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Blogging through grief perhaps? by anewkindofperfect Posted in: Blog Posts in General Medicine I really think I need to start blogging again.  It was always SUCH a release, and although I am on Facebook all the time now, it's not the same.  Getting to just sit and typ ... Read on »
Almost a year .... by anewkindofperfect Posted in: Blog Posts in General Medicine How is it possible that we have lived almost a YEAR without our Princess?  I don't know if anyone even has my blog on their readers anymore, so maybe no one will see this.  ... Read on »
As it is by anewkindofperfect Posted in: Blog Posts in General Medicine This new stage of our lives is difficult.  Trying to continue on with life, attempting to smile when all we want to do is cry.  Figuring out the answer when people ask "How ... Read on »
Two months without our Princess ... by anewkindofperfect Posted in: Blog Posts in General Medicine It feels like forever.  It feels like just yesterday.  It feels like a nightmare.  It feels like hell.  We are having a HUGE garage sale tomorrow, to raise money for E ... Read on »
How it happened by anewkindofperfect Posted in: Blog Posts in General Medicine Many people have asked me about Emily's last week, days, hours, minutes ... and I haven't been able to tell almost anyone.  This weekend, a very close and dear friend of ... Read on »
Adjusting? by anewkindofperfect Posted in: Blog Posts in General Medicine How are you supposed to get used to this new way of life?  Being Emily's mommy is what I am.  It's what I have been for the last 8.5 years.  Yes I am Alex's wife, and Jacob' ... Read on »
Three weeks .... by anewkindofperfect Posted in: Blog Posts in General Medicine I can't believe it's been three weeks since our sweet princess passed away.  It feels like a million years since I last snuggled with her or touched her little face.  If thi ... Read on »
October 16, 2003 to April 16, 2012 by anewkindofperfect Posted in: Blog Posts in General Medicine This is the post I have never, ever wanted to write.  Thank you all for loving my Peanut. Read on »
Waiting, cuddling, crying, loving by anewkindofperfect Posted in: Blog Posts in General Medicine That is what we are doing right now.  Emily's fluids have been turned off and she is getting a lot of medications to keep her comfortable.  All we can do now is wait, cuddle ... Read on »
Weekend pictures by anewkindofperfect Posted in: Blog Posts in General Medicine (Me and my girl) We went to my Grandma's house yesterday.  We took lunch and an Easter basket, and had a good time.  Emily slept most of the time, like she does daily n ... Read on »
It's tough to type this update .... by anewkindofperfect Posted in: Blog Posts in General Medicine Emily is home from the hospital, and we are here to stay.  She has appointments with three of her doctors on Wednesday, and I have a phone call in to her hospice team.  We a ... Read on »
Day by day (and stupid blog problems) by anewkindofperfect Posted in: Blog Posts in General Medicine Things here change daily, and even sometimes ultiple times a day. Keeping Emily calm and comfortable is proving hard to do. She ended up having a reaction to morphine, whi ... Read on »
Rough days by anewkindofperfect Posted in: Blog Posts in General Medicine Emily has had two very rough days in a row. Emily has had a ton of coughing/gagging episodes that go on and on for hours. We have tried all her PRN meds and nothing helps. ... Read on »
Waiting for more surgery by anewkindofperfect Posted in: Blog Posts in General Medicine Emily is inpatient again. She had the UTI last week, and the antibiotic they had called in was not the right one. By the time the sensitivities came back, she had landed h ... Read on »
Bad blogger .... bad blogger! by anewkindofperfect Posted in: Blog Posts in General Medicine I just typed an entire long update and then my computer ate it. :( The short version is that Emily is home right now on IV antibiotics for a urinary infection. We should ... Read on »
Another week, another ER trip by anewkindofperfect Posted in: Blog Posts in General Medicine Emily earned herself a trip to the ER yesterday, after a long 4 days of trying to avoid it. On Friday, she had a bronchospasm that lasted three hours. It was horrible, but ... Read on »
Doing well at home! by anewkindofperfect Posted in: Blog Posts in General Medicine Emily had trach surgery on January 19th. She was discharged directly from the PICU on January 27th, the day before my birthday! What a great birthday present. She did gre ... Read on »
We made the decision ... by anewkindofperfect Posted in: Blog Posts in General Medicine Emily was discharged from the hospital last Thursday late at night, after a 16 day stay and antibiotic treatment for a line infection. She gets line infections because her ... Read on »
Christmas in the Big House by anewkindofperfect Posted in: Blog Posts in General Medicine No, I didn't get arrested before Christmas. ;) Emily was admitted to the hospital the Monday before Christmas. She had another blood infection caused by a bacteria translo ... Read on »