I wanted to send the recap of June-July's events so far: June 24 Ultrasound of lymph nodes (neck and abdomen) --results came back that the lymph nodes were not enlarged. Woot woot The plan PET scan for 7/7/26 was canceled and rescheduled for 8/6/26. She will continue to get blood drawn to check EBV levels every 2 weeks EBV levels: EBV levels (7/1 11,800 and 7/14 5500). The numbers are coming down 7/14/26. Appointment with gynecologist the same day- Appointment went well. No

Very quick update June 26th Kendall had the cardiac cath. After the procedure the cardiologist came in and said the pressures in the right side of heart were higher than they've ever been. The explanation to us was that the right side of her heart is very stiff and it takes extra effort to pump blood to it because she does not have a left lung to help the pressure to be normal. She was discharged about 3 hours after the cath and the doctors told us to stay close to U of M or

Good evening. Hope everyone is doing well. Here are the latest updates JUNE 18 ENT. This was a 6 month checkup appointment. He did not put the scope down her throat this time( She smiled big when the doctor said that). The Dr went over some details from when Kendall saw him 6 months ago. He doesn't want to do an airway procedure because her vocal cords could be damaged and/or there would be a lot of swelling causing her not to breathe and require a tracheostomy that would b

Today was the neurology testing at a U of M center near the hospital. We were there from 8am-230pm. We were able to talk to the psychologist for about an hour so she could gather information and get more of Kendall's history before she met her. Kendall was with the psychology tech(don't know if that is the right title) the majority of the day. There were literally hours worth of paperwork and surveys we had to fill out while Kendall was being tested so that made the time in t