Here's a visual of what we do on a weekly basis. Rylynn went in today for a check-up to see if the meds and oxygen have helped her oxygen levels come up.
Last week we started a new medicine three times a day and we have started her on oxygen at night. I've always heard parents say that kids require so much junk to pack up for just an overnight stay, but you haven't seen anything until you have to add oxygen tanks and tubing to the suitcase!! She's doing fairly well with it although we're still in the adjustment phase. She still squirms at night and tugs at the tubing. I sleep next to her and attempt to adjust it throughout the night as she pulls and dislodges it.
So back to today's appointment... the doctor was happy that levels are holding steady so he put a call into Dallas to ask for a surgery date in approximately 6 weeks. This should fall around the beginning of September and Rylynn will be right at 4 months old. While Gilly and I know that this next surgery is inevitable and in a way we're happy to get it over with, we still aren't quite ready. I guess we'll have the next 6 weeks to prepare ourselves emotionally for the big day.I'm happy to report that Rylynn is continuing to give us more and more smiling faces and is facinated with her new friend Ramon the Penguin. She loves to talk to him! She also spends lots of time in her swing! (It's the only way that we can get anything done!)
As soon as the surgery date has been set, I will pass along details. In the mean time, keep Little Ry in your prayers!
With love. . .
