{"id":142,"date":"2026-06-18T20:42:42","date_gmt":"2026-06-18T20:42:42","guid":{"rendered":"https:\/\/cota.org\/cotaforrylee\/?p=142"},"modified":"2026-06-18T20:42:45","modified_gmt":"2026-06-18T20:42:45","slug":"life-lately","status":"publish","type":"post","link":"https:\/\/cota.org\/cotaforrylee\/2026\/06\/18\/life-lately\/","title":{"rendered":"Life Lately"},"content":{"rendered":"\n

Today is the day! Rylee is heading into surgery for her ileostomy takedown and spinal cord untethering procedure.<\/p>\n\n\n\n

After everything we experienced following her colostomy takedown in January, it\u2019s understandable that we\u2019re feeling a bit anxious. Thankfully, this surgery is expected to be lower risk than her previous takedown. There is less bacteria present in this section of the colon, and because her colon is not duplicated this high up, the procedure should be much more routine. Following surgery, Rylee will remain inpatient while her team closely monitors her pain, recovery, and any signs of infection. We are hoping for a hospital stay of about 5\u20137 days, but as always, her timeline will depend on how she does.<\/p>\n\n\n\n

In other exciting news, Rylee has officially been listed for a kidney transplant as Inactive Status 7<\/strong>. This means she is now on the transplant list and accruing wait time while we complete a few remaining steps, including living donor evaluations and recovery from this ostomy takedown. If everything goes smoothly, our surgeon anticipates clearing her for transplant in approximately six weeks. After that, the focus will be on completing living donor workups and scheduling her transplant. We are truly in the home stretch.<\/p>\n\n\n\n

Rylee has also been working incredibly hard in physical therapy. She is now able to stand for up to 25 minutes at a time while holding onto the support bar, and she will take steps when someone holds her hands. She does especially well while wearing her SMO braces. Without them, her ankles are still a bit weak, but she continues to gain strength every single day. We are so proud of her progress and are hopeful that, at this rate, she may be walking independently by the end of the year.<\/p>\n\n\n\n

Thank you all for your continued prayers, support, and encouragement. We will keep everyone updated on her surgery and recovery during this hospital stay. We\u2019re hoping for a smooth procedure and a short stay so we can get back home soon.<\/p>\n\n\n\n

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Today is the day! Rylee is heading into surgery for her ileostomy takedown and spinal cord untethering procedure. After everything we experienced following her colostomy takedown in January, it\u2019s understandable that we\u2019re feeling a bit anxious. Thankfully, this surgery is expected to be lower risk than her previous takedown. 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