Janine has had P-fapa since she was 2 years old! Less than 5% of the population gets this. Nobody knows what causes it or how you come to get it. Once we moved to Salem, Stephanie was able to find a pediatrician that would actually listen to her and tried to figure out what was going on with Janine. The Doctor officially diagnosed Janine with P-fapa saying that he's 90% sure that is what she has. We had just been monitoring Janine every time she would get the fevers and see if any new symptoms came or showed up, or if the fevers were getting worse. So we monitored her for 6 more months after we found Dr. Fullmer. Well we thought Janine was getting better and maybe even starting to grow out of this. Her last two episodes came two weeks in a row but only lasted 48 hours and her fever never spiked above 104. She even went 5 weeks without an episode! Usually these come like clockwork. Every 4 weeks. However, this last episode it all came back with a vengence. Janine did spike above 104 and that is when she starts puking and is like a rag doll. just limp. She was getting bloody noses. We were very concerned and Stephanie took Janine back to the doctor the next day where they drew blood from Janine to see if there was anything going on. Blood work was fine except for the two tests we knew would come back abnormal. 70% of kids with P-fapa who get their tonsils out are completely P-fapa free or reduces the reoccurance of these fevers drastically. 30% it does nothing. So Instead of giving Janine a steroid every time she gets the fevers we decided to get her tonsils out. We pray that this will work. If it doesn't work she could have it between 6-8 years from the time she got it! So Janine could be between 8 & 10 years old before she would grow out of this! So we pray taking out the tonsils will work!
Janine was a very brave girl. we bought her a lala loopsy doll whos name is Crumbs Sugar Cookie. we had enough time to even play with her a little bit before hand.
After the surgery she did great. she sucked on a popsicle for us and drank juice and had some jello. Then that night she even had mashed potatoes and fish! The doctor said after a week is when kids usually start having soft foods because of the pain. Not Janine. we could tell that she was in pain alot of times but 1. Janine hates the pain medicine, 2. She doesn't like a bunch of attention on her, so wouldn't ever ask for the medicine. Usually Stephanie and eric would have to start counting to 5 for her to take it otherwise dad would have to come hold her down....It never did come to that. Janine can just handle pain very well. The hardest part with Janine getting out her tonsils is trying to keep her down. She just wants to run and wrestle with her brothers and we are trying to have her watch tv and movies, or just color and draw. Janine did get Balloons and a stuffed animal from Grandma and Papa Powell and she was so excited to get those. She also got balloons and some stamps from the Primary Presidency. This is a very loved girl. Tomorrow it will have been a full week since she had her tonsils out and Janine is great.
An 18 Month Hiatus
2 years ago