Things reallyhaven't changed. We are moving her to a more aggressive treatment. Shewill start methotrexate now in hopes of stopping the progression. Shehas hot, swollen feet and ankles almost daily, almost all of her toesare swollen, her hands and wrists are sore a lot... She has been verycranky. I think she is running the rheumatoid fevers and I know she isfatigued. She lost 2 lbs since her last visit, which was only 2 monthsago. That has us very worried. She only weighs 47 lbs.
She had her first soccer practice Monday. She had 110% heart and about60% of the ability she did last fall. It's very sad. Her big sister iscoaching her team this year too... She was so awesome last fall. Shelimps all the time now and never got to a full run. She never reallycomplained, but she did finally tell her sis that her ankles hurt abouthalf way through practice. It was making me hurt to watch her. She cameover and sat down with me. I took her cleats, shin guards and socksoff, and her ankles were so hot and swollen. I carried her to the carafter practice andchoked back tears all the wayhome.My sister grew up with this and I know what it's likenot to be able to do the things other kids do. SLG's doctors say lether do all that she wants to try, but man it was toughtowatch.
Her Daddy and I talked long into the night about it that night anddecided that we'd rather she be able to walk a few more years than tobe a soccer star. We just don't have the heart to tell her. But we sawher Rheumatologist today and he's sending her to a physical therapistto have a special ankle support brace made for her so that she can keeptrying to play. He said it was really important to let her trytodo it until she didn't want to anymore.As luckwould have it, or not, SLG is an incredibly talented soccer playeralready. She drew the attention of a lot of coaches last year whohavebeen playing club ball for years and thought we shouldhave her playing year round...
I carry her a lot. In the grocery store, to and from the car, stufflike that. I've also been sleeping with her a lot again. I'm concernedabout how the cooler weather willeffect her. The doctorrecommended a hot tub again for the winter. Myjob is goinggreat, so maybe that hot tub is a possibility for this winter yet.
Please keep her in your prayers. How silly of me, I don't even have toask. You all are the best. Just knowing you are here for us helps morethan you know.
Raspberry, SLG and Sebastian