9 Month Update

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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.

Navigating this new world

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We’ve managed to keep this little girl fed, happy and alive for almost 8 months!  Mommy win!

When Skylar was born, the neonatologist in the OR (who happened to be an old client of Lisa’s and a coworker of mine), told us that she had the features consistent with the diagnosis of Down’s Syndrome and she otherwise looked great.  First hurdle, whew!  He told us that she would spend a little time in the special care nursery for Cardiology to see her, but he imagined that she’d be able to come home with us in a few days.  That’s exactly what she did – and she’s been home with us ever since.

A few things come along with the diagnosis of Down’s Syndrome that a lot of families of typical babies don’t have to be concerned.  The biggest is the number of doctors visits that have to be continually scheduled.  Since we are first time parents, we don’t know anything different that having an appointment for something every month.  If Skylar didn’t have a congenital cardiac defect, we’d still have all of the specialty docs that we do, it’s part of the package deal and to be anticipated once discharged from the hospital.  Here’s our list of docs that we see on a somewhat regular basis, and will for quite some time to come:

  1. Pediatrician: We LOVE Dr Michelle Brenner and all that she has advocated and done for us thus far.  She’s fantastic and there is just not enough space for me to write down how awesome she is.  We are so glad to have stumbled upon her.
  2. Cardiology: We see her cardiologist fairly regularly to monitor her AV canal defect.  She’s considered stable at this point and her appointments are starting to be more spaced out since she’s doing so well.  She will still need surgery at some point, but for right now she’s just feeding a growing like a typical baby.
  3. Audiology: All babies have a newborn screening prior to discharge (at least here in the states).  Skylar passed her newborn screen and has passed her first screen out of the hospital.  She has another screen this month and will continue to have appointments to monitor her hearing.  There as an increased likely hood for her to have hearing difficulties or become deaf over time with the diagnosis of Down’s Syndrome.
  4. Genetics: We’re fortunate to have a pediatrician that helps us coordinate Skylar’s care and is up to date on treatments, tests, care, etc of her patients with Down’s Syndrome.  If she weren’t, this is where our genetics doctor would pick up the slack.  We’ve met with Skylar’s genetics doc both in the the office and on a personal level and know that should we need her she’d be a great resource for us.
  5. Neonatologist: Since Skylar spent almost 24hours in the special care nursery, and she has diagnosis (any diagnosis basically would fit this specialty) she was assigned to the neonatal follow up group for the first three years of her life.  At these appointments they check her development against herself and against typical babies.  They also help coordinate care if needed.
  6. Ophthalmology: Skylar hasn’t had her first appointment with optho yet.  Kid’s with Down’s Syndrome are something like over 80% likely to wear glasses, so it’s recommended that they start seeing eye docs around 6 months of age and consistently there after.  We missed her 6 month appointment because we were advised to not see the doctor we were originally set up to see.  Her first appointment in next month.

That’s a pretty short list of docs compared to some of our friends.

The other thing that we needed to tackle was Early Intervention and navigating the state healthcare system, Medicaid.  Oh.  My.  Sweet Mary, Joseph and all things beautiful in this world.  What a headache this has been.  Lisa has been handling most of this fiasco, but I am here to tell you this has been the most obnoxious and annoying pain in the ass.  As of yet we have not found a “how to” book on navigating the Medicaid system successfully and painlessly.  Our new community of parents with kiddos with Down’s Syndrome warned us about how awful this was going to be, and they were not lying one bit.  If they hadn’t helped us start the process and share their experience we may not have made it through and been approved FINALLY.

Here’s the deal.  Medical bills pile up QUICKLY when you have a child with a diagnosis.  Medicaid is there to help with those bills in addition to the health care coverage that Skylar already has through my employment.  There’s something else that Medicaid helps with – Early Intervention and Long Term Disability Care (EDCD Waiver).  To be sure that Skylar has the best possible set up for success in life she will have the opportunity to work with any therapist that she needs based on her development.  When I found this out I wondered why other kids don’t have this same opportunity offered to them – whether they need it or not.  Of course, we can go through all of this privately and pay out of pocket for all of the therapies and interventions, but thankfully the city we live in provides some of the best therapists in the area and we couldn’t afford it otherwise.

The other piece is the EDCD waiver which was originally designed for the elderly and disabled that were/are facing institutionalization.  This waiver allows us to choose who takes care of our child in our own home and helps us pay them.  For example, one of our attendants (that’s what they’re called), is going to be Lisa’s mom.  This is important as we can’t put Skylar in daycare and risk her getting ill with her cardiac defect.  We also need to make sure that whomever is taking care of her knows how to best help her as she develops since her muscle tone and control is lower than typical babies that her age.  We would not have even known this existed had it not been for our new community of friends that we’ve met through the local Down’s Syndrome groups.

This whole medicaid thing could be a post or 50 on its own.  So I’ll save the details for later, or even create a post of its own since it’s so important to consider this an option should you have a child with a diagnosis.

Update: Third times a charm.  We’ve been denied TWICE thus far, and have recently been approved for assistance!