6:30 am - Yesterday, I took Ellie to Vanderbilt for a checkup. The Drs were all very pleased with the progress she has made and how well she is doing. They did have concern over her liquid intake but felt like cutting the wires would help that for sure. They cut the wires off and he banded her mouth shut instead. Her teeth are in same position as being wired shut but the positive is that she has to wear them 22 hours a day, which means she can take them off to eat soft foods, brush her teeth then put them right back on! This will for sure be like this for 4 more weeks but I'm not sure after that what the plan is. The bands are on there tight and placed up and down while crossing over. Hard to explain but it's not like you just hook the top to the bottom. And she still has that splint in her mouth - this is to ensure that her teeth are in the correct new position. Anyway, as soon as we got in the car to head home, we stopped and got her a smoothie. She took her bands off and drank the smoothie all up. Then, as I'm driving back to BG, she tried to get her bands back on and could not. :( She became terribly frustrated and upset. She tried and tried. Then literally fell asleep crying. Broke my heart. I called Dr. Compton (thank you God for Tom Compton!) and he came over and put the bands on her. She never took them off again last night for fear of not being able to get them on again. We are going to go to Dr Comptons office this morning for a "lesson". It was a frustrating experience for Ellie and honestly this stressed me out more than the surgery itself!
The frustration is setting in for Ellie in not being able to communicate like she normally does. She tries to talk to us and we guess what she is trying to say, after about 4 guesses, she just looks defeated and walks away. I'm saying Ellie please text me! I know this has to be so trying on her patience. I suggested carrying around a notepad or just using the notes on her phone to type what she wants to say but I guess that gets old. She wants to be understood with her speaking.
Please pray with me...
• That she can master these rubber bands while keeping her teeth placed properly in the splint!!
• That she will develop a new level of patience while trying to communicate with her mouth banded shut.
• That her friends will continue to give her positive energy and being with them with lift her spirits and that everyone will begin to understand her better.
Thank you again for all who have continued to stop by with food, flowers, and gifts. It really makes Ellie feel good to know people care. And it makes me feel so completely and utterly blessed to have such wonderful giving people in our life.
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