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Landsdowne Resort: alone for an afternoon and night. Second time away from Emily together in 3 yrs.

November 22, 2008

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Sent from my iPhone :: Peace <><

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Admitted to Sinai PICU - #SMA

We've admitted Emily to the Sinai PICU b/c she is on 2L of supplemental O2 and will not come off her BiPAP accept to cough, which is very frequent at this point. :/ Otherwise her hear rate and attitude is quite normal - except when her foot is being squeezed for blood (see picture). We'll see how things go. We're as "excited" as we can be to return to Sinai b/c they are great and that makes us comfortable. (I'll be updating via Twitter as well - Twitter.com/natedlee)

Day 1: Sinai PICU #SMA

So here we are - another Holiday season in the PICU. This will be the third year in a row, different hospital each year, that we've spent my B'day and New Year's night at the hospital. But, do you know what?! It's worth it as long as we have Emily with us! :) In fact, I think the only major holiday we haven't spent in the PICU with either Linnea or Emily is the 4th of July.

Anyway, poor Emily has a partially collapsed right lung with all the associated problems -- 4L of supplemental O2, increased BiPAP settings, lots of coughing, very very thick secretions, etc. We're doing treatments every 2 hours with the PICU staff and getting a bunch more cultures to see what's growing. Regardless, she is on Tamiflu and a new antibiotic. We're here, which is good. They cleared a bed for us b/c they were full, which we are incredibly grateful for. I am SO happy that we decided to not go back to Hopkins and found Sinai!!

Modified power chair Em's been practicing on.

We're getting Emily fitted for a Permobil power chair, so in the meantime she's been driving this make-shift chair at her elementary school. She LOVES it... and she is quite good. They are short on different types of driving switches, but she doesn't mind b/c she doesn't know otherwise.

Anyway, I don't recall the details right now, but you are looking at a TumbleForm secured on a power char with a couple of adaptive switches for going forward and turning Right. The reason she needs the TumbleForm is b/c the chair does not tilt or recline for proper seeting for Emily. It's a great rig for her to practice. So, we're praying that our insurance company will not makes our lives to difficult in the process of ordering the right chair for her. They are notorious for rejecting the notion that Spinal Muscular Atrophy (SMA), Type I kids even have the ability to drive. They typically do not feel it is in their best interest to potentially spend tens of thousand…

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