Awareness and Ice Cream

August is SMA Awareness Month, but I'm all about awareness at any time - and not just of SMA, but of children who are different in general.We often walk with Lucy to Gilles, to get her some ice cream tastes.  This time, a mom and her two kids sat on the other side of the picnic table we were at. Her little girl was maybe a year older than Lucy, and leaned across the table and started to ask her mom loudly, "Why is that little girl laying - " Before she could finish, her mom poked her under the table to silence her.

I turned around and smiled, and said "This is Lucy. When she was born, she was born with really weak muscles, so she has to lay down." I could see the girl processing this, and then she asked, "Why?" I said "That's just the way she was born," because she was too young for me to really explain SMA (and we were getting ready to walk home :)).

It wasn't even about raising awareness of SMA, but rather letting that little girl know that there are kids out there who are born with different abilities. My responses to questions from kids are usually tailored to what I think they will best understand (and sometimes to the situation as well), but never will I be offended or bothered by an honest question from a kid. That's the best thing we can do for this society - teach kids early that not everyone is the same, and that's nothing to be ashamed or afraid of. Shushing your child when they have an innocent question about someone with disabilities, to me, sends the message that it's something we should not talk about - and that's the farthest thing from our goal. If you're ever in doubt, you can always politely ask the parents if they are willing to answer a question!

 

Lucy enjoying some ice cream - ignore the snowflake hair clip; that was all Daddy.

 

 

 

Clinic Day!

Since we are so blessed that we have Dr. Schroth only a little over an hour away, Lucy goes in for clinic days four times a year.  These days usually include updating her stats, blood draw, seeing Dr. Schroth, seeing the dietician, having the RT check her bipap... I think that pretty much sums it up.  Not only is that a fair amount of stuff to have done, it's not like they're all coming in one right after the other.  There are wait times in between - usually.  Not this time!

Lucy's AFOs have been giving her bruised heels, so she needed new ones ASAP.  We called the orthotics clinic - also in Madison - to see if we could sneak Lucy in on the same day as her clinic day for castings for new braces.  If you have to pack as much equipment as we do when you go somewhere, it pays to cram as many things into one trip as possible.  The receptionist said that James was supposed to be on vacation that day but was coming in to do some paperwork, so they could squeeze us in.  The only problem was that the time he was in was a scant two hours after our appointment with Dr. Schroth and crew STARTED.  No way have we ever been out of a clinic day that fast!  I was skeptical.

The receptionist suggested we get to our clinic day appointment an hour early, to get out earlier.  So, for us, an hour early means getting there on time.  Seriously.  We sped in and catapulted Lucy into her stroller, zipped up the elevator, and - since we've been hearing that the whooping cough and other awesome sicknesses have had record outbreaks in Wisconsin - we slapped a mask on Lucy to frighten away would-be infection machines.

 

We were so happy we got to see another SMA family as soon as we got to the front desk - the always handsome Garrison, sporting an awesome hat, and his awesome mom Angela.  No sooner had we made introductions, though, than we were called back.  It was so fast, I didn't even get a picture!  And if you know me, you know I am a picture FREAK.  Better luck next time.

Lucy was immediately on edge when we got back there.  She's no fool; she knows she's going to get poked and prodded, and she hates it.  She fussed when they took her blood pressure, and was just generally ornery through everything.  We got Lucy measured and weighed (up an inch and an astonishing 5lbs since our last visit!) and started a clinic day like no other.  Everyone was in and out, we skipped the blood draw since our favorite blood whisperer phlebotomist Noni wasn't there (which garnered a smile from Lucy, when we told her she wasn't getting poked), and bing bang boom, we were out!  We are going to have to set up appointments on the tail end of every clinic day from now on :)

We raced over to the orthotics center (well, as much as a Econoline van can race through insane road construction) and made it only a few minutes later than we had agreed on, which actually worked out great.

Lucy was casted for AFOs and a TLSO.  These braces help keep her ankles from getting too tight and contracted into the ballerina position (AFOs) and keep her back straight when she is upright in her stander (TLSO.)  She took it like a champ - probably mostly because she was engrossed in Sesame Street on her iPad :) 

Lucy in her body sock.

Almost done casting!

 Picked out a fun pattern for her boots, and we were out the door!  The receptionist even told us a back way to get out, so as to avoid the construction, and we also avoided going through Madison at rush hour.  Shaved a good half hour off of our drive time! 

I had prepared myself for a hugely long day, and was pleasantly surprised to get home when we normally do.  Another successful clinic day!  We got to hear multiple times how good Lucy looked, and tweaked the settings a bit on her bipap (and she's sleeping a bit better as a result), along with making some adjustments to her diet.  Still pinching myself to make sure that we are really so blessed to be so close to such a supportive SMA system!

August is SMA Awareness Month.  Please, feel free to take Lucy's story from our blog and share it with everyone you know.  The more people know about this condition - one that is carried by 1 in 40 people, and affects 1 in 6,000 babies - the more urgency will be felt to end it.