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

Hi friends, it has been awhile. Since we last wrote, Evie had a few minor procedures that we had been "collecting" in order to justify putting her under anesthesia. As soon as it was evident that we would be scheduling surgery, the part of my brain that stores away medical info for Evie kicked in, and was ready to unleash the many departments that wanted "in" on an anesthetized Evie, because "awake Evie" is not very cooperative for medical visits (and none of us could blame her!). Evie's collection of minor procedures included: 1.  Strabismus surgery to correct her eye turn (again).  For our eye nerd friends, she had bilateral muscle resection of her lateral recti and also her inferior oblique in the right eye, as well as Exam Under Anesthesia (EUA) and DCR. 2.  Punctal duct clearing/expanding--Evie's punctal duct anatomy is quite interesting and takes her tears on a roller coaster that goes up and then down, which means that her tears just c...

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...

Hi all!  Evie here. I haven't learned how to walk yet, but I found out that I can be a virtual walker and still help to raise money for Team Down Syndrome at the Boston Childrens Hospital.  Please consider donating to my team so we can help to support the Down Syndrome Clinic, which has been instrumental in my family's life in the past 2 years. Here is my very own personal page! Thank you for your support and love! Love, Evie

I thought that winter was almost over, and that we had made it without a stay in the hospital.  I spoke too soon...here we are in the cardiology unit of Boston Childrens for an unexpected stay. Evie started with a cough and runny nose, and just went downhill over the next few days. She started breathing rapidly and was crying frequently. We were told that if her oxygen saturation levels went down to 90%, that we should go to the hospital.   I called Pediatrics and the nurse said to go to the ER, and offered to call me an ambulance. Evie was smiling and playing with her toys, so I figured driving in was just fine. I emailed the cardiologist and he agreed that we should go in.   Here's Evie looking at her new accessory, aka hospital wristband.  No wait in the ER! Woot! I was affirmed by the cardiology fellow for bringing her in.  They saw her oxygen saturation levels dip a bit while we were there, and that won her a ticket to stay overnight for monitoring.  E...

It might sound strange, but I was looking forward to this day. This was Evie's first visit to the Down Syndrome Clinic at Boston Childrens . When we found out about Evie's extra chromosome at 10 weeks prenatally , we learned quickly that there was a Down Syndrome Clinic at Boston Childrens (there's also one at Mass General).  We met with Dr. Emily Davidson, the director of the clinic, and were very much reassured by our visit.  We checked in at 8:30 am and I was so happy to see other kids there playing in the waiting room. Look, Evie, I wanted to shout, there are other kids like you! Each one so unique!  I felt a certain kinship with everyone there even though we didn't say much. Parents just smiled at each other. Angela, the longtime coordinator for the clinic, orchestrated where each family went. She has a son with Down Syndrome, and he just started college this year!  The first stop was Height and Weight. Evie was 26" and weighed 16 lbs and 7...

Evie continues to surprise us. We thought we would be here another weekend. Today is Thursday, and we were discharged this afternoon! Not only were we discharged today, but Evie drank all of the formula in her bottle quite easily!  The first time, she downed 40 ml, and the second time she drank 30 ml. While this is nothing to most babies her age, this is a huge victory for her. Thank you for your continued prayers that she would eat more and more by mouth.  Today the stitches came out of her chest. The incision is already healing quite nicely.   Evie is officially taking Sildenafil. The cardiology fellow said he will always remember us because he was surprised that a patient's dad really wanted his baby on Sildenafil, otherwise known as Viagra (if she needed to go on another medication for her pulmonary hypertension). He thought at first that Daddy was trying to get some for himself, but then found out that Evie's daddy works for Pfizer and since they make...

Hi Mommy, This was a funny day. Last night instead of putting me to bed, you stayed up with me and played with me, and kept asking me to eat. I didn't want to eat. I wanted to play.  Then you hooked up my feeding tube early and we got in some extra cuddles. I started giggling because this was more fun than going to bed.  Sometime soon after that, I think you forgot to hook up my feeding tube like you usually do overnight. My tummy was hungry! I had to make smacking noises all night to tell you that you forgot to feed me on a continuous feed like you usually do!  You woke me up when it was still dark! Was it because you wanted to play with me, Mommy? I thought you did, so I smiled really hard at you and said a big hello!   We got in the car and Daddy and I both fell asleep. Daddy usually has as much trouble staying awake as I do!   We got to the hospital and got in a little room with a big bed for me. They stuck big stickers with wires on me, and ...