very scared and worried mom

[anonymous]

THANKYOU TO EVERTYONE THAT POSTED, WE ARE IN THE HOSPITAL FOR SOME IV ANTIBIOTICS AND TRYING TO GET HIS WEIGHT UP. I'M SORRY IF I SOUNDED LIKE I WAS ANGRY OR NEGATIVE. I REALLY NEEDED TO VENT MY FRUSTRATIONS OUT BY POSTING MY WORRIES. I REALLY HAVE A NEW SENSE OF HOPE FOR MY SON AFTER READING EVERY POST/REPLY HERE . THANKYOU ONE AND ALL, IT'S SO NICE TO KNOW THAT THERE WILL BE PEOPLE TO TALK WITH ABOUT GOOD AND BAD THINGS. I AM JUST AT MY BREAKING POINT, I FELT AS IF WE JUST WEREN'T MAKING ANY HEADWAY WITH MY SON'S HEALTH. IT ALWAYS SEEMS WE TAKE 2 STEPS FORWARD AND 10 STEPS BACK, BUT I HAVE TAKEN ALL YOUR ADVICE, I GOT SOMEWHAT ASSERTIVE WITH MY SON'S DOCTORS AND HAD THEM GIVE ME THE REAL SCOOP ON HIS CONDITION, IT WAS GOOD AND BAD, BUT I AM NOT AS HOPELESS AS I WAS A FEW DAYS AGO. YES I HAVE THAT BOOK ALSO BY DR. ORENSTEIN IT IS VERY HELPFUL. WE ARE VERY FORTUNATE TO LIVE IN WESTERN PENNSYLVANIA AND GO TO THE CF CLINIC WHERE DR. ORENSTEIN WORKS, DR. O IS WHAT ALL THE KIDS CALL HIM.

STILL WORRIED AND SCARED MOM IN PA. BUT TO A MUCH LESSER DEGREE<img src="i/expressions/face-icon-small-happy.gif" border="0"><img src="i/expressions/heart.gif" border="0">

 

[anonymous]

YES, HE IS PRESENTLY IN THE HOSPITAL AND THEY ARE DOING EVERYTHING THEY CAN TO HELP HIM. LIKE SO MANY OTHERS I NEVER KNEW ABOUT CF UNTIL RECENTLY. I KNOW THAT WHEN MY CHILDREN STARTING GETTING SICK (MY DAUGHTER AT AGE 5, AND MY SON AT AGE 7) THEY WERE SWEAT TESTED AND IT CAME BACK NEGATIVE. THEN FOR THE REST OF THERE LIVES WE LIVED WITH FEEDING TUBES AND ENZYME MEDS BUT STILL THEY WERE NEVER TESTED AGAIN. AND WE WERE ALWAYS TOLD THEY HAVE A VIRUS, WE LOST OUR DAUGHTER, AND NOW WE ARE FINALLY TOLD THAT OUR SON HAS CF. AND WE ARE FIGHTING TO HELP HIM WITH HIS WEIGHT GAIN. HE HAS HAD PNEUMONIA TWICE AND ON ANTIBIOTICS LIKE CRAZY. I KNOW THAT IT IS SOME COMFORT TO US AND HIM THAT WE KNOW WHAT IT IS AND THERE IS HELP. WE ARE TAKING IT ONE DAY AT A TIME SOME ARE GOOD AND SOME ARE BAD. BUT WE WILL DO WHATEVER IT TAKES. MY HEART GOES OUT TO PARENTS EVERYWHERE WITH A CF CHILD.
LOVINGMOM