It's been quite a while since my last post. Mostly due to the way things had been going. Braxton was hospitalized again in November. He had another virus and we were unable to keep control of his fever so the seizures wouldn't stop. While in he maxed out on a few meds and started others. … Continue reading My boy lost his smile
Never take for granted the little things. Every new day is a miracle.
I love Braxton with all my heart but it’s not fair to him if I were to say I wouldn’t change a thing about him. It’s not fair to him all of the appointments and all of the seizures. None of this is “fair” to him.
I’m late posting. I could say I have been busy but anyone that knows me could tell you I’ve had plenty of time. I struggle to turn my thoughts into something people can understand. Sharing enough but not too much. I’m going to let photos tell as much of the story as possible. So here … Continue reading Surgery
Braxton will be having surgery on Monday. He will have a peg tube placed. I'm scared, excited, nervous, anxious, just about every emotion possible. It's a good thing I just know it. The NG tube is such a pain in the butt. It's a tiny torture device. I am happy to see it go. Ready … Continue reading A big day!
"find beauty in all things"
"It gives me hope"
"I will always dream big for my boy but for now I am going to help him start small"
Please refer to this link to learn more about 2q24.3 microdeletion. I have read this packet of "information" more times than I could say. Each time I hope to find more information. Each time I come up with nothing to add to what I already know. I say "information" because it raises more questions than it … Continue reading 2q24.3 microdeletion
"Every child is going to be different. This we all know. What we don’t know is what has happened over the life span of one person with this unique syndrome. I want Braxton to be that child that can offer some sort of hope."