Monday, May 16, 2016

Week 143: Music City

I would like to start this post with a heartfelt thank you to everyone who contributed to our last-minute Great Strides campaign. We are so touched by how many of you donated, and how generous your donations were. We raised just under $6000 for life-saving research. Knowing that we have all of you behind us makes us even more optimistic that we will find therapies to treat the root cause of CF for Lemon and everyone else who is still waiting. 

This year's walk took place on a surprisingly chilly Sunday morning. As was the case last year, the walk began and ended at the Madison Mallards baseball stadium. We've been part of the Madison CF community for long enough now that I actually feel like I know a lot of the people at the walk, and it's a great opportunity to connect with some of the other CF moms and dads that I otherwise almost never get a chance to see. Since our kids can't be in the same room, it's very hard for us as parents to find time to get together!

In other news, for once the children's hospital managed to make something more convenient rather than less. On Wednesday they managed to consolidate our appointments with surgery and orthopedics into one back-to-back session. We did surgery first, and Lemon was completely unfazed by the g-tube change procedure. I actually did it myself, with the nurse watching. It wasn't difficult, but it was really weird to see the actual hole in his stomach. The nurse thought the site looked great, and we are officially discharged from surgery. I'll be changing out the tube myself every 3 months or so going forward, until that unspecified day in the future when Lemon decides to eat enough food to sustain himself. 

Orthopedics also went well. They took off the cast and took some more x rays. The break in the humerus is healing well. On this set of images they discovered that, hey, guess what, the ulna was fractured, too. But, that's also healing well. The ortho tech made half of Lemon's old cast into a splint that we can take off when he's bathing or sleeping, which is way easier than the cast. We go back one more time in a month and assuming everything's healed by then, we'll be discharged from ortho, too. Then we can go back to our regularly scheduled program of just focusing on pulmonary and GI!

I apologize for the lack of pictures this week, but I am once again blogging from my phone as I am actually in Nashville, TN at the moment on a business trip. Lime is here with me, and Lemon is home with Papa Bear, who is doing his first stint of solo parenting since about 18 months ago.  I'm sure it will be quite the adventure for all involved.  More on that, plus a double dose of photos, next week!

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