We have managed to get Mira to get at least 3 or 4 meals over the past few days, which is better than nothing. She is still only eating less than half of the time you offer her something. The nighttime screaming has subsided a little too - she only woke up screaming once in the past three days, which happened to be last night.
The biggest hurdle we have had of late is Mira's Kidcart debacle. Her Kidcart is basically a three part system - a chair (which is the actual seat she sits in) a high-low base (for getting her around the house) and a stroller base, for getting her around outside. There is an intricate cable system that broke on the chair that enables the seat to lock into the high-low base, as well as her stroller base. It is critical that have the chair working so that we can just get her around without having to carry her everywhere. The cable started to unravel and fall apart several weeks ago. We were proactive, calling the company that services her chair and placed the order for a new cable. As it turns out, the cable broke completely yesterday morning, with the chair locked into her high-low base. Good and bad. Good news is that it locked in the upright position. Bad news is that you can't get her around in the high-low base, other than in the house.
So we called the company to find out the status on the cable and as luck would have it, they hadn't even ordered it yet, citing it was pending insurance approval. Sarah explained our dilemma so they are going to expedite our order. By 'expediting' they mean you still won't get it until sometime next week. Even if we were somehow able to get a hold of a cable, we still need someone to install it. Basically we are stuck trying to get Mira around in a stroller (which offer no support) and lugging her locked chair/high-low base combo, which is clumsy and awkward to get in and out of the car, not to mention weighs 40 lbs.
1 comment:
Marc,
Ava went through a few months of the nightime screaming. It was just awful. She was totally inconsolable! We were also on a hefty dose of Keppra at the time. Nevertheless, I blame the abnormal brain activity. She still does wake up crying for no reason from time to time. I'm glad things are better w/ Mira. She's doing so great w/ her motor skills!!! I know I've said it before, but she really is such a beautiful girl!!
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