I hope that everyone has had a wonderful Thanksgiving! We have so much to be thankful for. I am so thankful for my amazing family, and how well we get along. I think that is one of our biggest blessings. I'm thankful that we were all together today. I'm thankful that 2 of my children are mostly healthy, and that Emily is able to walk again. I'm thankful for my job, our income, the food on our table and the roof over our heads. Who could ask for anything more? Sure, it would be nice to not be overwhelmed with medical bills, it would be nice to have a bigger house, my picket fence, all of my childhood dreams fulfilled. But really, it's just stuff. Stuff can't make you whole. Only other people that truly love you, and God can fill that. I am blessed. I hope that everyone else was well today, and I hope that all of you reading (and all of my JA & JDM families!) had a day as wonderful as mine.
So, on to the issue at hand... I knew that it wasn't an easy infusion on Tuesday, but I didn't realize how much digging they had to do to find the vein. She was sitting on my lap blocking my view. (I'm only 4'9") I was snuggling into her, and rather focused on the fact that my leg was falling more asleep with every passing second. I was so focused on that & trying to keep her calm that I didn't even notice. This is what happens when the veins hide and roll:
OUCH!!!!! I have never seen anything like that. I happened to notice it today since she had short sleeves on again. I almost dropped the plate! Isa has given me a few tips that we will have to try next time. I cannot even believe that.
Last night we started the new lower Prednisone dosing! Granted, it was only 1ML less, but I'm happy to say that she can once again button her favorite pair of pants! She tried to wear them the other day and couldn't get them buttoned. I know it will be a slow process, but at least this helps a bit.
I'm not sure how I neglected to write this, but I shouldn't have! As I was saying 2 updates ago, we keep planning shopping days for clothes for all of the kids, but generally by the time I get home Emily's too tired to go, or we have other commitments for the evening. Because she's been growing at an alarming rate we just can't keep up. I had bought her a few shirts not long ago, but it was about ten pounds ago. She's been trying to hang on to her old favorites, which she quite simply cannot fit into. She keeps asking me if she can wear size 5 or 6X shirts, but she can fit into 8-12's. Soooooo, her teacher from school bought her a few shirts! I was so touched. Just the idea that she understands the struggles that we are going through right now, and felt compelled to help really warmed my heart. I knew that she was awesome and special to begin with (she was a special needs teacher until this year), but I had no idea what a special soul she is. Yet another thing that stood out to me when I found out they were going to the mission as a class. And another reason that I feel so blessed. I hear stories of children, teens, that get penalized for being sick, for being wheelchair bound. There's no compassion, and many of them are too much for the school to deal with, too hard or complicated. Our school put a system in place with Emily and her Raynaud's last year. To HELP her. Because that's how they are. I cannot think of one teacher or school staff member that I don't like. The principal is so cool, so down to Earth, and yet she has brought the school from the low grade that the former principal helped them earn to a 'B' in her first year there. She obviously loves her job, she knows and loves the kids. She works with the teachers, and they now all work as a cohesive unit. (I hear this from the teachers, but you can SEE the difference, too.) Unfortunately, Emily will have to change schools for middle school, and I'm sure that none can compare to the awesomeness that is her current school, but we'll cross that bridge when we come to it. Hopefully because she is such a good, sweet soul and everyone loves her, hopefully people will continue to bless her. Emily is truly one of those special people that makes other people better. I don't know how or why, but I am in awe of the way that God uses her.
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