Evie the Extraordinary and Her Mommy: The Journey As We Go

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 ladi...

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...

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, an...

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 bow...

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...

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 ...

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 Facebo...