Aug 27, 2020 Latest post:
Sep 14, 2020
Just wanted to give a thank you to all our friends, family and clients for the love and support we have recieved. Rylands genetic syndrome causes seizures in 80% of cases by age 2. August 19 (3 days after his 2nd bday) he stopped breathing and fell limp in his nanny’s arms during a typical day. She gave him mouth to mouth and he quickly began breathing and gained consciousness within 2-3 minutes. She called 911. Etc etc. (we are so FREAKING THANKFUL FOR HER, WOW!!!) we have been at the PICU at Hurley getting every test I can possibly push for to hopefully get answers. His bloodwork normal, chest X-ray normal, ekg normal, eeg normal. (Echo was just done waiting on results, MRI tomorrow and long term eeg happening soon) Yesterday was very scary! I had to cancel 2 1/2 days worth of clients. Who have been all so great to me and understanding during this hard time. THANK YOU ALL! We will be staying here again tonight. In hope to get some answers to what happened and monitor him very closely. I
August 21st update: Update on our little man Ryland. No good news: This morning Ryland went for an MRI. While trying to intubate he had another episode where he stopped breathing and turned blue for a few seconds. I was told they could see there was no abnormal brain activity or loss of oxygen and it self resolved quickly. The neurologist quickly viewed the Imaging to be surprised to find a severe deformity near the brain stem called BASILAR INVAGINATION . It is causing COMPRESSION of the brain stem and twisting of his spinal cord which they believe is why he is having these episodes along with his delayed gross motor skills and swallowing problems. We were transferred ASAP to UofM to be seen by there pediatric neurosurgery team.