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!

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2 thoughts on “Navigating this new world

  1. Great summary! You guys will be a wonderful resource for others following in your footsteps!

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