Well I think we have officially named today Avery's worst day ever. Who would of thought that pulling teeth was worse than brain surgery, radiation or chemotherapy? She has been in pain a majority of the day and we've done our best to try to distract her, but to no avail. It didn't help when the eye dr dilated her eyes and that we had back to back to back appointments. Finally Jeremy called it quits and took her back to Grizzly house for a much needed nap. I attended her last 2 appointments alone pushing an empty red race car and hauling all her supplies around with me. This of course is the day that there are tons of tours going on in the hospital and I got a lot of strange looks as tour groups opened doors and moved over for me and the empty red race car!
Avery's right eye has gotten a tiny bit worse so we are going to go pick out a new pair of glasses....hard to say what color we might go with this time! We also are getting new leg braces for her that will come up a tiny bit higher to help with her knee hyper extension. And lastly, we'll be starting to use an FM transmitter with her hearing aides so that she can focus solely on a specific voice regardless of her surroundings. This will require the person with her to wear a small device around their neck. We are hoping this will help her focus on the right things, especially when in a group setting.
We are excited that we were able to see our friend Belle and her mom and Aunt Jen this week. Luckily they are only here until tomorrow, so their check up was short and sweet. Belle is doing really well and growing like a weed. For those of you that like the Chili's Restaurant chain - check out the kids menu sometime - Belle is on the menu for St Jude! We are also hoping to see Rachel and Rachelle this week when they get here. Rachel is 4 and has Medulloblastoma like Avery. It has been so great to see all of the Dr's, Nurses, and Therapists here at St Jude. It feels like home being here with them and Jeremy and I seem to be so much more relaxed surrounded by the amazingness that is this place. Tomorrow we have big plans to have her Hickman catheter removed and replace it with a Port. A Port will be placed under the skin on her chest and will require a needle poke to be accessed, but will allow Avery to do some of the things she hasn't done in the last year...go swimming and take a bath. We are very excited about this and can't wait to let her splash all she wants in the tub and take swimming lessons! This is a minor outpatient surgery and has a small recovery time. Friday will be our MRI and Lumbar Puncture, but not till noon so we won't have results until late that afternoon, if at all that day.
Hoping that Cy and Jersey Anne are behaving themselves this week - thanks to Dan & Harper for taking care of them for us!
Jenn & Jeremy