Great NewsDecember 13, 2010 by Victoria Strong
Good news -- GREAT news! Gwendolyn's appointment today went really well. All things considered, Dr. Yuan is actually really pleased with how Gwendolyn looks and sounds. Her labs came back excellent. Her x-ray was fabulous. And overall she is in tip-top shape. WHEW! We talked to Dr. Yuan for hours and basically what it seems to boil down to is adjusting her calories a bit (adding in some protein, fat, and fluid) and changing her busy schedule a bit to allow for more rest. The latter is going to be the biggest challenge because, well, Gwendolyn is a three-year-old Miss Bossy Pants and thinks she no longer needs a nap. But this news is huge! Huge! Huge! Huge! We were feeling very heavy and worried that a very different conversation may take place. And the relief we are feeling right now is unmatched. And in unexpected news we were actually able to LOWER her settings slightly! THAT IS A FIRST!!! From listening to her and watching her breathing, Dr. Yuan played with the BiPap settings a bit and Gwendolyn seems to be doing really well with this slight change. We will watch her closely and can always go back up if needed. But this change was beyond music to our ears!
A) We love our sassy fighter girl and are going to work balancing her need for stimulation, experiences, and excitement with her need for rest. Hoping Miss I'm-So-Big-For-My-Britches cooperates All of this is a typical three-year-old issue (I know many moms of three-year-olds can attest to this), but for Gwendolyn giving up her nap is simply not an option. She needs rest to breathe, so now we just need to tell her three-year-old self to talk to her SMA self and work it out. This may mean cutting a day of preschool or perhaps leaving slightly early so she no longer takes mini naps in the car or changing some therapy times. And with an upcoming "Winter Break" from school and therapy we are hoping we can create Nap Boot Camp!
B) We LOVE Dr. Yuan. Her attitude, her support, her kindness are incredible. She listens. She thinks outside the box. She never jumps to conclusions. She always, always believes that "Gwendolyn is Gwendolyn" and each of us (regardless of SMA) is unique and, therefore, cannot be treated with one set of rules. And she wants the best for our little girl. We love her and Gwendolyn does, too.
C) Gwendolyn is so BRAVE -- our little Super Girl! She is so trusting. She is so willing to go along with things. And she is so forgiving. She twisted and turned like a champ for her x-ray. And she was our sweet ever-so-brave biscuit getting her blood drawn that took: two arm attempts, the special vein finder machine, 30 minutes of fishing with a needle, a very agitated Daddy, a very frustrated Dr. Yuan, and, yet, Gwendolyn toughed it out with only Mommy hand holding and promises of stickers and a new book. And Gwendolyn's tears quickly dried and her frowns turned to beams when Dr. Yuan gave her special sparkly princess stickers and a special Snow White book for being so brave during her blood work.
Thank you all so, so much for your thoughts, messages, support, and love. We could feel the goodness and it helped give us courage today -- and we needed it! We are always hopeful, but the reality of SMA is not always so kind. Super Girl is now snoring away peacefully and we are settling down to a good bottle of wine and toasting to a good day... a very, very good day!!!