It’s time for our once-every-ten-years end-of-the-decade sale and this year we’re donating a portion of the proceeds to Franciscan Children’s Hospital where our daughter, Ursula, has lived for the past couple of months.
Ursula, who was due on June 16th, was born on February 23rd, 2009, weighing 1 lb, 9 ounces. She stayed in the neonatal ICU at Baystate Medical Center in Springfield in an incubator for the first couple of months while we lived close by at the Ronald McDonald House. In May we expected “to bring Ursula, who [was at that point] currently well over 4 lbs, home in about two weeks.” That didn’t quite work out. After a PDA ligation, laser eye surgery, a g-tube procedure (eating required so much energy she would have had a hard time growing without one), and a tracheostomy to help out her lungs, which have been, and (will continue to be for the next year) the real issue, two months later, on July 21st, we did indeed get her home.
That was a great day—but not a great night. So the next morning we called an ambulance and she went back to Baystate Medical Center. There she went back on a ventilator and after a couple of days was diagnosed with pulmonary hypertension. After two weeks in the pediatric ICU, she was transferred to one of the meccas of modern medicine, Children’s Hospital Boston. After two weeks there—where we were able to sleep in Ursula’s futuristic ICU room (think Grey’s Anatomy—in space!)—Ursula was transferred to Franciscan Children’s Hospital in the Brighton area of Boston, ironically next door to the house we lived in 10 years ago. We found an apartment which is a 5-minute walk away, moved in at the end of August, and we’ve been here ever since. (All things continuing as they are, Ursula will come home in spring.)
Life has been hectic, and at times quite difficult, but everyone says being a parent is like that. Ursula is an absolute joy & a delight—and also the reason that we won’t be traveling for a while! Her lung condition, bronchopulmonary dysplasia, means that for the next few years we’ll need to keep her away from people during the flu season, and we’re investing big in Purell. The trach means she can’t speak, but she is fluent in kicking and smiling. She’s nine months old now, but only about five months old “corrected,” referring to her original due date, which is how you are supposed to think of a premature baby, in terms of weight, development, etc. She’s 13 and a half pounds, and by the time she is two or three years old, the damaged areas of her lungs will be small enough in proportion to the areas of healthy lung tissue that she shouldn’t need either supplementary oxygen or her trach. We’re learning a lot about babies, respiratory care, and how awesome nurses, doctors, and respiratory therapists are. At every hospital we’ve been to, we meet cool people because of Ursula.
Franciscan gets a lot of support (the Boston Bruins, big supporters of the place, are going holiday shopping for the kids on Tuesday!—and the Red Sox are coming by this week) but, hey, you know how it is in the health care zone: there’s always more needed. Ursula’s care is topnotch (and we strongly recommend and are eternally grateful to Health New England and Mass Health): from the 24-hour doctor, nurse (how do they stay so nice during the 12-hour—sometimes 16!—shifts dealing with all the poor, sick, cranky babies?!), and respiratory therapists to the speech (Ursula’s favorite person!), physical, and occupational therapists, to the cleaners who keep the unit sparkling, to the cheery people at the cafeteria (mmm!) and the front desk where we traipse by 3 or 4 times a day. And this is just one floor, the third, respiratory (with 24 beds), in one building of seven. They do everything for kids here: one of the playgrounds out in the back is set up for wheelchairs, it is awesome. It’s a huge place and every day hundreds of people come here to work and what they do is help kids.
So here are two things where maybe you can help—there’s a third which involves Holly Black, Kelly, and Cassandra Clare in Boston, but more on that at some later point.
First: radio. Second: sale.
Operators will be standing by LIVE at 866-931-MIKE on Friday, December 11th from 7AM to 7PM to take song requests and donations. While any and all donations are warmly welcomed, remember that the bigger the donation the better chance you have of hearing your song exactly when you want!! Donations can also be made here.
About the Benefit:
The Mike-FM Request for Help to benefit the Franciscan Hospital for Children is a day long, celebrity hosted radio-thon pay-for-play which helps to raise money and awareness for the Hospital. Over the course of the 12 hours, Mike-FM will play any song you want to hear… for a price.
Celebrities will be paired with parents and from 9 AM – 10 AM Kelly Tuthill (celebrity news anchor from NewsCenter 5) will be on with Kelly Link and Gavin Grant (parents of the delightful Ursula).
Please call 866-931-MIKE and request good songs!
2) Sale: we’ve been trying to work out an interesting sale and we think we’ve come up with a nice and easy one:
All our books are on sale—and $1 from every book (or ebook, zine, subscription, etc.) goes to Franciscan.
And, if you order items at full price, we will donate the difference between the full price and the sale price to Franciscan!
All our preorder titles are on sale, too! (They’re marked “Remainder” until we get it fixed.)
Paperbacks are less than $10—many quite a bit less!—and hardcovers are up to 40% off. Or, of course, more.
Go wild! Feel free to do all your holiday shopping here! And please do spread the word, thank you.