SB Clinic

Today we had Spina Bifida clinic which started at 9:45am & we were finally done about 1:00pm.

PT: Came in to check my concerns about Autumn's legs looking different lengths.  She said they are only centimeters off which can be normal so not to worry.  They checked Autumn's AFO's (leg braces) to see if they still fit well, which they do.  One of our foster dogs had chewed on one pair so they fixed it for us. :)

We then talked with the nurse practitioner about the following issues:

(Warning: Poop talk to skip ahead if you don't want details)
Bowel program: We discussed how to manage Autumn's bowels so she will only go to the bathroom once a day & eventually be able to wear underwear.  Right now she gets a medication (Senna) & an enema every other day or so to help her go.  Problem is this is not completely emptying her colon so she is going again in the morning as well.  In order for her to wear underwear we have to plan daily when she will go to the bathroom.  We have 2 options: First we are going to change from enemeez to the "magic bullet" which is a dispository tablet so see if this helps & we will increase her Senna dose.  If this does not work then we will start giving her a cone enema daily.  When doing a cone enema she will have to sit on the toilet for 15-60 minutes daily to clean out her colon.  Which brought up our next issue...

OT: Came in to talk about equipment for a toilet seat.  Autumn does not have the trunk control to sit on a toilet for a long period of time. So, we discussed options & decided to order her equipment that attaches to the toilet seat so she can have support.  It will have straps & hand bars to support her while I can administer the cone enema.  I was not sure if I should order the equipment yet or wait but I know this is our goal eventually so it would be best just to get it now.  This also brought us to my next concern...

Home modifications:  I have been stressed lately about our house & how the bathroom is not accessible for Autumn's needs.  We got her a bath seat but it's been nothing but frustration for us.  Our faucet is in the way for me to wash her without getting my shirt sleeve soaked & it can not attach a hand held shower type head to it.  It's a HUGE seat & it will not even fit in our shower & we have to bathe Autumn in our tub because the only other tub is upstairs.  Autumn also needs a modified bigger bed but her current room is so small it will not fit a bigger bed.  So, all I see in my head is dollar signs.  We also will need to get a wheelchair accessible van soon because the weight of transporting Autumn to & from the car is getting to be too hard on me.  So, after clinic we were sent to talk with someone about home modification options.  Depending on our income, we could possibly get help with modifications for Autumn a bathroom.  Problem is that Autumn needs her very own bathroom so house hunting or building may be in our near future as well.  We don't have the space to modify what we have in our current home. :( 

So, it was a lot to learn & think about at clinic today about Autumn's future needs.  In the morning she has her 4 year check up. :)