I meant to update this a few days ago, but I was too lazy and decided to stay on the couch instead.
My current weight is 63.2 lbs. I tried to eat at Applebee's over the weekend, and I lasted like 5 hours before throwing it all up, but oh my god it was delicious. I don't want to give up trying to eat. Food is a staple in my life that I just cannot give up.
We have been going to the movies a LOT lately and we're going to be going even more when all these other awesome movies start coming out. I've said this multiple times: it is so good to get out of the house, even with my TPN in tow. I actually had to unhook last night in the middle of Man of Steel. haha.
I have thrown up maybe 4 times since Thursday... I think my phobia has gone away, and now it just annoys the hell out of me throwing up.
We were watching a dog for one of John's friends for a month, and he just went home this past weekend. Friday he ripped my needle out of my port, tripping over my TPN line as I was letting him outside. So that sucked.
Saturday we went to the PPTRC after having to wait for 3 extra weeks of not seeing them. It was amazing and I can't wait to see the pictures... whenever I actually get to anyway. It was a difficult day, though, because they had to wheel my in the corral, so I got sand all up in my tires. We're going to have to figure something out because I would rather not ruin my wheelchair. It was also insanely hot and I forgot a water bottle so I felt weird once the sun really got to me. But it was amazing nevertheless. Raven was working with some other kids, so I hung out with Jewel and Ally.
I was having an issue with edema in my feet over the weekend, so I stopped my fluids. We decided to cut it down to 500mL instead of 1000mL, and I started that change today. We'll see how it goes.
The biggest update for now is that I'm getting AFOs for my feet. AFOs (ankle-foot orthosis) go on and around my feet and calves in order to help keep my feet from dropping when I walk. It's basically a foot/ankle brace. We went to the orthopedics at Evans to see if they had any that already fit me, but they didn't. So I had to get my doctor to put in a referral for me to see a specialist off post so I can be fitted for some. Still no word on that yet. I'm assuming that my doctor will call us this week sometime because that's just how he is.
My thoughts are all jumbled again, so my blog posts probably won't be very interesting for a while.
Still, I want to thank whoever reads them.
LOVE my AFOs. Hope all the changes help and you can actually enjoy some eating. <3 XOXO <3 you're amazing!
ReplyDeletePsalm 20
Melissa, it's awesome that you have 3 cats. I have 2 myself (adorable boy and girl!) It would be great if you can post a photo of them=)
ReplyDeleteI came across a young lady at the mall today who, like yourself, has mngie. When I got home I wanted to learn a little about it. That's how I came across your blog. Your entries are exceptional for a number of reasons. I wanted to ask whether you receive or will receive a bone marrow/stem cell transplant? (I'm not very familiar with this treatment, but I haven not seen anything about it on your blog from what I've read).