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

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. ...

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 read...

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 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...

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, wh...

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 th...

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 ...