Hey guys! Sorry I've been gone for awhile, we've had a busy summer around here. After Dylan's radiothon, we met with his Nephrologist and she kept asking if we realized just how sick he really was. Yes I know how sick he really was, but she probably knows more! She took him off of more meds!! Off one more bp med, off of omeprazol, and off valcyte! She wanted to take him off plaquinil but I told her that his rhuemy wanted his dose of that to be changed. He now takes that daily and its 200mg. She, the nephrologist, also upped his dose of cellcept to a full dose, 1000mg 2x a day. His bp has been great!!! She also wants him to see a dermetologist for a base line look at his moles.
After this, he started driver's ed.!!! He has only done the written part and last week on Thursday, he got his permit!! Now we wait for them to schedule his behind the wheel!
His last set of labs were great, for him!!!! His creatinine is a 1.54, which is quite low for him. Also did a lipid panel this time and all is good there! Overall, Dylan is doing very well, Lupus related anyway. Well, I guess overall. Lol!! School starts in a few weeks, and we remember the long road that we have traveled on as Dylan will "celebrate" his 2 year anniversary of being diagnosed at the end of Aug. Wow! 2 years!
I know it was a long and very hard road ........... it is so hard for a mother to watch there child being so so sick, and not being able to do anything. I am glad there is not a light at the end of the tunnel. he has direction and control now ...... this is great news.