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Hope all of you on the East Coast stay safe during the hurricane. Our town is on the South Shore of MA but our house is inland, so we should be ok. So far, we have power. Doesn't look good for the little house we rent in the summer though :(

I've been sorting and organizing the IV supply closet and boy do we have a lot of stuff! If anyone can use any of the following, I'd be happy to ship them. Everything has been in MY storage area (boys have not had any contact with them). PM me! -82 30ml syringe -57 3 ml syringes -3 ststat...

I just saw this and wished we had had it when the boys were younger. It would be great for long waits in the clinic! Barefoot World Atlas http://www.touchpress.com/titles/barefootworldatlas/

Hi Everyone! August is so stressful for our family, getting us all ready for school (shopping, doctor appointments, finishing projects etc) but trying to cram in every last moment of vacation. This summer the boys have been feeling well, so we didn't have to include the usual summer clean- out...

I am having a discussion with Josh about his airway clearance etiquette. Currently we are on vacation in a lovely quiet cottage on the ocean.There isa family renting the cottage next to us. Josh feels it is quite appropriate for him to cough, gag, hack, spit and spew next to the open window...

A while back Josh had candida overgrowth and began drinking green smoothies as a part of his treatment. We had a recipe book, but I just found this AP that gives good info about the health benefit if each ingredient too. Just thought I'd share.

Josh has been coughing up blood off and on since yesterday morning. The largest quantity was 1/2 cup, but in total I would guess it's more than 2 cups.We called the hospital and are headed to the ER. Thankfully his regular doctor is on this weekend. She mentioned that Josh may require an...

<P>Well this is a new one to us!  Josh has had a blocked salivary gland under his tongue for several months.  The doctors said to eat sour candy and try to "milk' it out.  He tried without success and out of frustration slit the duct to remove the stone.  (totally eewww, I agree).</P> <P>A small...

<P>The EPA just issued an unhealthy air alert for our area of Massachusetts because of the high temps contributing to increased ozone. If we were at home, we would keep the boys inside with AC on, but we are renting a beach house without AC.  The temps here have been much lower and there is a...

<P>Josh has been off IVs for one week and he is already getting junky. <img src="i/expressions/face-icon-small-sad.gif" border="0"> He was on tobra and aztreonam for two weeks, then swtiched to tobra and imipenem for two more weeks.  His pfts went up 20 points and he felt great so they stopped...

<P>Some history...</P> <P>Josh had been on tobra and ceftaz for two weeks at home when he realized it wasn't working.  He got admitted, changed the ceftaz to imipenem and felt better after a week.  Last week his pfts had increased 20 points (his year high) and stayed stable yesterday. Everyone...

Over the past few years Josh has had bouts of anxiety and has only been treated with a daily depression/anxiety med. This week (end of the term/ finals exams) he's been having more frequent and sever anxiety attacks. Our NP just recommended klonapin or ativan. He's used ativan before PICC...

The Patient/Family Advisory Group of the Boston Childrens CF Clinic is hosting two very interesting presentations this month. Both will be webcast for those who cannot attend. First is <b>"Exercise in CF- Life is doing stuff" by David Orenstein MD</b> on Monday March 21st at 6:00 pm. The...

Thinking of our special friend who touched so many lives with her compassion and humor. She was there for me when I needing someone to listen. I am especially grateful for the network of wonderful people she wove into my life. The rose from Melissa's celebration of life hangs on my mirror...

Praying for the people of Japan this morning. Hoping Fred and his family are safe.

We just got back from our trip to Florida and Georgia with the boys. Everyone had a great and well-needed break BUT boy is that vest a pain in the neck to lug around! Our carry bag has a shoulder strap but no wheels. Does anyone have the Hill-Rom bag with wheels? Can you order it directly?

We leave for vacation next Thursday. Jesse passed the O2 altitude test in December, but his doctor changed her mind (grrr) and now would like him to have O2 for the flight. We don't have O2 at home and wondered if anyone has used the delta rental service OxygenToGo? <a target=_blank...

I am questioning whether this definition of "homeschool" includes being home tutored by an outside agency while the child recovers from illness? Thanks<img src="i/expressions/face-icon-small-smile.gif" border="0">

Josh is doing IV aztreonam and tobra at home. We are letting him do most of his doses by himself. He came home at 6:45 tonight and remembered his tobra dose was supposed to be at 5, so to hurry he took it out of the 'fridge and hooked up without warming it first. Of course we tried to tell...

We're going down to Atlanta after Christmas to visit my brother's family. I asked their doc for a letter explaining all our meds/supplied for security. She said she wants them to do an altitude test in the pft lab first to see if they're ok to fly first . It's the first time I've heard of...