Sunday, June 13, 2010

Crazy week behind us, another one ahead!

Last week was full of doctor, school and work appointments for our foster daughter Jade. Sumana tagged along for some of them, but mostly spent her time at home . . . with her 14 year old brother (GASP!) She wasn't too thrilled, but she also knew we were keenly aware of her attitude (remember the dishes and exercises??), so she managed to get through it.

Now, to report on the attitude adjustments we were working on. The idea of doing dishes and exercises EVERY single day seemed to put Sumana on high alert toward her mouth. She seemed to 'catch herself' frequently and either stopped what she was going to say or at least acknowledged that she was 'doing it again'!!!! I gave her a choice for lunch one day and instead of choosing one of the options I gave her, she offered another suggestion. As soon as it was out of her mouth she said, 'No, I'll have PBJ . . . I don't want to have to do dishes again!' I told her the way she asked didn't show attitude and she was OK . . . no dishes that night. However, she did do dishes 5 nights in a row! (Jade and Andrew (our other dishwashers), were pretty pleased about that!!!)

On to other topics: Miss Kristen (Sumana's PT), has a student working with her this summer from Upstate Medical. Miss Alyssa and Sumana seemed to get along right off the bat. Check out the picture of her and Sumana getting ready for her Wii balance challenges (Miss Kristen is hanging out on the exercise ball). Alyssa has chosen to do her case study on Sumana. She asked for lots of background info about Sumana and her past treatments.

That got me digging through a folder that I used to keep. I have so much paper from Shriner's Hospital, the Kirsch Center at Strong, several PT providers and a bunch of other stuff. Boy do I NOT miss those early days of not being certain about who to believe regarding the treatment for Sumana. We had extremely conservative options being presented locally and some pretty extreme options laid out by Shriners.

I am sooooo thankful for Dr. Sanders' arrival in Rochester. He is God's man for our family as far as pursuing the correct treatments for Sumana. Because of his concerns, we started seeing a pulmonologist (lung doctor). That led to getting a cough assist machine which has helped her immensely in sickness or in health. We also learned that an annual sleep study evaluation would give us early warning of any respiratory changes that might occur. Yes, it means more appointments, but it also means Sumana is much healthier and stronger. As I've mentioned in an earlier post, all of the doctors and clinics at Strong can access all of Sumana's patient info, MRIs, x-rays, etc. It really helps to get her the best care possible.

With all that said, her buddy Giana (not quite 2) is having surgery tomorrow and then Sumana will be in on Friday. Please pray that both girls will have clear lungs throughout the process and that the doctors will make the best choices for our girls' procedures. Sumana's VEPTR adjustment should take place around noon on Friday. Thanks for standing with us in prayer!

1 comment:

  1. Wow! I've been out of touch a bit with the travel! Great news all around! I can't believe the surgery has come so quickly - will definitely be in prayer!