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

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 ...

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.    ...

This past week, I noticed that a woman in the waiting room had a teenage son with Down Syndrome. When I later spoke with her, I told her about my 2 year old daughter with DS.  Her eyes lit up, and we proceeded to speak in Spanish (very badly, on my part) about our kids. We had an instant kinship. A few days later, her husband came in and proudly showed us pictures of his son on his cell phone.  He wanted to show me that his son could ride the T with his friends.  He then showed me a video of his son dancing Latino style (very well, I must say), and we shared a "I-have-a-kid-with-DS-and-I'm-so-proud" moment. Later that afternoon, I met a man in his 60's who has DS.  He came with a caretaker, and was in a wheelchair.  He kept falling asleep while we were trying to talk to him.  He was nonverbal and pretty out of it. While they were 2 very different individuals, the contrast was completely obvious to me, right there in front of my eyes.  Growing up no...