Monday, May 31, 2010
Friday, May 28, 2010
Monday, May 24, 2010
Sunday, May 23, 2010
Thursday, May 20, 2010
Tuesday, May 18, 2010
Monday, May 17, 2010
Then there's days like today. Babies A&B both woke up at 4am, which means both parents wake up to feed them. I had been up about an hour prior to pump, so Lily was just getting a bottle. Lucky for us they both ate and were willing to go back to sleep. But at 8am the real madness begins. All 3 kids get up at once. Drew needs meds and a bottle, I need to nurse Lily, and someone needs to make Ella peanut butter toast (or whatever the breakfast item of choice is). There simply aren't enough hands. So we work together and get Ella in her seat with her breakfast and then I sit down to nurse Lily (who just happens to be very impatient). Martin prepares Drew's meds and gets them in him before giving him his bottle. At about quarter till 9, he is finally able to go back upstairs and get showered and ready for work. On a good day, hes out of the house by about 9 (today it was close to quarter after before he left). Then I am left with Ella, who just wants you to play with her for a little bit, Lily, who is dealing with some acid reflux issues and isn't to happy to be laying down for some period of time after she eats, and Drew, who is remarkably mellow, but needs his 30 minutes of CPT. Before we know it, its time for someone to eat again and the clock reads 11am.
Saturday, May 15, 2010
Thursday, May 13, 2010
Sunday, May 9, 2010
Saturday, May 8, 2010
Wednesday, May 5, 2010
Monday, May 3, 2010
Saturday, May 1, 2010
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Drew had a surgery which resulted in an ostomy. Basically, his bowel, rather than being inside of his body and disposing of waste in a diaper, sticks out of his belly and empties into a bag. GROSS-O, you're not the only one thinking it! Well, to complicate things even more, this bag leaks, daily, hourly sometimes, and every leak earns him a bath, and a half hour on the "ostomy changing station" that we set up in our bedroom. It takes two people about a half an hour to peel this bag, filled with poo, off of his tiny belly while he screams and cries, not usually because it hurts, but because we need to restrain him. The only thing worse than having baby poop all over your hands is having a baby with baby poop all over his hands. It really is miserable and most annoyingly time consuming. We're hoping that that will be reversed soon so that we just have diapers to deal with.
- clogs the lungs and leads to life-threatening lung infections; and
- obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food.
In the 1950s, few children with sixty-five roses lived to attend elementary school. Today, advances in research and medical treatments have further enhanced and extended life for children and adults with CF. Many people with the disease can now expect to live into their 30s, 40s and beyond.
Symptoms of Sixty Five Roses
People with CF can have a variety of symptoms, including:
- very salty-tasting skin;
- persistent coughing, at times with phlegm;
- frequent lung infections;
- wheezing or shortness of breath;
- poor growth/weight gain in spite of a good appetite; and
- frequent greasy, bulky stools or difficulty in bowel movements.
- About 1,000 new cases of sixty-five roses are diagnosed each year.
- More than 70% of patients are diagnosed by age two.
- More than 45% of the CF patient population is age 18 or older.
- The predicted median age of survival for a person with CF is more than 37 years.
In the CF drug development pipeline, there also are promising new therapies designed to rectify the cause of CF — a faulty gene and/or its faulty protein product.
If you are interested, you can view and read about some of the drugs currently in the pipeline by visiting http://www.cff.org/research/DrugDevelopmentPipeline/.
The purpose of my blog is to raise awareness and support for the CF Foundation. Very sadly, s