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As I look back at these posts that I wrote before I started blogging, I see how scary things were. I never got scared “in the moment” of an episode. I would always hold on til the episode ended and then I would lose it. I wanted to be strong for my Brandon and wanted him to feel safe and that I was taking care of him the best I knew how…. Read More
Brent has a hole in his G-tube! I have been on the phone talking to 10 different people who have no clue of what they’re doing …….. ugh!!!!!!! You would think after having a feeding tube for 14 years that it would be a piece of cake dealing with these companies… *SCREAM* #feedingtubeissues [ it never ends…. ]
This guy right here made me the mom I am today. With multiple brain surgeries, feeding tubes, feeding pumps, hip surgery, multiple tendon releases in each leg and foot, (VNS) Vagus Nerve surgery, 2 spinal infusions, surgery on each thumb (inward thumb/visibility of L1 syndrome), Budd-Chiari Syndrome, and numerous seizures that more than 50% of them were life threatening. He was on life support during those times. I can truly say that this child… Read More
Tonight, I sit here thinking of all the what if’s, what could have been’s, and I don’t know why I allow my mind to go in that direction. Brent is 15 years old. He should have a permit and learning how to drive. He should have friend’s over spending the night, coming and going and having a busy schedule of some kind.
SURVIVING TWO THRIVING...with L1cam Syndrome 