Happy Memorial Day Weekend to everyone! Just wanted to give an update since it's been awhile. Julia has had 6 Lp's @ Shands now. It has been so nice to be so close to home. When she's done we get to drive home & she can do her resting in her own bed, she has been especially happy about that. Things haven't been all roses for her though. About a month & 1/2 ago she had an Lp headache afterwards. It got pretty bad, she was vomiting for about 48 hours & just plain miserable for about 4 days. I'm glad that hasn't been a common occurrence, I felt so bad for her. Two weeks later when she had her Lp they hit some scar tissue & had a hard time getting the needle in, it took 3 tries, so afterward she had a backache for a few days. She is a tough kid, not sure I could go through what she goes through & keep such a positive attitude.
I also wanted to let everyone know that Julia recently got a power wheelchair. I've kind of put off posting about it because it seems like such a big change, but I didn't want people to worry if they saw her in it. It's not because she needs it all the time, she hasn't gotten to that point. But there are days that she just can't keep up or is too worn out. We use it on those days, mostly the day after she has her Lp or when we have big plans or long days involving a lot of walking. It helps to conserve her energy so she's not too worn out from walking to enjoy the day. She's a little embarrassed by it but also thinks it's kind of fun learning to zip around & navigate in it. She definitely agrees that it is a big help when she's tired.
All in all things are good all things considered. Hope everyone has a blessed weekend!
