When Addyson first got her tube changed from the peg to the mini Amt button she had a hard time adjusting. She was used to the peg. It was in her comfort zone for connecting and disconnecting. It was something she was able to do herself and provided her that level of independence. When we shifted to the new button we had a setback. She didn’t like it. She didn’t want to be connected for flushes. She would actually scream. She hated the newness. The change. The fact that yet again something was being changed right after learning the old system/device. Yet here we are a few weeks later. She is connecting and disconnecting by herself and she is proud. She wanted me to show her surgeon and care team how she can do it herself. She even let me refill the balloon tonight while she held the button so it wouldn’t fall out. She is adjusting so well with all that has been thrown at her. She went to the beach this weekend and wore her bikini and swam and got in the ocean. She had a great time. She knew flushes still had to happen as we can’t skip those but she handled doing them at the beach like a champ! We are so proud of her.
At tumbling we can still see the sadness on her face as she lost a lot of muscle and has lost some of what she used to be able to do but we know it will come back. She will get it. She has determination and strength. She has kindness In her heart. She has a fierceness that is like no other. She has taught me so much over the past few months.
We are currently continuing with our flush regimen while waiting for our Boston trip in May. Addyson goes back to see the Surgery team at the end of the month. We are anxiously awaiting that appointment to better gauge how things are going. Either way we are heading to Boston for a 2nd opinion (it can’t hurt right?).
Below is a video of her explaining how she connects for a flush:
Beaming with hope 