When You Get to the End of Your Rope

I have a new worry. I hate to share it, because I feel like I've already sucked up more than my fair portion of the blogosphere's empathy. You are all so supportive, and I care about you. I hate to hurt people I care about. Besides, saying it out loud makes it worse.

The hard truth is that Chickadee is not done regressing. She has experienced two major regressions, and I thought this last one was over. Observing her the past week I've realized she's not done.

Three weeks ago she was walking thirty feet with two hands held. Like an almost toddler. I now have to coax her to go three feet. She is also having a hard time sitting with her feet out in front of her, what her therapists call ring sitting. She can only sit that way for 5 minutes or so before she falls over. It was pretty indefinite a week ago.

This means she's less mobile. That, coupled with the facts that the gastroenterologist we saw yesterday told me has made today a hard day. Chickadee faces a poop bag, a permanent feeding tube, and a fundoplication if she gets much worse.

For now we can keep her off all of these things. This doctor is on the cutting edge of medicine where this is concerned. I'm so grateful. He was actually part of the team of researchers that tested out the drug she will be on, and there is really no other option. I'm happy there is still something left to do. But the reality is that they are looming in my future. I'm horrified that fiber, probiotics, and increased fluid intake will have no effect on an apraxic intestinal tract (lacking muscle tone). The result is just like the play dough spaghetti toy. It is important to keep up the fiber, fluids and probiotics, of course.

But it's like a band-aid for a broken arm.

So, what I'm hoping to focus on instead is what we CAN do now.

1. We tease
2. We negotiate
3. We eat joyfully
4. We Poop
5. We stand
6. We snuggle
7. We know colors
8. We like music
9. We kiss
10. We Love

I'm not in shock anymore, and I've blown denial to bits. If she can handle this, with a pouty lip and a few days of shrieking. Then I can get my exercise done and put on my makeup and clean up my house a little. What are you inspired to do?

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