The technician was super impressed with how cooperative Keira was during the ultrasound. It took almost 30 minutes and Keira never complained once. Since she was able to lay so still she was able to get some really good pictures of her organs and everything looked normal, which is what we like to hear.
Keira will have to go back again in six months for a follow-up ultrasound but this was much better than an MRI. She wasn't allowed to eat until after they were done but no poke and no anesthesia so she was happy when we left to get her sprinkled donut.
A cute little K story...
After Keira was done they gave her the sticker bin and she immediately picked out one and handed it to me. When I told her that I didn't earn a sticker she said, "but mom I am proud of you because you didn't eat anything all morning, just like me." She's such a thoughtful girl... I wore my sticker all day with pride. :)
Our visit with Dr. E today was uneventful. Keira has been complaining more frequently about headaches. We're not sure if she's just able to better articulate what is bothering her or if this is something new. We will continue to monitor her and if the headaches get worse we will check in with her neuro-oncologist.
Keira has handled the dex pulse pretty well this week. She has moments where she's super cranky and irritable, but I suppose that is to be expected on such a high dose of steroids. I hate that we have to put her through this every 28 days but I am also thankful that there is something we can do to keep her OMS symptoms away. These 3 days are a great reminder for why we need to do more to help fund research for rare diseases. If we don't do something, who will?!
We celebrated the end of dex pulse #11 with movie night - Cinderella. K's treat of choice - brownies with vanilla ice cream. She certainly earned it!