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!


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