Friday, May 23, 2008

Still here

No, we haven't fallen off the face of the earth. We haven't moved, and Emily has been doing well. We just never seem to have a moment to spare. Sooner or later I'll get Diana to post on here too, then maybe she'll have a new hobby. :)

In the meantime - we're just pluggin along. Emily has been doing so well despite some serious gas issues while she is sleeping. I think her congestion from the Spring's wonderful pollen makes her gulp air into her tummy or something, b/c a few nights have been pretty bad. Anyway, she has survived and all is "normal" for us.

Diana is in NYC with the girls from my family, having a blast at the American Girl Doll store, seeing shows, and that tall metal French lady with the torch. They'll be back in a couple of days and I'll be anxious to hear the fun stories, which I am sure Annabelle will be talking about for weeks on end.

I was enrolled in 13 credits since I am trying to finish my degree asap, but one of the classes wasn't working out, lucky for me!, so now I am taking a slightly different route, but it will still entail studying for some tests. Hopefully this thing will be done by mid-Summer. I did manage to finish my Associates degree, though, so - YEAH!

We're working a lot with Emily on communication. She's two, so tells us what SHE wants, but that's not always what WE want for her. She's crazy. Reminds me so much of Annabelle, which is fun. Emily will act like she doesn't understand you one minute, then be completely assertive about what she wants the next -- it's pretty funny. So, we continue to encourage her to use her voice to communicate, but we are also pursuing eye-gaze selection (picking one object over another by looking at it) as well. We REALLY need to get some additional therapies and devices too, soon. Pool therapy, a power chair, etc. There are check-boxes that KKI wants us to "prove" Emily can do first, however, but I don't totally agree with their methods (and lag time), so maybe we need to look elsewhere for technical assistance. We'll see.

Other than that - along with the search to move we are considering making an academic move and getting somewhere where I can pursue a Master's degree. Philly is on the list b/c there is a Seminary that I could attend and a good hospital for Emily. Yes, I said Seminary. If it is at all possible, I'd like to pursue an MDiv, but somehow focus on Experiential/Wilderness/Adventure-based education. That focus, or variation of, does not exist at Seminaries, but you never know...! :)

Peace <><

Tuesday, May 06, 2008

Back Home

We're back home and Emily is doing well. She is being treated for
Sinusitis and we are starting a new regiment of breathing medicine,
Flovent. We've got her on some general antibiotics for 14 days and
she'll get more treatments with Xoponex, a bronchodilator. Her xrays
looked good and, despite having spiked a bad fever again last night,
she is doing much better. I think it was good to take her in to be
observed and given some medicine in a non-acute situation since we
felt we were teatering on the edge of a disastor. This was a good
visit and gave us a boost of confidence in Hopkins.

Anyway - thanks for your kind notes. We're trying to get some rest now
while Emily's nurse keeps her safe. :)

Peace <><

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Admitted to ER @ Hopkins

We brought Emily to the ER Monday night b/c she started having some
symptoms that have lead to bad situations in the past. We've had some
major Oxygen desaturations in the last few days (had to call 911 while
on the road last Thur) and tonight she was moaning on exhale,
feverish, very unhappy, yellow secretions, etc. Those are all things
that we deal with regularly, but this time our gut said to take her

She's sleeping now and it is 0126. We're starting her on some general
antibiotics b/c of the issues and we'll be here through the A.M., at
least, to see Pulmonary. Her chest xray actually looks quite good and
they know us here, so they are amenable to our wishes and conversation
about Emily's care while we are here.

I'll keep updating here. Feel free to follow my Twitter updates on the
side of the page, and we can be reached via the "Call Me" button in
the sidebar. No headset or mic needed. :)

Peace <><

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