AT 25 WEEKS PREGNANT I HAD A SONO DONE AT AN AREA HOSPITAL THAT WAS ROUTINE. THEY FOUND A PROBLEM WITH HER INTESTINE AND SENT ME TO JOHNS HOPKINS. THEY DECIDED TO DO AN AMNIO. THE RESULTS CAME BACK WITH ONE MUTATED GENE FOR CYSTIC FIBROSIS. THE DRS. TOLD ME WITH THE INTESTINAL PROBLEM AND THE GENE THAT THERE WOULD BE AN 85% CHANCE THAT SHE WOULD BE BORN WITH CF.JOHNS HOPKINS CONTINUED TO FOLLOW ME. THREE WEEKS BEFORE DUE DATE I WENT IN FOR A CHECK UP AND SHE WAS HAVING PROBLEMS. THEY DECIDED TO INDUCE LABOR THAT DAY. AFTER SHE WAS BORN THEY TOOK HER TO THE NICU. HER INTESTINE DID NOT FIX ITSELF SO THEY DID SURGERY AT 1 DAY OLD. SHE SPENT THE NEXT 4 WEEKS WITH AN OSTOMY BAG ATTACHED TO HER BELLY TO GIVE HER INTESTINE TIME TO GROW. FOR 3 OF THOSE WEEKS SHE HAD NOTHING TO EAT BY MOUTH. SHE HAD AN NG TUBE FOR FEEDING. SHE HAD A BLOOD TRANSFUSION. THEY FOUND OUT SHE ALSO HAD REFLUX. HER 2ND SURGERY SHE WAS 4 WEEKS AND THAT WAS FOR HER INTESTINE. SHE HAD BLOOD DRAWN SO MUCH THAT SHE HAD A CENTRAL LINE PLACED. HER VEINS ALSO COLLAPSED AND THEY HAD TO SHAVE HER HEAD TO PUT AN IV IN HER HEAD. SHE FINALLY CAME HOME BUT SHE WOULD WHEEZE SO BAD YOU COULD HERE HER IN ANOTHER ROOM. THEY CONTINUED TO ADMIT HER. NOTHING HELPED. FINALLY THEY DECIDED SHE WASN'T IN DISTRESS SO THEY STOPPED ADMITTIMG HER FOR THAT. BY THE TIME SHE WAS 1 YEAR OLD SHE SPENT 7 MONTHS IN THE HOSPITAL. CIERRA HAS HAD 2 BRONCOSCOPI'S FOR HER LUNGS. A YEAR AGO SHE WAS ON OXYGEN. SHE WOULD WHEEL HER TAKE OUTSIDE TO PLAY AND ANYWHERE SHE WENT THAT WENT WITH HER. SHE IS NEVER FULL, SMALL AND THIN. SHE CAN EAT 1 Ib OF LUNCH MEAT AT A TIME. TODAY SHE IS DOING WELL. AT HER LAST APPOINTMENT SHE HAD A VITAMIN DEFICIENCY. SHE TAKES ON AVERAGE 25 PILLS AND MEDS PER DAY. SHE IS FULLY AWARE OF HER ILLNESS. YOU SHOULD HEAR HER TRY TO SAY CYSTIC FIBROSIS.( IT'S CUTE) WE RAISE MONEY EVERY YEAR FOR CF AND THIS YEAR SHE HELPED ME RAISE 3,200.00. A FEW OF THOSE DAYS IT WAS HOT. ONE DAY SHE GOT SICK SIX TIMES BECAUSE OF THE HEAT. I WOULDN'T TRADE HER FOR THE WORLD
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Journal
Friday, February 13, 2004 10:50 PM CST
Cierra is now on medication for ADHD and is doing well. She just sarted at the beginning of this week. After 2 days we noticed a difference. The only bad thing is on the meds her appetite may decrease. This could be a problem in the future but we will keep an eye on it. Hopefully the meds will help in school.
At her IEP meeting the teacher stated she is not happy with her progress. Kennedy Kreiger has tested her in different departments and have all said she should be getting language svcs however the school has denied her. I'm in the process of finding an advocate. Her school wants to keep her in kindergarden or K-1 split which means she will go to k- 1/2 day and 1st grade 1/2 day, but at the end of next year she will still be in the 1st grade. The speech thearapist said that her brain may not be mature enough yet to learn what is needed for the 1st grade.
Cierra had psychological testing and said her IQ is in the normal range. According to the results she should be getting svcs for everything. The Dr. who tested her said there is nothing wrong with the maturity of her brain and that he did not suggest holding her back.
Things are going pretty well for us at this time. After genetic counseling I had a sono done that did not show any problems. We are having a boy. Cierra wanted to give the baby a piece of candy for Valentines Day. I told her she has to wait until next year.
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