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  1. M

    Reece has taken up residency at CHKD...

    Came in on the first day of school Tues.9/8/09. His PFTs were 30% & 32%....far from 60% which is his baseline. So he repeated them on Friday..they were 42%. much better then Tues. but not good enough to get the boot outta here. So he will try again on Monday. 50% is the magic number to bust...
  2. M

    IDEAS TO KEEP NEEDLE/PORT AREA DRY WHILE AT BEACH

    I was wondering if anyone has gone to the beach when their needle was in & what you did for prevention if any. Reece never emerges his whole body in the water anyways but I was concerned with splashes. He would def have a tank top on & would beaware that he couldnt get his port area wet. As...
  3. M

    IDEAS FOR BEACH WHILE NEEDLE IS IN

    I was wondering if anyone has gone to the beach when their needle was in & what you did for prevention if any. Reece never emerges his whole body in the water anyways but I was concerned with splashes. He would def have a tank top on & would beaware that he couldnt get his port area wet. As...
  4. M

    TUNE UP TIME FOR REECE

    He went in today for a clinic visit. Numbers were down. PFTs were 39% & 42%. Lost some weight. We went with our bags packed just in case....but they sent us home to wait. Will keep you posted.
  5. M

    skin allergy test

    We are thinking of getting Reece tested for allergies. I was wondering how invasive it is. I know its pricks on your back but what is the time frame & how do you think a 6 year old can handle it? Any info will be great<img src="i/expressions/face-icon-small-smile.gif" border="0"> Thanks!
  6. M

    POLLEN

    We have had some pretty bad days with the pollen. With Reece out in it for T ball..it has taken a toll on him. he is coughing more & his eyes are red underneath..around his eyelids. His activity is ok but I think he is getting worn out easier. I know he cant be getting sick AGAIN! He says he...
  7. M

    Transitions you have gone through

    I thought I could get some help from you. We are putting together a newsletter & my topic is the transitions CFers & their families go through. For ex. I needed help on what to do when Reece started school. What to send, how I would go about getting certain papers to his nurse/teacher about...
  8. M

    What transitions did you go through with CF

    I thought I could get some help from you. We are putting together a newsletter & my topic is the transitions CFers & their families go through. For ex. I needed help on what to do when Reece started school. What to send, how I would go about getting certain papers to his nurse/teacher about...
  9. M

    waiting, waiting, waiting......

    Reece & I have been in clinic since 11am!!!!! Still NO ROOM for him! We are the only ones up here besides 2 nurses. We have watched Fox & the Hound, Sponge Bob 3x & a Hot Wheels movie. He is soooooo bored though. He keeps saying "man we should have our room by now!" or "Im tired of waiting...
  10. M

    the boxing ring...similarities to CF

    Can anyone post this poem again. I looked for it through search & had no luck. I am looking for a poem to read at our walk this year. Any suggestions would be great <img src="i/expressions/face-icon-small-smile.gif" border="0"> Thanks!
  11. M

    Testing your blood sugars

    We have been testing Reeces' blood sugar. We were told to call the CF clinic if the number goes 200 or above. This morning one hour after his tube feeds ended I tested him...it was 192! Obvisouly they are high but what are the ranges he should be in? We were not told this. So I guess I need to...
  12. M

    missing school when sick/inpatient

    How much school does your child miss during a school year? What do you do when they are home but have IV meds? We usually keep Reece home until meds are done. I hate for him to miss so much school though. He does get his lessons while in the hosptial with the school program here. When he gets...
  13. M

    Reece is in :(

    Well he was on doxy on Jan.21 for 14 days. His pfts were 40% then....he did well during the 14 days, his check up was great he had gained his weight back...actually the most he has ever weighed....50.7 lbs.. & his pfts went up to 57%..then about a week after coming off the doxy his headcold...
  14. M

    how do I word the invite...ideas please

    We decided that we are gonna celebrate Reeces' one year anniversary this Feb. 22nd with a party! I usually send out invites that have a poem or a cute saying or in this case maybe a heart-felt saying. I just wanted some ideas...thanks!<img src="i/expressions/heart.gif" border="0">
  15. M

    CF SWEATSHIRTS & BRACELETS FOR SALE!

    Go to breathe4tomorrow.com & check out the sweatshirts & bracelets for sale! This is the foundation that helped us almost a year ago when we neeed to go to UNC for Reeces' surgery! Sarah is a WONDERFUL person who co started B4T! They also have a wall of Cfers...you can buy a brick & put a...
  16. M

    back in...its been 3 months

    We came in on Friday from clinic. Reeces PFTs were low...34%. He has been nursing a cold for awhile....he never could get rid of it. So we are getting 3 antis & will retake the PFTs again midnext week. He is fine with beng in cuz of the "roalty" he receives in here...lol. Hes been playing play...
  17. M

    im in chat

    sunday afternoon & reece & dad are watching tv...im bored.
  18. M

    Reece booked a room...

    Well Reece got a cold & didnt get any better so I took him him to clinic yesterday. (Mon) HIs Fev 1 was 33%...not good. His baseline is around 65% So it was an automatic admit. Im not complaining being is he has only been in 2x since his surgery. We are not on the regular unit, we are in the...
  19. M

    WHAT DO YOU LIKE ABOUT YOUR CLINIC?

    We have started a parent advisory board to improve our clinic. I'm on it out of 8 other parents/patients. We meet every month for now & are hoping to improve to be on the top 10 of the "best clinics". I believe Harford, Connecticut is #1. Our Cf team has been to different clinics all over the...
  20. M

    e flow users

    Okay so I admit we have a big rat in the house.....& his name is Reece <img src="i/expressions/face-icon-small-wink.gif" border="0"> He has this fasination about chewing his neb tubing & hes putting holes in it!! UGH! He has gone through 3 since yesterday....& Im all out of tubing. Tape dosent...
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