Well, probably 2 weeks is more accurate. Has it been that long? I guess so!
I shall start with getting Emily's chair. You know that things are rough when you're excited about getting your child a new wheelchair. However, this opens us up to be able to do several things that we haven't been able to do. Things like, go for a long walk in the woods. The new chair can handle that! Go to a fair or other place that would have us walking around a lot. Granted, we had a chair before, but for one it was "an old people's chair". She never complained, she just didn't feel comfortable. Also, there was no restraint. She felt like she was going to fall out. So this was very exciting! We are hoping to be able to go to the Renaissance Fair when it comes to town. We will definitely need a good chair for that. (If we wait until March 20th we can renew our wedding vows- just in time for our 15th anniversary on April 5th!)
Kevin had the appointment made for him to go in for his radiation, only to be told that the doctor that made it didn't know the whole situation, and his thryoid counts weren't low enough. Our doc canceled the appointment, telling him to get more labs done on Wednesday. Of course, being without meds while they wait for levels is making him feel like the human slug- sluggish, swollen, forgetful, cranky and sore. Not too much fun. He's holding up well, but only because there isn't really much of a choice. He forgot to do labs on Wednesday, and by Thursday we had a sick boy. DangerBoy stayed home from school Thursday & Friday both, so Kevin didn't go to the lab until Friday. (By that point our boy felt a little better and wouldn't be contagious.) We're hoping that they will call tomorrow to schedule him. We shall see!
My father went in for the angioplasty to find that it wasn't a stent that he needed. I was very concerned because so many other things around this time seemed to be falling apart for other people. It almost seemed taboo. It turned out that, in his words, there was a kink in the artery. ????? I don't get it, but that's what he said. I've asked him to find out the medical terminology so that I can research it. The good news is that he's fine! My mother had taken the info to give me at first, but she messed it all up out of nerves. She told me there was a 40% blockage but they weren't going to do anything about it, and that he had to stay overnight because they had given him something and had to watch him. Yeah, they gave him a hole in his groin and a six inch metal wand to go inside of the hole! It was a very confusing, stressful day. By the grace of God, he's home and doing great now!
Next came the letter from Make-A-Wish foundation! They sent a parent packet so that you know what to expect, what we will need to have, and so on. We still had some questions, but we figured we would wait until they called to ask.
I believe it was the next day that I watched a pedestrian get hit by a car. I have been trying to find some news on her condition, but so far nothing. The day that it happened I held it together really well. That's the great thing about constant medical chaos and perpetual stress- you handle trauma very well. The next morning I couldn't get the images out of my head. Thank God I didn't see the entire thing. I watched her cross the road most of the way, then I turned my attention to the traffic light. I heard the noise, looked up and saw her flying. I know I didn't have to stop- technically I didn't see the whole thing, but I knew enough to be able to tell them that the driver couldn't possibly have seen her. She didn't seem to realize that the turn lane didn't stop. She just ran right into the car. It turned even more nightmarish after her husband came over, obviously distraught, and yelled out to the paramedics that she was one month pregnant. Yes, I know it could have been worse, but it was horrible. Like a scene out of "Final Destination".
Friday & Saturday this week were unremarkable! I love those days... Sunday after work was wonderful! We went over to Kevin's aunt's house for his grandmother's 93rd birthday. Poor Grandma now has poor memory added to the poor hearing & vision, but she's so sweet, so full of stories. It was a very pleasant evening spent with family that we really don't see often enough. We always have such chaos. It's work, or medical or kids. We're just so busy! It's hard to find the right balance, but at least we make some time.
Lastly, tonight a Make-A-Wish volunteer called to make our appointment! I went into my room to talk to her, knowing that I would break down a little talking to her. I asked her- just to clarify- if our doctor had sent her blessings already. Just to be clear. I had assumed so, but this is so, so good that I didn't want to get Em's hopes up only to have them crushed. She assured me that yes, we are cleared. I cried. I know that this will give her something to look forward to, and then later it will give her lifelong memories. And they will take good care of her, and our other children! Emily has her heart set on going to Disney World here. She's always wanted to fly so I've been trying to convince her to fly to Disney Land if she wants to do Disney, but I also told her that it's her choice & I don't care what she wants to do. If she is dead set on Disney here, there is another fantastic non-profit that I discovered on my Juvenile Myositis Facebook group. Give Kids the World focuses on completely spoiling the family during their stay. I've been trying to help her to understand that she can pick ANY wish that she desires. Some kids have gone to Puerto Rico, some to swim with the dolphins. Others have met their favorite star, gone to an event, traveled to Oregon in an RV, had a bedroom make-over. As long as it's something that makes her happy we're good.
I'm not sure where we stand on her health right now. She said the other night that her arm hurt, but she couldn't tell if it was her elbow or her upper arm. Today it was definitely the upper arm, in the muscles. Her legs are good though, with the exception of the rash flaring up again on her knees. Today it looked almost purple. Most days it's puffy pink. I'm taking my notes and debating on what to do. Tonight was her Methotrexate injection. I'm hoping that will help and she'll be fine. Otherwise, I think we'll have to go back up to 6MLs (18MGs) of Prednisone. I really don't want to do that. I know that she doesn't either. I'm hoping to prevent it. We shall see.
Tomorrow I also meet up with fellow blogger & JA mom! We've been talking on Facebook and occasionally on the phone for quite some time now. It will be so good to meet! Can't wait!
*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!
Tuesday, February 22, 2011
What a crazy week!!!
Labels: arthritis, family, JDM, JRA, juvenile arthritis, Juvenile Dermatomyositis, life, mixed connective tissue disorder, mixed connective tissue disorder; MCTD;, myositis, Raynaud's, scleroderma, thyroid;
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