J's recovery was going well enough that last Sunday, we decided to try taking him out for our Great Strides walk. We decided that if he seemed at all uncomfortable or unhappy we would go home and knew everyone would understand.
I had been so disappointed that many members of our team had cancelled on me, but was excited to see a lot of surprise supporters when we arrived at the walk site. Jackson enjoyed the pinwheels his Grandpa brought and spent the whole time watching them spin in the wind with a goofy smile on his face.
It was time for pain meds when we reached the finish line, so we didn't stay for the after-party or to hear the grand totals for our walk. I found out tonight that the Ft Worth Chapter raised $305,000 this year! Our national team has raised close to $7,000 so far this year, and will keep working to bring more funding to the CFF for research and patient programs. When I talk about the programs, it's not just part of the fundraising spiel. It's personal. Jackson takes special vitamins that we couldn't get covered under Medicaid because they were considered a supplement rather than a prescribed drug. Because of these 'patient programs' I'm always talking about he was able to get them. THe same goes for his high calorie (and high dollar) formula. There are more programs to fund and more that I would like to see grow and be fruitful -(ahem, we should all have a vested interest in more adult care since we are working so hard to extend the lives of our CFers!) So yes, when I give my speech about why I spend so much time and energy fundraising, it's not just because I don't have a day job.
In other news, Jackson's first clinic appointment post-G Button surgery is on Friday. I don't expect to see any huge gains in this short two weeks, especially with all of the quirks of recovery, but I think we will see something. He looks different somehow already. His color is better overall, his cheeks flush pink again. It's impossible to tell if his moodiness before the surgery was just toddler changes or if he was feeling cranky because he was becoming malnourished- but he's his very bubbly, happy, silly self again. (with just a hint of familial opinionation).
The steri-strips came off of his incision site and as I looked at and touched the fresh scar beneath, I silently bargained with fate. "Make this worth it." And now I'm holding my breath for some confirmation that all of this increased energy and vitality isn't in my head.
And to answer the question at least half of everyone is just too polite to ask: No, I don't wish we had "just gone ahead and done it sooner." Even if were a downright miraculous solution to the ever-present weight struggle, I do NOT wish we had done it sooner. I know that I did everything I knew to do and then some and was out of options before I made a decision to permanently (& painfully) alter my child's body. I'm as ok with it as anyone could be.