The Week In Dialogue

Her: Social Security office of Boise. May I help you?
Me: I'm calling to make sure that you'd received all the supplemental evidence I sent for my daughter's appeal.
Her: I have a letter from Dr. R, A letter from Dr. M, an audiology report...
Me: And a couple articles?
Her: Articles?
Me: Yea, scholarly journal articles about the long term outcomes of congenital-
Her: Education? We don't need education.
Me: Umm, yes you do.
Her: No, we don't. I've got two years of med school, Baby. (I'm not kidding)
Me: Well, when you look at her denial letter it does not appear that the person making the decision knew much about CMV.
Her: Oh. Sorry. What did she weigh when she was born?
Me: 4 pounds, 13 ounces
Her: Well, that's too big for her to qualify.
Me: (smoke coming out my ears)
Her: Does she have any functional disabilities?
Me: She's 11 weeks old.
Her: Does she have cerebral palsy?
Me: She's 11 weeks old!!

(I'll spare you the rest)

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At Walmart

Her: Oh, Bekah! Is that you're baby? She's so tiny!
Me: Yes.
Her: She's so tiiiinnneeee! How old is she?
Me: 11 weeks
Her: Wow. What did she weigh when she was born?
Me: 4, 13
Her: Was she a premie?
Me: Nope
Her: She's so tiny.

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Me: They keep deferring to me and asking me what services I want for her.
Pediatrician: You aren't in a position to be the most objective about it.
Me: They seem to think that she's completely normal right now, so they feel like there isn't anything for them to do until she's older.
Pediatrician: That isn't true. Her eyes aren't tracking bilaterally. She's not responding to social smiles and she is hypertonic. She needs OT and PT.

Thank you!

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Grama: I kept saying, 'Keira needs me, Keira needs me.' Now I realize that I need Keira and Bekah needs me.'

I love you, Grama Joy. Thank you for organizing my spice cabinet.

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Me: I start wondering why I have all this help. I feel like I should be doing this on my own, because I'm basically just a mom with three kids.
Jeff: Are you constantly second guessing yourself? Because it seems like you always think you're doing the wrong thing. Keira is not just a third kid. All the medical stuff is exhausting. Think about how much time you spend on the phone alone. Imagine if your mom wasn't there to keep Ronin from crawling on you....

Me: It's crazy all these things I've been learning because of Keira that I've been trying to do for so long. Like when to bag cooking dinner. I'm more able to recognize if I have too much on my plate and I change plans so that I don't get too overwhelmed.
Jeff: I'm proud of you. The way I see it, you've stopped trying to control things you know you can't control.

:)


P.S. Keira weighed in at 9 pounds, 10 ounces today! She's actually on the chart now for her height and weight. Her head circumference, unfortunately, is not on the chart. Keira is somewhat behind in her development so far, it seems, but she is growing at her own pace. She's a wonderful baby and is rewarding us more often with smiles and gazes. Her appetite, cuddliness, and positive hearing test results are all very encouraging signs. Her immune system has also proved to be robust enough to resist several bugs going around our house. Only one appointment next week: Infant/Toddler treatment planning which will hopefully include meeting the OT (occupational therapist).