*

Evie has had a great 3 months in her new house!  She learned to climb stairs in the first couple of weeks.  We definitely have enough of them (3 flights!)!  Our new physical therapist had a pediatric walker to lend to us, and Evie took to it quite quickly.


I couldn't believe my eyes when I took this video!  I didn't want to cheer too loudly, because cheering makes Evie cry.  But I was jumping up and down inside!

Evie's eating has slightly increased in texture, and also we are trying the straw juice box again.  She is taking small sips of applesauces-water, but still not sucking on the straw.  She is also scooping up food herself from the bowl every once in awhile when she feels like making our day.  

Stay tuned for the next post when I have a lot more to say about entering preschool!


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!


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!

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)!

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.  

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!


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

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!

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!

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!)


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.

Evie's Brave New Ankle World

Evie's world has changed for the better.  She got SMO's, or AFO's. I've heard a lot of acronyms, and this was just another set of them until I realized what they really meant.  Supramellar orthotics or ankle-foot orthotics help a child to feel more stable so that they can learn to walk.  In Evie's case, her ankles were so weak that she would try to keep her legs stiff so that she didn't feel so unstable.  She was really afraid of falling over, and I don't blame her.  Meet the cutest little SMO's you've ever seen.  
When you go to the orthotics place (we went to NOPCO, which is a veritable empire of orthotics centers all across the region), they will take measurements of your child's foot with a measuring tape (hopefully not necessary to make a cast of their foot).  We waited a month for this appointment, so I would advise not waiting to make that appointment. You need a note of medical necessity from the doctor to got here.   

Evie did not like having her feet touched, and I had to hold her down.   But once we got the measurements, we got to pick the little design and the color of the velcro strap.  We waited 3 weeks, and then right before we went on a plane for Christmas vacation, we stopped by and picked up her SMO's. 

Then the fun part--shopping for shoes.  The following brands were recommended to us:
  • Stride Rite
  • Keene
  • New Balance


We didn't have much luck with Stride Rite, but I know many families who love them.  They just didn't have a great selection of high tops in the store that we went to, and were pricier than I expected.  The New Balance shoe that I ordered didn't come up as high as I wanted.  But the Keenes that we ordered on Amazon--I absolutely love them. 


Here's Evie wearing her Keene's.  When she started wearing her SMO's, her posture immediately changed for the better.  Her legs weren't flopping all over the place, and she was happier about standing when we made her practice.  Her crawling seems to be more confident too.
Someone crawled into the shower when Mommy wasn't looking!

When we first got the SMO's, we were given an instruction sheet about how to use them.  We were to build up wear time gradually, from 2 hours a day to 8 hours a day.  They then scheduled us for a 1 month follow up.   I then proceeded to buy more shoes after knowing that I had to go 2 sizes up to make them fit.   Evie has a nice repertoire of shoes now--classic (Keenes), silly (sparkly hippos), and trendy (black "Timberlands"). 



Evie honestly doesn't mind the SMO's.  I think she knows that they make her do less work when she uses her legs.  Here is a picture of her Chinese New Year outfit for 2017.  What you don't immediately know is that this was the very first picture I have of her standing unassisted.  She is leaning back against the chaise, but this is a huge improvement to standing and leaning forward onto a table in fear that she would fall over.  

I did wonder what would have happened if we had started SMO's sooner, but I believe that they were not brought up yet because her core was not strong enough.  Evie is a lot stronger in her core strength now, which makes a huge difference.

I will leave you with an image of Evie's very first piece of artwork that she brought home from playgroup.  I believe it is absolutely brilliant in every way, but maybe I am a little biased.


The best $9.99 I ever spent

I used to think that the best way to spend $10 was to buy cider donuts fresh from the farm. But today, something else gave cider donuts a ru...