We’re hitting the road


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!  

9 Month Update

IMG_6316.JPG

September 15, 2016

Skylar is 9 months old!  This is a huge milestone for many reasons, the most important of them all?  She’s going to try eggs for the first time!  (We moms could not be more thrilled since she eyeballs our eggs every morning wondering why she can’t eat some too.)  Waiting 9 months to try eggs was a choice we made just in case she’s allergic to them.  And yes, we’re going to be those moms that pack them with us to the pediatrician for her 9 month check up next week.

What’s Skylar up to this month, you ask?  Let me fill you in!

  • Skylar is sitting up like a champ!  She’s so good at it that she hasn’t quite learned the art of falling over and catching herself, and she hasn’t learned how to get herself from laying down to sitting although she is very close.
  • She absolutely LOVES to dance.  Whether it be in her exersaucer or standing up with our support, this girl is getting her twerk down pat.  So You Think You Can Dance should be getting prepared now for her audition.  If there’s clapping, snapping, whistling, or Britney Spears on you can bet this girl will be getting her groove on.
  • Her babbling/vocabulary has expanded to include some new vocal ranges.  We love to egg her on and sing with her, some day we may regret this, but for now we find it quite hysterical.  I mean, she’s communicating with us, right?
  • Skylar still LOVES to be in public and around people – on her terms of course.  She’s got a little bit of the stranger danger and can be a little bit apprehensive when new people (or people she hasn’t seen in a while) come in to her personal space.
  • Someone also got her first tooth!  Skylar has some new facial expressions to go along with that tooth too.  We almost can’t stand the cuteness when she’s trying to figure out this whole tooth thing.  She even had her first visit to the dentist to meet Dr Spruill aka Dr Squirrel and his team.
  • Skylar went to her first movie..IN THE THEATRE!  Her twin cousins turned 12 this month and we decided to take Skylar with us to their birthday movie.  Not only did the twins take selfies with Skylar, but they also took turns checking in to make sure she was still enjoying herself during THEIR movie time.  Her cousins will be great models in how to be caring, courteous, empathetic and respectful to others.  Oh, and she did great in the theatre!  Not that we’re going to make this a theme, but at least we know she can hang if necessary.
  • She has a new doctor to add to the list of specialists this month.  She did not pass her hearing test with audiology last month and will be seeing the ENT docs next month for a full assessment and another hearing test.  In the meantime we’ve been diligent about keeping the wax down (just in case that was the issue) and learning and using sign language with her (in the event that she should loose her hearing).  Her attention span is amazing while she watches us learn to use our hands and expressions as language.
  • By now I’m sure you all know how much Skylar enjoys traveling.  She adores car rides literally at any point during the day or night.  Well, she seems to be digging airplane rides too!  This month we went to visit some of our BFFs in Atlanta for a long weekend.  Traveling with an infant is challenging, however Skylar does a pretty good job making it as easy on us as any infant can.  She’s so social and curious about her environment that it doesn’t take much to keep her entertained.  We did learn that she’s not a big fan of sunblock in her eyes, being hot, and horses – which is a bummer to this ex-equestrian.  I’m hoping that she’ll learn that horses are awesome in the future.
  • While she loves to eat and hasn’t been too picky about what she eats, she still isn’t fond of picking food up and putting it in her mouth.  She will hold her bottle now like a champ, but there’s definitely an eeeewwww when there’s a lot of food on her hands.  Give her a spoon and she’ll guide that right in to her face like she’s been doing it for ever.
  • Skylar had her follow up with Early Intervention this month as well.  Her therapist, Kim, is a no nonsense, right from the hip, honest and energetic person.  We like her quite a bit!  She, along with our coordinator, were very pleased with Skylar’s progress in terms of development.  (Proud mom moment for sure!)  We learned a lot about how to help Skylar succeed and progress over the next few months as she starts to hit tons of developmental milestones.  The biggest thing we’re working on his her strength and teaching her how to create motor patterns that will maintain her strength and teach her how to move correctly.  The moms have to learn how to overcome some of our own fears, exhibited by some of our enabling and over protection, in the process.  I (Anne-Marie) have to remember that Skylar doesn’t and cannot live in a bubble her whole life!  (For the record, Skylar having Down Syndrome has no affect on this parenting mishap of mine…)  Skylar will see Kim once a month until February when she is reevaluated based on the goals that we set for her.
  • This girl LOVES the camera.  Like REALLY.  We’re not sure how or what she understands about the camera, but she definitely puts on her most attentive face in the presence of any camera.  Maybe she’s destined to be on screen or behind the lens some day.

Our love for this little girl continues to grow beyond our wildest imagination.  I personally love learning all about this little person, how to be the best parent and advocate I can be to and for her, and growing more in love with her other mom every moment as I watch her parent our little frog.

 Editors note: WordPress is making me mad as I attempt to add photos for your viewing pleasure, this is all you’re going to get at the moment.