Home » Posts tagged "chiari malformation"

I Don’t Know How To Do This – My Son Needs Brain Surgery

I have written this post in my head for weeks. This is so much harder than I can describe, but I am going to try, because we need help, and people need to know what this is like. I need to be able to find others who have had this experience. I need other mom’s who have walked this path and can help me walk it. I need to know that you can survive this as a parent. That my heart won’t break, and that if the worst happens, we can endure. Maybe I can be that person for someone else in the future. Please follow the link below to donate to my son’s GoFundMe Account if you can! Click to Donate Now! My son, Ben, is sick. He has autism, ADHD, anxiety, depression and asthma since he was born. This was hard enough. This was enough to make me...
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Star Wars – The Last Jedi & Chiari for Christmas

  This week, Damon and Ben got to preview Star Wars – The Last Jedi, and they loved it. A few months ago, Ben was diagnosed with Arnold Chiari Malformation with a 4mm tonsillar dissension. This means his brain is being pushed into his spinal cord by 4mm.  At 5mm you are considered surgical by almost all neurosurgeons, especially if you are symptomatic. I have/had Chiari and had brain surgery or decompression surgery in 2013. Technically I had no tonsillar dissension because my Chiari was caused by a skull malformation called hypoplastic posterior fossa. It is genetic, and several family members have it, including my son. Surgery saved my life, but so much damage had been done, that I will never be healthy, and am considered to have traumatic brain injury from high pressure in my brain. My pituitary failed, and several nerves were damaged, including my vagus nerve, which...
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I am Free!

I am finally released from bed rest and strict limitations on my activity. I can even drive. Today is a glorious day. I saw my doctor on Monday, and am healing slowly but surely. They are still concerned that my wound has not fully closed, and about the possibility of infection, but I am careful, and they will continue to monitor that. However, I have reached the glorious mark of six-weeks, and my doctor officially declared that I can start to resume normal activity and even drive my car as long as I don’t feel impaired. He’s even insisting that I taper off of medications. Hurray! Mostly I am a fan of being able to drive again. Driving is so linked to independence. I couldn’t go to the doctor without a ride, and I couldn’t do a lot of the things I normally do to help my family, like grocery...
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