Oh, for once I can say that it's wonderful to not be writing much! I write much more when things are going wrong. Lately, everyone is doing pretty well!
I truly feel that all of the work that we put into getting Emily on growth hormones has helped tremendously. She has been so much better. In fact, we are supposed to try stretching her Remicade and IViG infusions out from every four weeks to every five weeks! I am so excited about that!!! We have waited a couple of months to make sure she was doing as well as I thought she was, and I feel pretty confident now. I got her a gym membership. Now all I have to do is drag her there with me. LOL!
Zach is doing well. His asthma started flaring, but at least we have everything we need for that. He had one month where his joints were red and swollen, but they have evened back out. His rheumy (who is leaving us!) mentioned that we would likely be asked by the other members of the group to decrease his meds when the warmer weather comes. In sunny Florida, we also have very high humidity levels. They can be overwhelming for some things, but it's good for psoriasis, asthma, and Sjogren's! Hopefully around March we will drop his Methotrexate injections, and then consider dropping his Enbrel to once a week instead of twice a week.
My oldest and my hubby are doing well. :) I've been plodding along. I had quite a flare for about 2 months, but I think I am past it now. I've been hanging at the gym because it makes me feel better. I just finished one of my easier semesters at school, but next semester is going to be hell. I will likely not write at all through the next semester. Things are good, though. Eyes are good, lungs are good (except for the asthma), and the kids are happy. We just finished our homeschool year, so the kids are on a short break until the new year. Life is good!
Lastly, Emily turned 13!!! She had a nice birthday. We celebrated over 2 days; one day was quietly spent at home, and another day we went to an amusement park for the day. We all had a great time! So, now to change the blog name. Shall I change it to "My 13 Year Old is an Old Lady Who Turns Purple" or "My Teen is an Old Lady..."? Decisions, decisions. It may be hard in a google search if I change it to teen, but then I won't have to change it again for another seven years. Thoughts? Let me know! :) I hope y'all are doing well!
*My 13 yr old is an old lady that turns purple* My 13 yr old daughter has Mixed Connective Tissue Disease, (Lupus) which means multiple overlapping autoimmune diseases. She has Dermatomyositis, & Juvenile Arthritis. Yup, arthritis. She turns purple when her hands and feet get cold, which can happen from A/C. She was first diagnosed at age 6. My 11 yr old son has Psoriatic Arthritis. All of these are Autoimmune Arthritis. We share so you can learn!
Monday, December 15, 2014
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