Meds and Equipment

Yesterday was our final day of Keppra - whoo hoo!  So we are officially down to two seizure medications!  We are still on the Valproic Acid three times a day and the Zonegran twice a day.  We have upped her morning Zonegran dose to 100 milligrams to compensate for taking her off the Keppra.  KNOCK ON WOOD Alex hasn't had a seizure since the beginning of August!  I have my own theory on why that is so I just pray we continue on this trend!  Last month we also started her back on the scopolamine patch for her drool.  One of the reasons I totally love my moms support group is the knowledge we all bring to the table that comes from first hand experience.  We were talking about drool one night at our group (all of our discussions tend to revolve around bodily functions - it's one of the perks of living this glamorous lifestyle!) Anyway - I mentioned that we had tried the scopolamine in the past but it wasn't good for Alex - her pupils dilated so much that you couldn't even tell what color eyes she had and she seemed to be dizzy - it really freaked me out so I stopped it immediately.  My friend Cat said her son had the same reaction - but it's because the patch is touched and the medication gets on your hands and if you then touch your eye, that's the reaction you'll get.  So we tried it again, this time covering the patch with a band aid so she can't get the medicine on her hands and we haven't had that problem again!  My mom's group rocks :)   Two recent pictures of her...and looks what's missing - her bandanna!

 

 

I wish I could say we don't need them at all anymore, but we do, it is getting better though! 

 

On to equipment.  Alex had such a big growth spurt that she needs all new equipment.  We've had evaluations and we are trying to get everything in place to replace all the pieces she needs.  Yesterday the stair lift that we have in the house to get her up to the second floor completely stopped working.  Luckily that is already in the works for a replacement.  Bathing Alex has always been a challenge because of her love for water and how excited she gets.  Her bath chair just isn't working for us anymore with her height so that's one piece.  We walked in for her evaluation and my first thought was "Holy bath chair Bath Man!"

 

Her Wombat chair, which is the primary chair we use in the house, needs to be upgraded too.

 

 

I randomly posted a picture of Alex on Facebook and Shannon cannot tell you for the life of her what the post was about because she was too busy studying the picture of Alex in the chair realizing it was way off and she needed a new chair. As if I needed another reason to love Shannon! 

 

We still need to look at her stander and her bike.

 

I've posted a few times about Alex's walker, which is called a Kid Walk and about how great she walks in it.  There is NO other walker that she walks as good in.  This is the only walker out of all the walkers we have tried over the years that she actually walks in and that is forward facing.  (Here's a clip of her from back in 2010 when we were first trialing it...Kid Walk)  The problem is that Alex has literally grown out of it.  They don't make another size up.  Her weight differential now has broken the bracket that holds her in and she also tips the walker forward.  I was so upset to learn that they didn't make a bigger size.  She finally has the motor mapping down and then she outgrows it.  That's just cruel!  Shannon contacted the rep for the walker who came out to do an evaluation on Alex -he ordered the last one for her so he has seen Alex in the walker.  He took videos of Alex walking in the walker and sent them back to the company that makes the walker telling them that this is the ONLY walker that has ever worked for her and was there any way we could make it work.  Well guess what?!?  The company is going to CUSTOM MAKE a walker that will accommodate her!!!  Whoo hooo!!!  Did I mention that it will cost $8,000 to make this custom walker?  I actually got a phone call from the insurance company, not a letter in the mail, a personal phone call, from a nurse at the insurance company, telling me they were denying it.  You know you must be pretty special when you actually get a phone call.  The equipment company said they also got a denial within 24 hours - and that's probably the fastest denial they have ever received.  I realize that $8,000 is a lot of money - heck, I don't think my first car cost that much, however, when you have literally tried every other option out there you just sometimes have to wonder who is making the denial decisions and if it's based solely on cost.  I have two ideas for a reality TV show and one of them is that when an insurance company denies someone a piece of equipment for their special needs child that the 'denier' must come and live at your home for 48 hours.  IF they can easily survive those 48 hours without the piece of equipment or surgery, or whatever else it is they are denying, fine the denial sticks, BUT if they can't, or if they realize what a HUGE impact it will have on someone's life, the denial gets over turned.  Don't you think that would make for good TV?

 

I guess I'll just be thankful that Alex is healthy and growing!