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Latest Brey Update
I know I haven't updated in a while. There isn't much to say. Breylon started a new med to help with the random bleeding, but the med is suppose to be used only for short-term. To help Breylon, he will need to take it over a long period of time, and this will lead to further deterioration of his liver. I know, you may wonder why even give it to him, but it's a choice between what is more immediate. Do we want to wake up one morning and find out Breylon has bleed out in the night? Sometimes, that seems harsh even to me, but it's a choice that they have to face at this point in Breylon's life.
Overall, Breylon has his good days, and his bad days. He struggles with pain sometimes, yet others he smiles and enjoys the people around him.
Last Update: Dec 30
Recently, Breylon's health as taken some roll-coaster turns. On Thursday night/Friday morning, Breylon started bleeding from his nose, mouth(gums), PICC insertion site, and his stomach and intestines. His hospice doctor, Dr. M, said that this is due to further organ deterioration and failure (kidney & liver, specifically). The options are limited for Breylon, but they are trying to keep him comfortable. The following day, Saturday seemed a little better for him. He was more awake and alert, but Sunday(today) was horrible. He was weak and slept almost all day. He couldn't even sit up by himself. This was alarming, but there isn't much that could be done. Tonight, he seemed back to himself once he woke up from a long, long nap. He was watching Dora, and wanting to have his feet rubbed.
But tonight may have been good for Brey, it wasn't for Bryn. She has been taken to the hospital tonight. Bryn is Brey's younger sister. She is 11 months old, going to be a year on Jan. 11th, and she is another Mito Warrior. Unlike Breylon, her battle is just beginning. As part of her mito protocol she is being taken to the hospital. She has the flu, vomiting and diarrhea which can cause dehydration. Any stress on her body can cause the mito to progress quicker in her. We don't want that. Hopefully, they will just give her fluids and send her home tonight.
Christmas with Brey
This Christmas, I spent all day over at my sister with Breylon. It was lovely. We opened gifts at 9, and he was happy and excited. Breylon always loved Christmas. He enjoys opening presents. It's wonderful to watch the joy on his face. He actually got up, and walked around for a change, which he hasn't been doing. In fact, he seemed to be stronger than he was over Halloween. He was talking and interacting and it was all together wonderfully exhausting.
Thank you everyone for the pictures/drawings for Breylon. I showed them to him today. He recognized all of them, and love them.
www.youtube.com/watch?v=Fv1iKY… Sorry for the poor quality of the video. Breylon is hard to focus and contain.
Thank you so much for bring joy to my nephew.