Monday, March 30, 2015

Week 84: Ukes in springtime

Thankfully everyone stayed healthy this week, so I think we've made real progress towards getting Lemon back on track with his weight.  He's been sucking down 2 Scandishakes per day (~1000 calories total) on top of the rest of his food.  We have our next clinic visit tomorrow so we'll get an official assessment then, but I'm optimistic that even if he isn't back to his all-time high of 10.1kg, he'll at least be on his way.

The nebulizer continues to go well.  I ended up ordering a new mask and nebulizer cup online (I got the PARI baby setup for those who care).  I was a little disappointed with our clinic, I have to say--after a day or two with the system they gave us, I sent them a message saying that the mask was too big and didn't stand up to steam sterilization, and asked if they could please send us something smaller and made of silicone.  In response, they sent me a package in the mail with a new set-up exactly like what they'd given us before, plus one additional mask that, while smaller than the first one, is also not steam sterilizable.  Humph.  Thank heavens for the internet, that allows patients to easily learn more about what's out there in terms of options!  Now I just have to find out whether I can exchange the compressor that they gave me for the one that is actually supposed to go with the PARI setup (which they do give to patients, btw, just for a different medication), and we can put this whole little adventure behind us.

This weekend we had a wonderful visit from Uncle Joel and Aunt Donna, who came to see us as part of their epic road trip from Maine to Wisconsin via Florida, Louisiana, Texas, Arizona, and Colorado.  We had a great time, featuring lots of books, walks to see our favorite sights, and of course, ukelele music.  Lemon had an absolute blast.  They left this morning and Lemon has been asking about them all afternoon. 

It was a nice break to have a full week of only normal and fun events after several weeks in a row dominated by various medical things.  Hopefully we can sustain our current pattern through the spring!

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