Saturday, March 26, 2011

Glasses = Minor Mental Breakdown

Lucy had her Madison clinic day last week, and at the suggestion of Dr. Schroth, we took Lucy in today to see a pediatric ophthalmologist about her strabismus.  After a 3-hour appointment (and Lucy having her eyes dilated and then pried open while she cried - NOT fun), the doctor said that the inner workings of her eye looked like they were healthy and developing well, but she has rather severe astigmatism.  The kind that she probably won't grow out of.  The kind that needs corrective lenses.

While this may seem like an easily fixable, minor - dare I say paltry - diagnosis, especially in the face of SMA, it has upset me more than I realized.  I haven't been sleeping well lately.  Having a hard time falling asleep, really.  I can't seem to shut my mind off.  It's always racing with the next idea, what I have to do the next day, things I have coming up, and how I'll squeeze everything in.

As I lay in bed in the wee hours of the morning after finishing a project last minute, I find myself crying.  Crying because no matter what I do, no matter how much I do, I can't do what I really want to do.  What I wanted to do.  Have a healthy daughter.  No amount of sewing is going to fix Lucy up right now.  I think the glasses were the feather on top of this particular pile that toppled it for a few minutes.  Not only does Lucy have to live with SMA every day - something I inadvertently passed on to her - I couldn't even give her decent vision.  In the darkness at four o'clock in the morning, I feel like an utter failure.  

I know none of this is my fault.  It's nothing I could have predicted, it's nothing any of us deserve.  I think it's mostly the lack of sleep that makes this seem so much bigger than it is.  And, just like the treatments, the BiPAP, the surgery, the loss of movement... we'll become accustom to the glasses.  Lucy will become accustom to the glasses.  She may not like them at first, but they will better her life - just like all the other things she's gotten used to.  And her continued perseverance will just allow me to admire her all the more, which is something I can live with :')  Goodnight.

Friday, March 18, 2011

Clinic Day!

Looong day yesterday - clinic days always are.  As usual, this one was a complete success!  Lucy is growing right on track.  Her BiPAP settings are working great for her, and Dr. Schroth was very impressed by her chest wall.  Her medicines dosages were adjusted for her size (which is 34.25" and a little over 24lbs!), and we checked out some new BiPAP masks.  They measured Lucy for nasal prongs, but  - as Dr. S said - "she has some tiny nostrils!"  It's going to be a while before prongs are an option for us.

Something else we discussed was Lucy's eyes.  For the past 6-ish months, Lucy has had issues keeping them simultaneously focused.  At her last appointment I brought it up to Dr. S, but Lucy kept them focused the whole visit (of course), so she didn't really see what I was describing.  Lucy was tired this visit, so she saw it.  She thought it might be an area of concern, so back to Madison we go next week, for a 2 1/2 hour visit with peds ophthalmology.   

Dr. Schroth is incredible.  Amazing.  Exceptional.  And none of those words describe just how awesome she is!  She called when we were on the way down there to discuss some of Lucy's equipment, medicine, etc.  When we were there, while we were seeing the RT, dietician and getting blood work (boo, but Noni got it so fast!  Lucy was rewarded with a Beanie bear; Noni was rewarded with an angry glare), Dr. Schroth was helping us straighten things out on the Lucy equipment/medicine front.  I wouldn't think it possible, but every time we leave there I love her a little more!

I think I heard how wonderful of a job we were doing with Lucy at least a  handful of times.  Besides the glowing reports on Lucy's overall well-being, that may be my favorite part :)  There is so much that needs to be done for Lucy to thrive, and it's nice to have the reassurance that we are doing our jobs from one of the most respected SMA pulmos in the world.

Sorry it's been so long since my last post!  I haven't had the time to ponder life's deep issues, and even less time to blog about them.  Between keeping Lucy entertained and keeping Couture to Cure SMA stocked, there just isn't any free time left!  I will put it out there that the fabulous Marjorie Trew-Munson is kicking off springtime fundraising with a rummage sale in May.  She will begin accepting donations in April, so if you have any spring cleaning to do, contact me and I'll get you in touch with her.  There will also be a Scotch doubles bowling benefit for Lucy on May 14, complete with auction and raffle.  For more information please email Jim Zahn at 

I've started praying with Lucy every night.  She quite enjoys it!  We give our thanks, and ask for help.  Her favorite part is the flourishing "Amen" at the end :) 

"For everything comes from Him and exists by His power and is intended for His glory.  All glory to Him forever!  Amen."  - Romans 11:36