No tube.

I'm sad.

This is an understatement, but I'm keeping it at that.

I'm really sad.

My best friend keeps telling me I'm "handling this well, better than most would". I text her after every appointment, after every weight check, when she spikes a fever and when she looks at me funny. So she knows just how NOT WELL I'm handling this. But she humors me and tells me I am.

I feel like I'm failing Rae.

Day 6 off the tube and she's falling over. It takes her 3-4 tries to get her balance to stand up. Her legs buckle underneath herself as her feet drag against the floor as she picks up her feet to walk. She sleeps 16-17 hours a day, she's exhausted.

I wanted her off the tube to see what would happen.

And this is what happens.

I'm frustrated with myself and everyone around me. We all desperately want to see her thrive and gain weight and be normal. I want everything she's suffering through to go away. 

But it isn't.
I don't want her to have a gtube.

I don't want her to have to have surgery.

I don't want her to be so backed up you can see it on an X-ray.

I don't want her to get weak from being malnourished.

I don't want her to be on such a huge dose of Miralax.

I don't want her on Elecare.

I don't want to keep a food journal.

I don't want to have to write down every fever, every cold, every ear infection and every snotty nose.

I don't want her to be sick.

In my mind I had prepared myself that she might lose weight when we took her off the tube, but it didn't occur to me that she'd regress.

It scares me (another understatement).

I can remember telling the geneticist about it happening back in January/February when they were thinking this was CP by the way she was regressing and bending her legs. I remember how concerned they were about it, but she was on the tube, and within a month of being on the tube she was great. And our problems with muscle weakness were as good as over! She was walking, her balance was great, she could pull herself up and spin and dance and jump. And in just a few short days that changed.

I watched her desperately attempt to pull herself up onto the couch yesterday, to no avail. I took videos of her struggle to stand herself up, watching her cautious face as she attempted to stand up without falling over.

This is my fault.

We chose option one.

We chose to take her off the tube, to see what would happen.

Selfishly.

And this is what happens.
I noticed it, but even more important, my ped asked Monday and one of the home nurses asked yesterday about her walk without me even mentioning it.
It's not normal.
She's going back to the bad muscle weakness again.

To be quite honest, I'm not handling this well.

I'm losing my freaking mind!

I'm obsessing about whatever this is. I don't know how after 8+ months of testing they still don't know what's wrong. And they still haven't been able to fix it. And she's obviously not out growing it. 

If I'm not talking about what's going on with her, I'm thinking about it and hoping someone will ask. But usually people don't. Probably because there's nothing to talk about, there's no new information to tell, which makes it even more frustrating for me.

She's just stuck, waiting for a diagnosis for WHATEVER this is so that we can start helping her.

I don't sleep. I sleep maybe 4 hours a night. The rest of the night I just think and listen to the lullaby of the kids sound machines.

I can't even wrap my head around the fact that this nurse, who knows NOTHING about Rae, can stop by, look at her walk, her weight and I tell her about her frequent illnesses, how much she eats, how she's had chronic constipation her whole life and she can say "Have they checked out muscle based diseases? Like, have they thought about Mitochondrial Disease?" In 10 minutes of knowing her, yet it's taken us 8+ months to get to this point and we are waiting to even be seen by the right doctor she needs.

Sigh.

And that's the end of my never ending blog rant.

Someone please bring me cheesecake and let me cry on their shoulder.

Or just the cheesecake.


M