The chronicle of a family thriving in the middle of a nightmare. You'll laugh a lot more than you expect. Promise.
Tuesday, October 21, 2008
Weight for it
Jaime is singing to Simon right now and he's doing the very sweet head bob and lean that he's started doing in the last couple of days. I think there's not much sweeter than when he lays his head down on my chest with purpose. Delightful.
Today has been sweet with Simon having easy happy waking times with both me and my Dad, a Roxie walk for me, a nap with Shimmy for my dad, and a gentle going to sleep with Jaime (spoke too soon...whoops) and soon a dinner out with Dianne, Ed, Bernie, Jaime and myself to celebrate the past weekend's festivities and our third wedding anniversary (Oct 22nd) from wedding one. Simon had his medications redosed based on his new weight (6.7 Kilos!!) so he seems to be doing even better than before and it looks like we'll start the Milrinone wean again either tomorrow or Thursday and have it last for about another week. Once he's off of it, we'll take a look at how he's doing symptomatically and tinker some with his doses again. He's still a little more symptomatic than he was before the last weaning but even less so than he was 24 hours ago. Why? Because his meds were based on a 6 kilo weight. My boy is 6.7 kilos!! Have I mentioned what a porker he is now? That's 14.74 pounds! He's not really a porker compared to some but he's hefty, he's got rolls, and a second chin now. I love it.
His BNP won't be back till Thursday but I'm not expecting too much since we've been stressing him some this week. He also had another Echo today but who knows when we'll get that report back. Really it's more about the day to day and that's going swimmingly.
Thank you all for the love, thoughts, and smiles (I hear that yesterday's video is a keeper)
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6 comments:
Hooray for so many good things! Mazel tov on the nuptials -- I'm sorry we couldn't make it, and I'm glad that Kim and Alexis got a chance to see you on your wedding morning. I took Amira to Arizmendi today, and spoke to the lovely Arizmendi lady with the "Team Shimmy" button. It was sweet to watch as she explained over and over again about Simon and why she's so happy to extend support. Such a HUGE team, including people you'll never meet.
I have had Monty Python in my head all day. I am so excited to hear how well he is doing. "I say we let him go"(home).
WOW...Sej is a friend of mine and I have been away for a year. When I returned and went to Trevor's birthday, I asked about her friends who had been neighbors & were delighted to take care of Trevor, as they were wanting to become mamas, she told me this AMAZING story. To your absolute credit, your blog is outrageous. In the middle of c**p and s**t in the news and on the Internet, it is a true and honest JOY to read your blog. You are a reminder of what it means to be Human. Thank-you.
also...for those of us arriving late, could you post a glossary of terms?...& I am an RN, but BNP was new to me...had to search for that one !
love Simon's new hairstyle.
See you all in 3+ weeks.
CELEBRATE!
Best wishes on your special day! We send our love and hopes for many more days of health and happiness to all!
Love,
Carol, Pat and Katie
(Z and Cecelia, too!)
It's all good news.
P.S. The wedding photos didn't come thru'
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