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


Anonymous said...

So good to hear how well she is doing! She is a doll and her mama as well : ) You guys are doing an amazing job at giving Lucy an incredible life!

Victoria Strong said...

Yay! I love to hear how well Lucy is doing. She is so big now! And it is no surprise Dr. Schroth also gave YOU a glowing report! You are doing an amazing job at giving Lucy such a fun life filled with so much love!

On a side note, Gwendolyn did that with her eyes and then it went away and now it is back. We had it looked into, even did a seizure check, but came up with no answers. Will be watching to learn what you discover.

CureSMA4Stella said...

Yay, so glad you had a great visit too!!! :) Think of you guys often and YES, you are doing an AMAZING job. Hugs and prayers from Iowa!
Sarah and Stella