Friday, October 16, 2009

October 16

Yeah, I totally suck. Tell me about it. Let's see if I can summarize the past 2 months in under a cover story.

Came home 8/27. YAY! Yeah, I bawled. But thankfully, we have some wonderful nurses. Maryn still gets to see Auntie Emily, Auntie Mackenzie, Auntie JoAnn, Auntie Julie, Auntie Mandi, Auntie Heather, Auntie Amy, and Auntie Kristin! And Miss Tina is really wonderful as well. We are lucky that Interim found her for us. Ok, so it's the only good thing Interim (home health company) has done, but don't get me started. I'll save that for another novel.

Dr. Puccioni (neurosurg) decided the shunt ws needed. Blech. I was devastated. I seriously thought we had dodged THAT bullet. No such luck. She had it placed on 9/28. They wanted to send her home the next day, but David and I fought for an extra day. I know shunts may be minor to the surgeons, something they do every day. But NOT on my miracle baby girl. One more day to make sure everything is a-ok and we know what to look for.

Still spitting like a volcano. So guess that answers the question of "would pressure be causing the spitting?" I say she just wants to wear a different outfit. But she's shockingly good at missing her clothes but hitting everything, and everyone, around her.

Up to 11 pounds. Head is 42. Length is 21ish. Eating around 25oz a day.

Jaime had a CDC appointment on 9/30. Did I mention that the end of September sucked? More tests from genetics. Of course, IF we can get approval from our crap insurance company. Again, don't get me started. And neuro wants to test for some kinda neurochemical disorder. If it comes back positive, there might be possible treatments. But it involves a spinal tap. At least they will knock him out for it. No way they would survive it any other way.

And a feeding clinic for him today. Lots of suggestions that make me feel overwhelmed. So we'll see.

I'll try not to be such a slacker. Since you know I'm just sitting here drinking chablis instead of updating...