It occurred to me yesterday when we went to the dentist office for the girls to get their teeth cleaned, that while we have adjusted and accepted some new “normals” here at home….have adjusted to the looks when we are out in public….for those that love us, some forewarning of these “new normals” is in order. Our poor dentist!!!
A few weeks back, Madison’s nausea returned with a vengeance. It was constantly there, would escalate for periods of time, then go back to the constant level. We have been here before…it’s miserable and we started seeing some of the spunk we’d finally gotten back into her start to slip away. None of us can stand by and watch her go back to where she was before, so with some help, a plan was devised, and Madi signed off on it.
For now at least, Madison is on partial gut rest. What that means is that she is eating mostly soft, easy to digest foods, with an occasional solid food thrown in (when it’s just too enticing to pass up), and otherwise she’s getting Boost (formula) and fluids through her g-tube to make up for what she’s missing. This means she’s connected to her feeding pump most of the time in order to get in what she needs. This means she has another piece of equipment she’s lugging around with her.
This, most importantly, means she is FEELING BETTER!!
I’ve suspected for some time, based on times when she wasn’t able to eat normal food for a few days, that digesting solid food took a ton of energy for her. There was no question that when her system wasn’t having to work so hard, her overall energy was better. But while we had discussed the possibility of trying it, particularly the last two years when she has been so low energy, SHE had to want to do it, and who really wants to give up eating??!!
The difference is, bitter sweetly, amazing.
I am still praying that tomorrow, or next week, or next month something will change. Somehow her system will get better and she’ll be able to eat “normally” again. In the meantime though, I am going to embrace this new normal like she has, and celebrate the fact that her spunk is returning.
A little more on the “spunk returning” I have referenced. It’s still day to day, and one good day can still sometimes mean a few days of being lower energy and tired, but overall, she’s tons better than where she was in early August. This baseline I cursed last summer because it was so much lower than where we had been the summer before, well, I am THRILLED to see this time. I marvel at how much better a period of time can look when things progress to a worse place. Our girl is still not where she was, but she’s living, and smiling, and participating, and laughing….we can live in this new normal.
So, if you see my girl sometime soon, I hope you can look past the feeding pump & tubing, the Oxygen tank and nasal canula, and the wheelchair (she may or may not be in), and just see that smile and that sparkle in her eyes. The attachments are less than ideal, and certainly make a statement we’ve not experienced making before, but for what it’s all giving her…..her life back…..we are happy to have them along for the ride.