Monday, July 26, 2010
Today was Bean's 3 month appointment at Brenner Children's Hospital with her rheumatologist Dr. Sagerman. I have been really worried about this appointment. She's had some odd things going on like fevers, tummy aches, leg pain. They all seem to come and go so are any of them related to each other? Related to the disease? The meds? Also her MTX injections haven't been going so well. And those are the "easy" ones! A little bit of MTX leaks back out and she gets NASTY bruises at the injection site. We have been trying to tell Bean for a LONG while now that we need to do her injections higher up on her thigh. She insists on having them mere inches above her knee! No meat whatsoever there for the needle to go into. So the odds of hitting a vein, nerve or even bone are pretty high. The bruises are hematomas. He had me feel and sure enough there are two lumps underneath them. Daddy nicked a vein each time. Not his fault. We need to go higher up and to the side. I had Dr. Sagerman explain this to Bean since she doesn't listen to us. Tonight is a double shot night SO we will see :) All her joints look great and have excellent range of motion...except her knees. Those are pain free and move great, but, the are squishy. He spent a lot of time squishing the squishiness all around. He said he couldn't tell where the fluid was. I felt like SOMETHING was on his mind with regards to this but he wasn't spilling. Hmmm. He said for now we'll keep an eye on them. If anything changes or gets worse to call him. We go back in 3 months which puts us in October!! =O Where did the year go?! Anyway..so we go back in October...and...if all is well....we MAY try to scale back on the meds and see what happens!!! This made me super excited! Perhaps too excited. He had to reel me back in from my cloud. He stressed that she will still very likely need SOME meds for many years to come. I told him that's fine. Even scaling back would be a dream come true right now!! Then he mentioned the "L" word. We used to spell it but now she's too old and smart for that. She needed her 3 month routine labs. JOY. I gave her my usual pep talk. "I know you can do this sweetie. I KNOW YOU CAN. You have been through this so many times now. NO one likes labs. NO ONE. But you gotta do what ya gotta do ya know? You KNOW you need to get it done so just DO it. Oh..yeah...and if you do this plus let Daddy do your shots in the new spots tonight with no fighting then you get a big reward." Sooooo....whether it was the usual pep talk or the promise of a big reward I dunno...but she ROCKED it!!! WOOT! Best lab draw to date! No chasing her around the room, no getting 3 or 4 extra bodies to hold her still, nothing. A few tears and then, "Hey that doesn't hurt. Is that it??" Uh yeah Bean...that's it...YOU did it!!! SO super proud of my girl for that.
Wednesday, July 21, 2010
I still have to pinch myself. I just cannot believe how well our Bean is doing! For those of you that don't know, our move from Maine to NC has had it's MAJOR downfalls. MAJOR. Which keeps me second guessing our decision. Then we have another day like today. We had another follow up with Dr. Brown at Cabarrus Eye Center. Not only are her eyes STILL clear and flare free but she doesn't even need glasses!!! Amazing right?? She had a slight prescription to begin with and now it's even less. So no more, "Do you have your glasses?", "Where are your glasses?", "Don't forget your glasses.". Say it with me....WOOT! So we are now in month seven of clear, flare free eyes. Only seventeen more months to go before we can hope to wean off meds. Next Monday she sees her rheumatologist at Brenner Children's Hospital. I promise I will TRY to remember to update after that appointment! Busy, busy Summer!!