Heads Above Water

Phew, we're just managing to stay above water this week. Jordan is just barely managing to keep her head above the mucous. We thought she was on the mend from her recent cold, then bam! Last night she started coughing & spitting up. Luckily it's not really barf, but it's a constant wet hack, and I don't know who's worse off -- her for the cough or me for having to hear her suffer.

We managed to survive all of our doc appointments & therapies this week (and a few more hours on the phone with the insurance company trying to sort the same old things out). That leaves tomorrow for me to get the last of my Christmas shopping done.

On Monday we met with the neurometabolic clinic at OHSU (again). All of her tests from last time we were there (mid-October) came back negative, and they did have a chance to review her reports from UCLA & the genetic opthamologist. Nothing. They ordered more blood & urine tests, and referred us to their genetics group to follow up with some more testing on that side. I did get the neuro to say that Benadryl would be okay for her, so I've been giving her some of that 2 or 3 times a day for the last couple of days. She doesn't get hyper on it, but I don't know that it's helping reduce the mucous production any.

On Tuesday she had physical therapy and we spent about 45 minutes trying to get blood drawn in preparation for her feeding group appointment the next day. It wasn't a good day on Tuesday, I guess. The PT forgot the appointment and was already gone for the day, and the team of Carol & Carol came up dry in her veins. They managed to get enough blood for a CBC, but ended up doing a heel stick for the comp chemistry, and in the end they didn't have enough.

On Wednesday I took her back to the lab, and they poked her 3 more times. Her veins were dry. So, they took the sample from a finger stick, and that took a long time (and can sometimes show elevated potassium levels, so a veinus sample is always better). Poor thing, she's bruised all over her arms. Oh well, at least she's not getting blood drawn every day anymore (like this summer).

By 11:00 we were at feeding group, which was just the dietician today. Luckily she brought her calculator and her thinking cap, because Devon & I had a list of ~10 things to get through with her. In the end we reduced her amount of formula (she's following the 40th percentile for length [28.5 inches], and is off the chart for weight [24.5 lbs]), stopped her iron supplements (constipation issues that we're still addressing beyond the iron supplements), added protein, and kept calcium, phosphorus, zinc, and a mulit-vitamin with fluoride. That, combined with her medicines, makes getting everything into her almost a full time job.

We also decided that we'd start feeding her ~1/3 of her calories at night by hooking up the pump at a slow rate. That way it won't take so many hours during the day to get her fed (we'll go down from 6 feedings to 4 during the day, and each feeding takes ~1 hour, which is time consuming and hard to schedule around).

Last night, although we thought she was on the mend, she developed an evil cough, and has hardly slept in the last 24 hours. Evil cough! Julie, our other PT came to the house today and had to be very gentle with her to keep her from full-blown barfing. She & Devon missed the Santa party, but she seemed to be doing better by the time we got back, and is sleeping like a baby (hey!) right now. Fingers crossed that she'll make it through the night without swimming through mucous.

So, now that Jordan is squared away for the week, tomorrow I can concentrate on Avery's birthday (dinner, cupcakes, opening presents, and playing with Kate), returning my overdue library book, getting to the post office, buying the last of my Christmas gifts, and dropping off the last of my christmas cards. Nothing like leaving things until the last minute. I never would have been this far "behind" before kids, now I see it as being 3 days ahead! I'm not even in crisis, yet.

Now if I can just keep up with the laundry (as 2 baskets of clean clothes are stacked in the living room, and the washer & dryer are full). I feel like the great "rotater" -- as in "I'm just going to run downstairs and rotate the laundry" -- it's a never ending cycle! It hardly ever sees the drawers & closets, it seems.