1.) A wheelchair modification evaluation for the boy who has out grown his first wheelchair from 2004. He has ordered a new, glow in the dark chair of which I approve wholeheartedly. The last time we met our OI buddies at Downtown Disney I couldn't find him in the dark. Except for the occasional "screeeeeeeee" of a tourist he had just mowed down I had no idea where the child had rolled off to. I asked Rick from Custom Mobility if he could also install a tracking device.
2.) A first time wheel chair evaluation for the baby who when presented with the color chart pointed to purple three times. It seems she wants a purple wheel chair. Apparently it's a good thing I said yes as I have to interject here that today while we were making some drug runs the baby had her very first ever temper tantrum in XYZ pharmacy. When we walked in she pointed to a shopping cart informing me she wanted a ride in sign language. I said no as we were just zipping back to pick up one script and zipping out. She signs "PLEEEEEEEEZE!" Um. No, again."PLEEEEEZEEEE!" Nope. Boom! Temper tantrum ensues. How sweet the glimpses of normalcy are. I was terribly proud at that moment.
3.) We've been to orthotics to have a shoe lift made for the boy who has a significant leg length discrepancy after his horrifying 2008 femur fracture and 2 major surgeries that followed. Tonight I found the other two he had lost. Of course.
4.) We've had a school physical for the baby who will start public school pre-k in the fall. She needs a new DAFO so a new script was obtained while we were there. Her physical therapist recently asked what in the heavenly realms had happened to the foam piece on the top of her current DAFO. I hadn't noticed that someone had taken a big bite out of it. It probably wasn't her as I don't recall seeing any pink foam turds recently. I have a mental image of one of her friends at the learning center she attends gnawing on her leg during circle time? As part of her school physical she had to have a TB skin test, Prevnar immunization and a hemoglobin. We had to return in 48 hours to have the TB test read and pick up our paper work. Another trip. Of course.
5.) Saw the fabulous orthodontist who is part of the USF/CMS cranio-facial team the boy is followed by. Children with OI have severe dental issues. In the boys case he has miraculously never had a cavity or severe tooth discoloration but he does have the typical OI malady of adult teeth erupting and baby teeth not budging. We have already had 8 baby teeth extracted at once in the big city hospital and now we are looking to remove 4 adult teeth that have absolutely no where to go. Two of the four teeth, however will require an oral surgeon along with the pediatric dentist and another hospital admission. And then... in about 9 months...."he will be ready for his braces." Oh joy.
In the quest for organizing my house, ridding it of clutter and making the patrons of Freecycle very happy with my discarded treasures, I have managed to misplace my appointment calender so I have no idea what is on the agenda for next week. It's just as well. In addition to everyday
Hopefully, we will be graced with a visit from our favorite vegan artist this week so I'm cooking ahead. Garbanzo bean soup is in the crock pot and some Basil Pesto with fresh basil from the garden and whole wheat linguine is on the menu. I truly hope she shows up because we really miss her and no one else in this family will eat this
So what's on your agenda for this week?