Wheelchair and insurance blues

We had a wheelchair evaluation yesterday.  We actually had the DME Supplier (Durable Medical Equipment) come out in July to adjust LJ’s kid kart and do the evaluation then, but he informed us at the appointment our insurance required us to go into the seating clinic.  I thought this was a little ridiculous considering the professional we’d be seeing in the clinic know nothing about my son.  He could be having a great day where he’s having excellent head and trunk control when they see him.  Which means he probably wouldn’t get the support he needs during his bad days.  But whatever makes sense to them, right?

As I listed some of the options I researched, I could tell we weren’t going to get anywhere.  We discussed the different options in chairs.  Wheelchairs vs strollers vs pediatric chairs.  I guess we came to the conclusion that the chair we have is the best option for another year or so.  Considering my animosity towards the kid kart, you can imagine my frustrations.

We talked about future options.  The most frustrating part was how insurance kept coming up.  It really ticks me off the we have to think about what insurance MIGHT cover instead of what is best for LJ.  That’s secondary.  And with insurance, nothing is guaranteed.  Even if you have a pre-approval, they can still refuse to pay a claim. 

I found out the other week that when LJ’s insurance was switched to having straight Medicaid instead of having a provider through Medicaid, that coverage DID change.  First off, no one bothered to tell me they were switching his coverage.  I found this out after we had trouble getting one of his prescriptions filled.  But no one would talk to me since they failed to put me on his case when they made the switch.  I finally was able to talk to a medical liaison who told me that nothing would change in our coverage.

She was oh-so wrong.

Now we only get 20 visits for therapy per incident.  And less coverage for DME.  Oh, and we don’t get a case manager, which is insane to me, since according to what I heard, anyone who is switched to straight Medicaid probably needs one more than anyone else.  For those of you who aren’t sure what a case manager would do, basically she would know who we are.  She would know our story and she would be my go-to person if I had any issues.  Instead, I have to wait 30 minutes to get a customer service agent (who have been less the helpful) and then I get to spend time telling LJ’s life story.  Over and over.  And over. 

I know these issues are minute.  But when I think of other parents who struggles are greater than mine and I get worked up again.  There are so many struggles we work through on a daily basis.  So many battles we have to fight.  And we will stand up to the plate, over and over again.  But I can’t help but think it shouldn’t be like this.  Not everything should be a fight.

And yet, I expect it now.  I expect everything to come with a battle.  Every doctor’s and therapist appointment.  Every IEP meeting or school review.  Every time there’s a new prescription or a change in medical care.  Every time someone suggest a piece of equipment that could be seen as a convenience. 

I’ll continue the fight, as I know other parents will.  We do what we need to, for our children.  I know these posts can seem whiny and can come off like we’re trying to play up sympathy.  But it’s a reality we live in.  And you know what they say about a squeaky wheel.

Anyone got some WD-40?


It’s been a busy couple of weeks!  Here are a few reasons I’ve been MIA and some updates! 

  • We finally have a nurse!  It took going through one nurse and three different interviews to find her, but I think it was worth the wait.  She’s organized, flexible, and very helpful.  She’s open to learning therapies to do with LJ and isn’t afraid to push him but also knows when he needs a break.  It’s been a huge stress off my shoulders, giving me more time to work.  Now if only there were more hours available…
  • My dad moved.  I took it harder than I thought I would.  I think it’s because I realized he wouldn’t be within a few minutes drive where I could escape.  And complain with understanding and without being judged.  I’m proud of him, though.  I know he’s just doing what he needs to do.  I miss him though.
  • Insurance change.  We’ve almost always had Medicaid for LJ but we had a provider through them.  Well, when LJ got his G-tube, someone decided to switch him to straight Medicaid, without anyone telling me.  No letters or anything.  I finally figured this out after spending hours on the phone trying to talk to anyone because whoever had switched him, failed to put any of his parents on the case.  So no one would talk to us!  Finally, someone fixed it.  But I was told nothing would change about my coverage.  Of course, a few weeks ago I find out this is completely false. 

             I called the Rehabilitation Institute to schedule a day with the therapists to teach our new nurse some good things to do with him.  That’s when I learned that LJ is limited to 20 visits per “incident”.  Meaning Botox, which is complete horse shit.  I’m sorry, but every time I think about this the words WTF scream in my mind.  My son will forever have this disability and it’s much easier to intervene and teach him things now then it will be when he gets older.  As he get’s older, he’ll only get bigger and heavier, and it will be hard to learn new things because he won’t be used to supporting that weight.  He only get’s Botox like twice a year.  Maybe three times at most.  I almost wish I had never done it so they couldn’t use that crap against us.

            So I call to address this issue, demanding a case manager.  We had one when we had a provider, although she was fairly new.  But guess what, they don’t provide a case manager.  So every time I call in to appeal a case or discuss anything, I have to go into LJ’s life story to some customer service agent that only knows the basics of his coverage.  I’ve been trying to look for one I can hire (hopefully to be covered by Medicaid) but I’m really unsure of how to go about this.  I’ve been pretty unsuccessful.

  • LJ has been doing so good in school.  He’s been more vocal and I know he’s always doing something there.  They built him his own play area under a table where toys dangle that he plays in when he gets to school, before they start the day.  He loves listening and even looking at the other kids!  You might not think this is a big deal but LJ use to freak out in unknown social situations where there were more than 5 people.  He also never really looked at others because he couldn’t make out faces.  I can tell his vision and even comprehension has grown.  I’ve had two therapists this week tell me they swore he’s said hi back to them.
  • Kansas City Power and Light (KCPL) is the worst company I have ever dealt with.  I won’t go into detail about the story because it really doesn’t matter.  They obviously don’t care how their customer service agents treat their CUSTOMERS like dirt.  It’s sad because I know plenty of people who could use their job and would do it better.  The first chance I have that I don’t HAVE to use KCPL, I’ll take it. 
  • I have a really exciting opportunity that I’m not going to talk about yet.  I don’t want to jinx anything, but once it’s done, I’ll be posting it here!
  • Noah is walking steady!  He’s also been saying “ba” “da” and “mum”.  He’s getting so big.  I love how he’s starting to engage with LJ.

Everyone’s been sick in our household.  I’ve held up till this past week.  Here’s hoping I don’t get it as bad as everyone else did!

Special Needs Link Love

I’m always looking for new links for special needs.  So in order to keep y’all informed, I thought I’d do a Special Need Links Roundup with a little description of the links I’ve found.  Some of these are old news, but I thought since some might not know about them, I’d better start from the beginning.

To The Max!  This was the first CP blog I stumbled upon.  I don’t remember how I got there, but I’m glad I did.  Max is such a lovable boy and his mama, Ellen, is an amazing woman/writer.  She talks about many subjects including equipment, confessions of a special needs mom, and some subjects that may be a bit controversial (like use of the R word).

Bird On The Street Katy is a former special ed teacher with an adorable son, Charlie.  She has some great units on teaching your child and activities to reinforce the lesson!  Charlie is about LJ’s age, also with Cerebral Palsy.  I discovered her blog through Love That Max!

Elijahland! is another one of my favorites!  Elijah is also about LJ’s age with Cerebral Palsy.  Another adorable boy with some great parents, Lisa and Andy.  Andy also has a blog about CP treatments.  Elijah’s CP is similar to LJ’s, a result of oxygen deprivation.  I love watching videos that Lisa post about Elijah and celebrating his accomplishments! 

Special Child Exchange is probably one of my least favorite names for a group because, well, it sounds like your exchanging your child!  But really, this is a wonderful Yahoo! Group.  It’s actually two groups, but this site will lead you to both.  The board is just for parents to ask for advice, exchange information, and provide support.  You will find a great group of moms here and sometimes even find someone in your area.  The Equipment exchange board is for parents to post equipment.  You can find a lot of good pieces for reduced prices, many items used.  Some parents even post discounted clothes and toys that they find that really helps other parents out, especially during the holidays.

Danielle’s Foundation This is a wonderful resource for parents of children with Cerebral Palsy and/or Brain Injuries.  After submitting my information, they called me very quickly to talk about LJ.  The same day, I was sent an email of a list of local resources.  They also sent me a book on therapies, which I’ve only had a chance to glance through, but it looks like an amazing resource.  They provide links and guides to fundraising and the volunteers there are so helpful.  They also just started a grant program where you can apply for things that insurance won’t cover!  Or even just those “convenience” items like, oh, I don’t know, a high chair.

If you have any links you’d like me to check out, please email me at OurYellowBrickRd@gmail.com 

Birthday Boy

Dear LJ,

Today is such a bittersweet day.  My boy is getting bigger!  He’s 35 inches long, almost 23 pounds, and has come a very long way since our days in the NICU.

Those days in NICU play all too well in my mind, still.  Especially on this day.  Last year, as I held you in my arms and whispered in your ear how proud I am of you, I couldn’t help the tears that fell.  I couldn’t help mourning what should have been.  I couldn’t help being a little resentful for you.  And for me.

You have taught me so much, though.  How to stand on my own two feet.  Patience.  Compassion.  How to be strong when everything feels like it’s falling apart.  You have filled me with a passion I’ve never known.  For kids, but especially for kids with special needs.  For their parents.  For you.

This year, you’ll start preschool.  Which brings a whole set of new fears.  But you have such a sweet and loving personality, that I know others are instantly drawn to you.  Some even love you.  I’m not sure what scares me more; that attraction or being excluded.  I think you’ll do great, though.  It’ll be an adjustment, but a good one.  And we’ll be there whenever you need.

I’m so very proud of you.  Of all the hardwork you do.  Of all your accomplishments, no matter how seemingly small.  I know it won’t always be easy, in fact, it will probably rarely be.  But this is our path to take together.  Our yellow brick road.  And I would happily take it with you.

Happy Birthday Son.

Love always,
Your mama xoxoxoxoxo

On the move

Changes are coming.

Posts are coming.

But first, I’ll be packin’ up and moving to WP (WordPress).

Everyones doing it.

And by everyone, of course I mean Ben.

With the move, will be the aforementioned changes.

I’ll be shutting down (or at least making it private) my other site. And filtering some of the posts I’ll be moving to WP. Pretty much re-working how I use my blog. I hope.

Anyhow, I’m going to go curl up in a ball somewhere, with my Tylenol 3 (leftover from postpartum-dom), cradling my face. Wisdom teeth are not fun. Especially when your 25 effing years old. And without dental.

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