I Pray That Was It

So, as some of you know Jenna has been in pain for a few weeks now. If you are just now joining the party, WELCOME!, and you can go here and here to catch up on the latest :) Okay so last night was a "double Shot night" as seemingly all of us JRA families like to call it. Also, side note: Sunday seems to be just about every one's shot night. Okay, SO, last night Bean got her weekly MTX as well ass her bi-weekly Humira. I prayed and prayed and PRAYED some more. Please Lord, PLEASE let this be it. Please just let it be that she is in need of another dose. She was getting so progressively worse each day that I didn't think she would make it to school this week. By days end on Friday, Saturday and Sunday she couldn't walk. Daddy carried her, or she crawled, or she hopped on her one good foot. Despite the fact that it hurt her legs to do so. This morning she really struggled to get up and moving. She asked to please stay home and rest. It broke my heart but I told her to please go and try. If you can't make it then they can call me and I'll come get you. It was getting close to lunch time and we hadn't heard anything. So I suggested to Larry that we go surprise her with lunch. That way we'll know for certain. Well....as soon as she saw us, she bolted into a run, leaped up and wrapped herself around me monkey style!!! Feeling better Cupcake? She giggled and said YUP! WOW. What a difference. She seems back to normal now. Well....HER normal. Nothing is ever "normal" for her. But, for right now, she seems good! We go see Dr. Sagerman on the 25th. Very eager to get his take on all the goings on. AND to talk to him about CARRA and getting on the patient registry!! Is YOUR pediatric Rheum on it? Find out!!

Too Much To Hope For

So at Bean's last appointment with Dr. Sagerman in July he discussed possibly scaling back on meds when we came back in three months. That brings us to now. She sees him again October 25th. We had so much hope. We thought that we would never get here. I guess it was too much to hope for. She has been having pain for about three or four weeks now and it seems to be getting worse instead of better. She has been needing to stand at her desk at school because sitting for too long is painful. She prefers to stand up at home to color or play on the computer. I noticed this week that her left foot was turned in when she walks. Then a couple days later a limp was added to that. It has also been painful for her to have her backpack on her shoulders. It only holds a folder and a library book. Last night she was so tired and in so much pain that she had Daddy rub her magic lotion on her legs and feet and carry her up to bed. Something that he hasn't had to do in MONTHS. She also wouldn't set her left foot on the floor when she stood last night. She said it hurt her leg too much. We are back to 2-3 doses of Motrin a day. We haven't touched it in so long. This morning after a good nights sleep she seems better. But, her feet still hurt. And after coloring a picture for a bit, one of her most FAVORITE activities, she had to stop because it hurt her hands. Urgh. She has to be in a LOT of pain in order to speak up AND ask for medicine. I just wish I knew. I wish I knew what her little body feels. So at any rate, I'm guessing that this means no weaning for now. Very eager for the 25th to get here to see what he finds. See what he thinks.