Tuesday, July 9, 2013

Another Miracle for Mason

100_3102Our wheelchair vendor called Monday out of the blue.  They are mid-build on his wheelchair and it will be ready at the end of this month, which we already knew.  They were calling to let us know that while our main insurance company denied our request for a dynamic stander for Mason our secondary insurance has decided to cover it.  This is nothing short of a miracle!

To understand why it’s a big deal I need to explain a few things.  A wheelchair and a dynamic stander are both considered mobility devices by insurance.  You’ve likely seen video of Mason using the dynamic stander we’ve borrowed from Help Me Grow. We have to give that one back soon so another little boy can use it for a few months. 

In a dynamic stander Mason is held in a standing position and can wheel around where he wants to go.  Our main insurance company denied our request for a dynamic stander on the basis that Mason only needs one mobility device.  To them the wheelchair and the dynamic stander both have the same function. 

They’re wrong, which is not unusual for an insurance company.  Smile  While both allow Mason to move around the dynamic stander has other very important benefits: 

  1. It puts Mason at a height similar to his peers/agemates.  This is very important to help Mason interact with people in a developmentally age appropriate way.  Imagine being an adult who had to interact with the whole world from the floor, or from about the level of everyone’s knees.  While it can be done it certainly limits the interactions you can have.  Even in his pediatric wheelchair Mason will be pretty low because he’s just a 1 year old.  That first wheelchair will be short. 
  2. A dynamic stander gives Mason access to activites at a developmentally appropriate height.  For example when standing he is able to play with a toy kitchen, cooking pretend food and bringing it to mommy or a friend to share, then going back to cook again.  He can use a small child’s basketball hoop, throwing a ball, going to get it, coming back, and shooting hoops again. 100_3110He can reach high enough to plunk around on our piano or play with toys on a low table.  There are many things a toddler or preschooler does that Mason can’t do without a stander to hold him up. 
  3. Helps bowels – being upright improves the function of the intestines/colon.  Mason’s bowel function is severely compromised and being upright can help combat the never ending struggle to poop.
  4. The biggest advantage of all is that standing strengthens Mason’s leg bones.  Over time bones that are not used become thin and brittle.  It is not at all unrealistic that a simple bump could break such a weakened bone.  While we can put Mason in his HKAFO leg braces for standing to strengthen his bones he has to stay in one place and we have to be beside him at all times keeping him from falling over because he has no balance.  Ideally Mason will spend several hours a day standing to see the most benefit for his bones.  That is nearly impossible to accomplish with just the HKAFOs.  A child simply cannot enjoy standing in one place with Mommy holding on to them for several hours in a row(not to mention this mommy has seven other children to care for during that time…LOL).  The dynamic stander changes all that.  We put on Mason’s HKAFOs, strap him into the dynamic stander, and turn him loose.  He now is kept from falling over AND can explore the world, moving around at will for those hours.  It’s freedom and bone strengthening in one shot!

So why doesn’t an insurance company approve both a dynamic stander and a wheelchair when they do functionally different things?  It all comes down to money.  A wheelchair and a dynamic stander cost several thousand dollars EACH and so they ignore the separate benefits and only approve one.  This is common enough that when we approached our wheelchair vendor with the plan to get both they assured us they had never had an insurance company cover the purchase of both items for one child. 

We started looking for alternative funding options, including approaching BCMH (Bureau for Children with Medical Handicaps) with our reasons for wanting the dynamic stander.  BCMH is a secondary insurance Mason qualifies for because he is permanently physically disabled.  They typically will help cover the costs of medical supplies and sometimes equipment that insurance does not cover.  For example Mason uses 150 catheters a month.  If our main insurance had a limit of 75 catheters a month per patient then BCMH would help cover the cost of the other 75 catheters Mason needs. 

Our BCMH contact person talked to everyone she could to see if there was a way BCMH could help with the cost of the dynamic stander.  We got down on paper all the reasons we felt a dynamic stander would benefit Mason, the reasons it would help him develop and be healthier in ways that the wheelchair does not.  In the end our contact person was told that BCMH would consider our request if our primary insurance denied Mason a dynamic stander. 

Consider.  It’s such a small word.  I was afraid to get my hopes up.  We resolved to pay the several thousand dollars out of pocket to purchase a stander if BCMH denied the request too.  That amount of money is staggering for our family’s single income but that’s how important we feel the dynamic stander is for Mason.  We had loving family who were willing to help, which is a blessing I don’t take for granted.

100_3104Then BCMH said yes.  Truly, it’s a miracle.  Our wheelchair vendor was amazed.  They’ve never had this happen.  Ever.  They have a brand new medium dynamic stander waiting for Mason.  We’ll pick it up the same day we get his wheelchair, so long as it fits, or they’ll order him a small if it doesn’t. 

I can’t explain all the emotional ups and downs of this journey.  Parenting a child with special needs has been eye opening.  All we want is for our son to have the equipment to help him grow and develop to the best of his body’s ability.  It is hard to advocate for your child to a system that looks at the cost first before the child they are supposed to be helping.  I feel helpless at times fighting against impossible odds.  I know God worked this miracle for Mason to be able to have a dynamic stander.  I know this will be a wonderful tool for Mason to grow and develop that will also impact his health for good.

God is amazing!


  1. Yeah! An answer to prayers for sure.

  2. I am so thankful for your miracle. I'm thankful for your testimony, too. Hooray for your boy and the wonders of his wonder-full life!

  3. Yeah! It's so fitting that a miracle like Mason, gets a miracle like that.

  4. I read this yesterday and it made my day. Thank God for miracles!! And so awesome how you advocate for your child. I think if you daily and if I haven't said it enough to everyone...you inspire me. :D

  5. That's really great news.
    Getting around in such a busy household as yours is so important for Mason.

    However I would like to suggest a more "earthly explanation"
    They found your blog and knew you would praise them (along with the Lord)... pretty good PR ;-)
    Or if they wouldn't pay for it you would start fighting and document it on the internet... pretty bad PR.

    But seriously... Mason is very lucky and he certainly has an army of guardian-angels or something like this ;-)
    And of course he was sent into a wonderful family doing everything for him.

    I imagine having a child with SB and not believing in God, destiny or any higher power is very hard to accomplish.

    Sending your family all the best wishes from Germany
    Steffi and Amaya

  6. That is so wonderful! So happy for you guys!

  7. God is good! As a teen w/ a hearing aid w/ a sister who was on growth hormones for 8 years(Mosiac Turner's Syndrome) I understand the annoyingness of insurance companies. God Bless big brother Mason!


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