I just LOVE how the University of Rochester connects all of their providers with each other and the hospital. All of Sumana's specialists can see what tests she's had done, what tests are planned, and future appointments that are scheduled. This was a plus today when the sleep center was able to coordinate Sumana's follow-up visit with a possible bi-pap mask fitting. I guess the results usually take 2-3 weeks; however, they can see that Sumana is scheduled for VEPTR surgery in August, so they are rushing things so everything will be taken care of on Wednesday, the first. Yeee-haw!!!
I often have longed for days gone by . . . usually the 1800's. Our country's moral decline often overwhelms me and I wish for simpler, purer times. However, in the 1800's Sumana would not have even survived. And, life was sooo hard. I really do enjoy our modern conveniences, but I guess I just need to take things in moderation. Life can get so frenetic. I'm participating in a weekly Bible study on the book of Daniel. It's amazing how closely it parallels our culture. Daniel took the hard road more than once to uphold his values. It's challenging me to consider what compromises I make, instead of standing up for what I believe. Hmmmmm . . . .
Anyway, I finally got word that Sumana was approved for a cough-assist machine. I'm going to call on Monday to see if there is any way to get her instruction from her respiratory therapist on Wednesday, before her sleep study appointment. If we're driving to Rochester, I like to make our trip count!
As a 'camp' update: the Hole in the Wall Gang camp is full for this year (Paul Newman founded and arranged funding for this FREE camp. However, each disability has its own quota and spina bifida is one that fills up the quickest!) Anyway, I have been in contact with Family Life Ministries (FLM) and it looks like there is a volunteer that has experience working with special needs kids and is interested in helping Sumana. Hmmmmm . . . that's another call to return for Monday. Sumana is very excited because there are different tracts to choose from: science labs, music, puppets, crafts, drama, and sports. She's interested in everything except sports (surprise, surprise!). There is a local Rotary camp for disabled kids, but it is only a week before her surgery . . . too close for mom's comfort!!! Also, the FLM kids camp is only 3 days . . . a good introduction for a 10 year old! And, it doesn't hurt that mom will be working at the waterfront!