Sorry If I have left you all hanging this week. It's been a long one. Things did not work out as I had hoped. I was hoping to take Avery home by Thursday so I could attend my friends funeral services. Unfortunately Avery had other plans. I think he just wanted to hang with his favorite nurse for a couple more days. He seems to follow her schedule :) he has been having lingering respiratory issues as well as increased lactic acid. They were able to do his EEG (test for seizures). After 48 hrs, it was decided that he is not having seizures but an increase in his spasms. Don't know which is worse :(. Neurology has increased his meds in effort to make him more comfortable. Another issue his the growing curve in his spine that is causing further respiratory issues. Problem is there are not any good options. It's either bracing him which comes with his own set of problems or surgery which is not an option (just too risky). So we are just going to do what we can to keep him comfortable as always. At this point in Avery's care any treatment comes with many risks. Any hospitalization is going to come with more issues/decline etc......We continue to be grateful for the time we have with him because it can be taken away in an instant.

Please pray for yet another mito family, Cooper Knight lost his battle last night. It was a warrior for sure. Also continue to pray for the Cashman family as they learn to live life without Paul.