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Showing posts from 2017

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 w

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 l

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 i

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 w

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 train

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

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

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 surprisi

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 fill

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 Boutiqu

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 cu

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 ti

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 s

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 f