Just, wow.

We’ve been so busy!

Audrey’s right foot, which had such a rough post-op recovery has started to (finally) make some gains!  Her range of motion (ROM) has improved so much that we had to schedule a visit to see the orthotist to adjust her ankle-foot-orthotic (AFO).

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Which was no problem because the girls love to see Mr. Darrin at Hanger Orthotics.  Eva says he’s “sweet and kind.”

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Shortly after that Audrey rode a bike for the first time!

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She ABSOLUTELY loved it!

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Eva read a book for the first time!  She followed in her sister’s footsteps and read Green Eggs and Ham.  All those years of practicing turning book pages has paid off!  Eva can use her arms to turn the pages and can read the story all by herself.  This is a good place to be, my friends.

 

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On Memorial Day we drove out to Terra Studios and enjoyed watching glass blowing.

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The girls had a sweaty good time!

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Last week, we did something totally new.  We took an unprecedented week off of therapy and went to sewing camp.  We went to Lonesome Pine Quilts.  Guys, this place is fabulous.  The owner, Ms. Judy, is kind and patient and runs a tight ship.  The shop is super, super cute and full of great fabrics and notions.  There were five homeschooled girls in the class and Eva and another little sister were free to play together the whole time!

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Audrey took her lessons very seriously and did a great job.

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We rigged things up to suit Audrey’s needs and she had SO much fun!

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She really enjoyed the class, the company of sweet girls, and especially her projects.  This is the beach bag that she made.  The smile says it all.

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For your viewing pleasure, here are pictures of our dogs and their new haircuts.

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And this is a toilet seat.  I’m sharing this because I think it’s phenomenal for families with littles who need a potty seat AND also want their guests to have a nice, hygienic experience in the WC.  We bought it this weekend and it’s safe and handy for the girls, which is our priority…but it’s also so much nicer to simply lift the inner lid rather than lifting a definitely used potty seat and setting it somewhere while you go and then putting it back on.  Win win.

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Finally, just this morning, Eva’s very own Grillo came in!  The loaner has been a God-send, truly, but this one is a custom fit for our Little Miss and so fabulous!

New things can be scary, and some tears were shed.  But we are all so happy for Eva and her new walker!

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Audrey watches on, biting her lip.  She’s very empathetic towards her sister.

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After the tears there were joy laughs.

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And some Big Girl walking!

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Happy Birthday, Audrey Mae Cat!

Our Audrey Mae is 9!

As parents, our girls’ birthdays are always bittersweet.  We’re so glad to see them grow and for their development to continue to improve, but oh man, those birthdays kinda rub it in your face:  your babies are not babies anymore.

Audrey is 9 and reading.  And growing.  And getting stronger.  And she yearns for more and more independence.  When situations arise where Daniel and I intervene and make decisions for her or assist her in making a good choice, she will ask if when she grows up she will get to make that choice for herself.  Yes, sweet girl, and we pray that your choices bring you joy and bring you closer to Jesus.

Audrey is so kind, so smart, so lovely.  I think her biggest accomplishment this year is learning to read.  She is so proud of this new skill and, I think, cognizant of how much reading is going to change her life.

Audrey has a ready smile and the best laugh.  From the very beginning of us being a family of four, I have told the girls to cherish one another-that sister is one of the most beautiful words we have.  Even though we adopted out of birth order, the girls are reveling in sisterhood.  Just last week Audrey confided that she’s so thankful to have a sister who is funny.  This may have been that time when they were blowing methane bubbles in the bathtub and laughing hysterically 😉

Happy Birthday, Audrey Mae!  We love you so much!

 

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(that’s a quickly dwindling bowl of biscuits and gravy, Audrey’s favorite;)

b b b b b b b b b b b b b b b b Botox!

We all went up to Kansas and the girls had Botox injections, basically head to toe.

We love Botox.  The girls’ bodies, despite the fact that under anesthesia they’ve been injected all over, feel so relaxed and just GOOD after Botox.  I think they feel like they had a full body massage.  Can you imagine having tight spots all over your body and then waking up loose?  Thank you Jesus for Botox.

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This is Audrey, about 15 minutes after she woke up, post-op.  Happy. And it wasn’t just the special K she had when she was under; this girl was happy all day.

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And she wanted me to take note of how much her right wrist can straighten out.  At Aldi.

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Now we’re home and back to therapy and school and the land of hills and fog.  Until next time, Kansas.

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Arkansas Medicaid with Audrey & Eva

Having two special needs kids gives you a different perspective on healthcare.  I’m ashamed to admit that prior to having our girls (even though I worked in healthcare with special needs children) I was very unconcerned about medicaid reform.  It didn’t affect my family.  Now it does.

Nationwide, healthcare reform is underway along with medicaid cuts.  We’re beginning to feel an effect of those cuts already:  fear.  A fellow mother of a special needs child reported that their out of state hospital is no longer contracted with Arkansas Medicaid.  That hospital just happens to be our out of state hospital too.  So I got on the phone.  I called the hospital billing and patient advocacy departments and no one I had talked to had heard anything about this situation.  I called our specialist and they are waiting to receive confirmation from said hospital that Arkansas Medicaid will be billed like normal.  I called Medicaid and they said that their policy to cover out of state procedures not available in state has not changed, but that everything (payment related) is determined on a case-by-case basis.  When I heard back from all three parties, what I was told was that Medicaid will likely continue to cover these medically-necessary procedures but that there are no guarantees.

Nothing is definitive, but a lot of worry happened over what can technically be called a rumor.  A lot of special needs families in Arkansas are worried about how Medicaid cuts are going to affect them because the language in the bill is complicated for us lay people.  So it’s a waiting game, to see how this all plays out.

Here’s a copy of the bill that will affect how my girls receive care.

Based on my understanding of the bill, here’s how their therapy care will change:

Currently:  My daughters’ care is not managed so it doesn’t matter that Eva’s needs are greater than Audrey’s needs.  They receive therapies at the same location at the same time.  Praise the Lord.  I can’t imagine trying to juggle different therapy clinics and different therapy times every week.  Currently, we go to Children’s Therapy TEAM three times weekly for the girls’ therapies.

ProjectedMy daughters’ care will be managed.  Because Eva’s needs are greater than Audrey’s, they will be grouped into different treatment tiers.  Audrey and others in her tier (less needs) will have the opportunity to choose where they receive therapy services **if we want to bill Arkansas Medicaid.**  Eva and others in her tier (greater needs) will receive therapy services by a provider chosen by her care manager, if we want Arkansas Medicaid to continue to pay.  This is so frustrating to me.  We pay for both private insurance AND our Arkansas Medicaid (TEFRA), so why should we not be given a choice as to where we receive care?  And even if we didn’t pay for it, why should someone else choose where our children receive care?  Can you imagine a stranger choosing your child’s PCP?  Or a stranger choosing the group that will care for your child 9 hours every week?

This therapy provider will be chosen based on who presents the lowest bid to Medicaid.  The lowest bidders will be divided into therapy provider groups called PASSE groups.  If our therapy clinic isn’t in one of those groups, Eva will not be able to get therapy there.  We love our therapy clinic and are praying that they are grouped into our regional PASSE.  When I finished school, I interviewed all over Northwest Arkansas and chose Children’s Therapy TEAM because, in my opinion, their priority is quality care for their clients and their families.  It’s a fantastic clinic where my daughters receive unparalleled care.  In this model, we could be faced with the decision to try and take both girls to two different therapy clinics (logistically insane) OR pull Audrey out of TEAM and take both girls to our best low bidder option.

**Side note:  if you’re thinking, “hey, just go where you want and let your private insurance pay for therapy.”  You should know that medical insurance is not set up to pay for long-term therapies for developmentally delayed children.  It’s set up for short-term rehabilitative care, like care after an injury, lasting no more than three months.  What this means is that you HAVE to go to a therapy clinic where your medicaid will be billed unless you want to sell one of your kidneys and one of your spouse’s kidneys on the black market.**

Currently: Based on Medicaid-approved assessments (three or more for each discipline (OT, ST, PT)) and objective records, my daughters qualify for OT, PT, and ST.  Because I am an OT, the girls do most of their OT at home, but Audrey receives 60 minutes of OT weekly in the pool.  Eva receives 180 minutes of speech and language therapy weekly and 180 minutes of physical therapy weekly.  Audrey receives 120 minutes of physical therapy weekly.

Projected:  There will be a 90 minute therapy cap.  In the new model, for the girls to receive the amount of therapy they qualify for, their therapists must prepare documentation for pre-approval for the added minutes.  Then their PCP must sign and approve of the documentation.  Then Arkansas Medicaid (most likely a registered nurse) must review their cases and determine whether or not the girls qualify for the amount of therapy that professional therapists with advanced degrees  have determined to be medically necessary.  It has been reported that an estimated 95% of pre-approval applications will be denied.

And of course, there are the rumors that in the future,  Arkansas Medicaid  will no longer reimburse for out-of-state procedures.  We’ll see how that goes.  That would be a real bummer.

One representative in particular, has been clear that this new bill is our best option, because it’s this OR fully managed capped care What does all that even mean?  It’s complicated, but this is it, sort of:  “don’t petition for change/complain about this because if you can’t make it work, we’ll scrap it and your remaining option will be fully managed captitated care which you’ll like even less.”

What a relief that God is in control and I’m not.  What a relief that God is my provider and the state is not.

So, this is frustrating.  We’re praying about HB1706.  We’re praying for the politicians who are pushing this bill that makes us uncomfortable.  We’re praying for our family and other special needs families affected by this.

We’re trying to stay informed but not obsessing.  If you’re curious about the upcoming changes, Medicaid Saves Lives is an excellent source of information.

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