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

Evie's eye turn has been getting a bit more pronounced. Her eyes switch off to turn in towards her nose most of the time.  This is called intermittent alternating esotropia (if they turned out, it would be exotropia).  My initial post about eyes is here . She also has huge epicanthal folds, which is basically the extra skin that covers the nasal corners of the eyes, and can make an eye turn, known as strabismus, look larger than it is. I was hoping she would grow out of it, but my observations were confirmed at her last ophthalmology visit.  The size of her eye turn had doubled in the last 8 months.   I could have brought prism bars home from work to measure them, but there's just something about doing an exam on your own kid--I am too biased and emotionally involved to do it myself. Here is Evie with an eye patch!  We are doing it every 30 minutes on her right eye, because her left eye is the one that turns in more often. If we teach the le...

I took sitting for granted until Evie got occupational and physical therapy.  First I waited for her to sit up on her own, and then once she did, I learned there was the right way and the wrong way to sit. Sometimes I'm just so proud that she got to the next milestone, only to find out that there's another one that we are aiming for that she's not doing "correctly." For instance, while she sits up for long periods of time now, the way she sits is to stick one leg behind her to give her more stability.  Or she "tripods" and leans on her hands.   The right way is to "ring sit" so that she can strengthen her core, and ideally she doesn't need to prop herself up when she gets tired. Sticking a leg out to balance herself I must stick one leg out at all times and rest my hands on my knees. Sitting is hard work! Ring sitting! But still leaning on my knees. Not too shabby!  Sitting like a champ.  But who needs to stay still?!...

Evie has had a busy month!  First she got the norovirus and gave it to Mommy, Daddy, our nanny, Yin-Yin, Ah-Gong, and Ah-Ma.  Then she started teething again and is getting in her 2 front teeth! On Palm Sunday, Evie got sprinkled!  That is to say, Evie got baptized!  I've been waiting for this day for almost a year. Evie gives Pastor Dave "the eye" We would have done it sooner, but it's so much easier to baptize a baby when you don't have to lug an oxygen tank on the stage with you, and photos are so much nicer without oxygen tubes!  After Evie had her heart surgery at 5 months old, we got busy with my going back to work, and then we put it off for awhile.  So the day finally came!  Evie was a shining star, and didn't cry at all! We were happy to celebrate this day of acknowledging that Evie is our gift from God, and that she is a child of God. Evie had quality time with both sets of grandparents this past year. We are grateful for all the...

Ok, IFSP does not stand for "I Find Some Problems." It stands for Individual Family Service Plan.  An IFSP is a summary of services for a child who has developmental delays before the age of 3. This is to assess her eligibility for services, but she is automatically eligible because she has Down Syndrome. Once she turns 3, she will get an Individual Education Plan (IEP), which is geared towards preparing Evie for school. There are an awful lot of acronyms in the world of special ed,  and I am still learning. Basically a team from the Early Intervention program comes to our house, and they have a checklist of developmental skills to assess. She gets a score in each category at the end, and then they tell us how Evie is doing compared to her peers.   Last time we did this, she was 3 months old, the questions cracked me up, because she was only 3 months old and couldn't do most of the things listed (but who can?). 3-month old Evie (and Violet) 14 month old Evie!...

After five days in the hospital for RSV, we are home!   I never knew what RSV was until we were in the NICU.  RSV stands for respiratory syncytial virus. Most kids get it by age 2 and get better in 1-2 weeks. But kids who are preemies or have respiratory issues are at higher risk of getting bronchiolitis or pneumonia. Evie got bronchiolitis. Hence the fast breathing that alarmed me and brought me to the ER.  Our other little friends with Down Syndrome had RSV, and I guess we joined the club.  I'm pretty skittish about being around people with colds now. I used to not care, but now if I get sick, there's a high chance Evie will get it, and it is so sad when she is sick. I also do NOT want to spend more nights sleeping in the hospital, as fun as it is to see our friends there!  So please don't be offended, friends, if you lean towards Evie and then I ask you if you'd like to use my handy Purell hanging from my purse. I'm protecting my young. :) He...

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...

Happy Valentine's Day, everybody! My heart is doing so well, that I have graduated from cardiology follow ups every 3 months to every 6 months!  Mommy and daddy are so ecstatic! This photo is one of the photos from my photo shoot with Nicole Starr. She is our hero because she donated her time and talents to so many families with Down Syndrome.  I would also like to wish everyone a happy Lunar New Year!   Today, I am remembering all my buddies with Down Syndrome who tend to have heart problems and need to stay in the hospital for surgery.  I am blessed with a stronger heart now, which makes it an extra special Valentine's Day! Lots of love,  Evie