Excuse our hiatus on keeping up with the blog! I’m sure you missed us.
As you can imagine life is busy with a wee tot around. I don’t need to explain that!
Remember a long time ago we told you – our trusty blog readers – that Skylar has a cardiac defect? The most common amongst kiddos with Down Syndrome? A few months ago we were at her regular cardiology appointment and our cardiologist noticed some enlargement of her right atria – albeit small, still starting to enlarge from the stress of the blood shunting to it from her left atria. (This may require some googling if you have NO CLUE what I’m talking about – and maybe I’ll dive a little more deeply in to this when there’s a little more time.). He suggested it was time to start the conversation about repairing Skylar’s AV Canal defect. That’s when we about passed out, went stone cold blank, and maybe even shit our pants a little. I really believe we’ve been riding on this little river we call denial, refusing to believe that this day may actually come. But it has.
After much research and conversations with friends, family, coworkers and other folks that have gone through similar experiences with their children regarding cardiac surgeries, we have decided to get a second opinion at Boston Children’s Hospital. We’ll be traveling there next week for Skylar’s initial surgical consultation where she’ll be sedated for an echo, ekg and physical exam.
This little cliffs notes version of what’s a much larger thing will hopefully kick start our documenting of this entire process and experience. Not only do we want to have documentation of everything, but it’s also the easiest way for us to keep all of YOU up to date on what’s going on with our little Frog. We aren’t the first to go through this, and we certainly won’t be the last.
Time to pull up our big girl panties and get this show on the road!
Skylar gets to share a month-a-versary with this guy’s 7th birthday! Happy birthday Cousin Lliam!
On her 8 month birthday, Skylar enjoyed her breakfast bottle with both moms. She had coffee chats and read one of her favorite books Giraffes Can’t Dance before snacking on some zucchini, squash and avocado (one of her FAVORITE foods). We even managed to get a short walk in before her morning nap. Both moms were off to work after her morning nap leaving Skylar to spend the day with DeDe (Lisa’s mom).
What’s Skylar up to these days?
Skylar adores morning time. She wakes up on her own anywhere between 6:15 and 6:45 and plays in her crib until we go and get her at 7:00. She always smiles when she sees us and immediately starts chatting as if to tell us about her dreams or telling us what she’d like to do for the day. These are some of our (all three of us) favorite times.
She sleeps through the night, 12 hours. Loves her alone time in her crib at night and asks for it as soon as she’s ready by pushing her bottle away and reaching towards the crib. We are very lucky that she loves spending time alone and wonder if this will translate as she grows in to a girl that is independent and asks to go to bed rather than us struggling to get her to bed.
She LOVES to eat. He favorite foods are avocado, sweet potatoes, butternut squash and chicken mixed with apples. We haven’t found a food she absolutely refuses at this point and that even includes kale! We make all of her food at home guaranteeing her the freshest and most quality ingredients we can find…she eats better than us!
She likes to drink water ONLY from a big girl cup, not a sippy cup or a bottle which is a challenge for the moms to keep the water in the cup and not all over the house when she grabs it in an attempt to drink out of it.
She loves to roll over, be on her tummy at great lengths, and she’s working on sitting up independently. While she hasn’t mastered getting to sitting on her own quite yet, she is pulling her legs underneath, pushing up on her hands, and reaching for things that are just beyond her reach.
She feels like a super big girl in her bumbo seat, especially when her piano is in her lap. She’ll hold conferences with her court or concerts for her fans and even sit and learn how to cook while the moms are in the kitchen. One mom in particular likes to reenact the Food Network when she cooks providing much entertainment and laughter to Skylar.
She LOVES to play in the water! When I say loves, I mean LOVES. She loves to splash around, clank toys together, try to catch water as it drips off of toys or a hose or the faucet. Both moms are water babies along with Papa Walter, so we’re pretty pumped about this discovery!
She is quite chatty! She loves to babble “lalala, dah dah dah, blah blah, blah” and sing to the mom’s favorite songs (I still think dance and techno are her favorite, but I am pretty biased). Her first sign is “more” and we working on a slew of others including “thank you”, the colors, meals and “good morning”.
She LOVES her changing table. Loves to attack the sleeves of her clothes and play keep away with the moms while we try and to get her dressed. And she makes sure to grab both of her feet and pull her bum off the table when we change her diaper. She’s almost got her feet in to her mouth!
Car rides are one of her favorite things ever. Even though the moms sometimes like to use car rides as snooze cruises on days she doesn’t like to nap – Skylar manages to sing her little heart out and play with all of her car seat toys while on rides before .
She loves to be at coffee shops (really anywhere in public with the dull hum of people chatting and walking about). Sometimes she naps but mostly she wants everyone to come and chat with her so she can tell them all about her day.
She loves to read books, especially before bed time. Her favorite books are ones that she can grab and help to turn the pages, ones that have big bold colors, and ones that have the crinkly sound.