Raising Funds

We are really excited about a project we are working on.  We are making SMA shirts as a fund raiser towards purchasing a converted van for Benson.  They are still in the works.  Tshirt designing is a little more tedious than I thought it would be!  When we have narrowed our designs down, I'll post them so you can vote.  You'll be able to purchase these shirts through the PayPal donate button on the blog or by sending a check to a donation account we set up in Benson's name at Guaranty Bank here in Springfield.  I can hardly wait to get these going.  Check back for an update!

Benson's SMA Story

The Tubie Drama

Photo credit childrenshospital.org

Last night we had a little tubie drama.  It has been four months since surgery for Benson.  The surgeon that placed his tube told us to have it changed six weeks post op and x-rayed to make sure the placement was correct and everything had healed such that the stomach was sealed off and nothing was leaking out.  The surgeons here do it a little different and said to just call for an appointment when we were ready to change it.  So we hadn't been to have it checked since surgery.
Last night, we were all done doing the bedtime routine and ready for the kiddos to crash.  I was holding Benson and got up to get a binki for Brigham.  I don't know what his tube got caught on but I somehow pulled his button right out.  I'm sure it hurt.  It had 2ml of water in the balloon so it wasn't like it just slipped right out.  But 2ml isn't enough to keep it secure because it should have closer to 5ml of water.  It was obviously time for a change, but for our first time something less emergent would have been nice.
I grabbed our foley catheter thinking we would need to go to the ER to get an Xray and check for correct placement.  We were told that we would have 30 minutes if it was ever pulled out before it would start closing.  THIRTY MINUTES! We put the foley in quickly but immediately saw we were getting stomach acid coming back so we started to wonder if we could just do the button ourselves. 
I attended a class at Primary Childrens explaining how to change the button and proper care.  I watched and listened, but I never did anything.  I never even pushed water in the little balloon.  Lucky for me, I have Joe Cool for a husband and medical emergencies don't phase him.  I was actually proud of myself for doing the foley catheter.  Even though I was shaking and even though it slid in way easier than the button.  But Jon did the button.  We slid the foley out, lubed up the button, and slid it in.  Then filled the balloon.  No ER visit necessary.  We listened to his stomach while pushing water and heard lots of good stomach sounds.  But even still I was slightly nervous and woke several times to make sure his night feeding was indeed going into his stomach. 
This morning Benson woke up at 10am.  I think the night's adventure wore him out.  But he was happy and said his tubie felt fine.  Although, he definitely didn't want me to touch it. I think I apologized 100 times last night, I'm lucky he forgives so easily.

Bath Chair

I feel like having a child with intense medical needs forces you to understand the health care system.  Whether one cares to be involved in politics or not, with something that so directly impacts your life, it is hard to avoid.  And while health insurance impacts everyone, health insurance for a child who needs regular medical supplies is a whole different ball game.  I am learning a lot about the health insurance world.  Most of what I am learning makes me sad and discouraged.  One of those moments was when I called to get a billing code for a bath chair.  It seems like a medical necessity to me.  Helping your child sit up in the bath so they don't drown seems important.  And eventually, he'll want to shower and will need a shower chair at that point.  I was really surprised to learn that there is NO billing code for a bath/shower chair.  It's not a medical necessity.  And they're $350+.  Why is all medical equipment so expensive?  I stewed over this for a while (months).  And then one day I thought to call Families of Spinal Muscular Atrophy.  And what do you know?!  They had one in the equipment closet.  They shipped it out that day and we had it just a couple days later.  Benson loves it and felt a lot more secure chillin in the bath!  We are so thankful to this organization for all they do for SMA families!

That Perfect Moment

 

I just smile every time I watch these.  I love how proud he is!