Monday, March 23, 2009
Jenna had her follow up with Dr. Foster last Thursday. I was soooo looking forward to this appointment. At her previous appointment we had increased her MTX from .6 to .8 with the hopes that that alone would be enough to get her eyes clear. We left there with instructions to taper drops from 2x daily to 1x daily then every other day. Then stop completely 2 weeks before returning for this appointment. At first I was worried and nervous but I trust Dr. Foster. For those 2 wks I saw no squinting. No covering her eyes. No complaints of pain. Nothing....wow. It had been so long I didn't even realize that this had become "normal" for her. So I KNEW going into Dr. Fosters on Thursday that her eyes were clear. But still....to hear it...wow! WOW! The look on his face said it all! But to actually hear the words....yeah...pretty cool. BUT...we cannot get to comfortable. We have to be VERY vigilant. You see it WILL come back. That's okay though because we beat it this time and we will beat it again. For now we will just enjoy the "quiet". :o)
Saturday, March 14, 2009
Jenna had her 8 week follow up with her rheumatologist yesterday. As always (not that I am complaining) she had ZERO inflammation yesterday. *sigh* She ONLY seems to have it in between appointments. I am wondering if her even believes me. She has done this with every appointment. About week 5 she starts to swell. Then by week 7 it starts to go down. we go to the 8 week follow up....nothing. So he isn't seeing her when there is swelling present. Is this an issue really? I don't know. She also was sick a few weeks ago. NASTY stomach bug that has been floating around up here. Boy did THAT set her back. She didn't eat for nearly two weeks. She lost 5 pounds. Which on her tiny body is ALOT. She has put 2 pounds back on and has earned a new nickname....Tapeworm :o) So it seems as though she is finally on the mend from that. It also seems as though she is tolerating the increased MTX. Phew. I am sure that is what brought the swelling back down is the MTX finally kicking in. No complaints about her eyes either and we are at a full week with no drops!! No squinting no telling me they hurt or that she can't see (I will NEVER 4get that moment as long as I live). I cannot WAIT to see what Dr. Foster has to say next Thursday. I just KNOW her eyes are quiet. If there are cells I swear I will eat my shoe. Oh back to yesterday for a moment. It was routine lab day as well. We have gotten into a pattern where 8 wk follow up with Dr. Daihke is also routine blood draw time. She used to do SO well with it. Then that MORON in the ER ruined it. Ever since him it is awful. We have to pin her down while she screams like a banshee. I hate it. Although we did learn this time that it is the "noodle" that she doesn't like. Sheesh girl! WHY didn't you say so?? So Miss Mary (she is so awesome)told her, "if you hold still then I won't need it". Well she didn't exactly hold still but that is how good Mary is. She got the teeny butterfly needle in....had to push it up farther once....but all in all it went well. Just LOTS of screaming. I also left marks on her arm. *sniff* I didn't mean to. Miss Mary said I didn't need to hold so tight. She really wasn't moving that much. Oops. So next time we will try no "noodle" and see how she does. Okay...I think that's it :o) Til next time folks!