Home » Archive by category "Chiari"

The Fine (and Essential) Art of Procrastination

I am totally avoiding things. On the upside, my house has never been more organized and I have sorted, books, papers, receipts, clothes and toys that have been lying around for years. On the downside I have a lot more to do, and the more I get rid of or sort out, the more I seem to have to do. One of those things is an update on my son. We went all the way to Stanford yet again. He’s ok. They don’t want to do surgery if they don’t have to. We did full scans of his back and saw a geneticist and returned home with a solid meh. They don’t seem to really know how to help him. It’s a lot of wait and see if he gets worse, since he’s basically stopped improving. Exercising helped many things, but solved nothing. Medications for migraines are the same. Ultimately...
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Stanford Consultation Results – Ben Update

Two weeks ago Ben and I drove to Stanford with an amazing friend in her RV. It may not have been the best way to travel in retrospect, but with what I knew about Stanford (nothing), my anxiety and Ben’s, and our needs it was best at the time. First – my friend was absolutely amazing! She was the patient with a surly, sick teenager, and understanding of his autistic moments and needs. She drove us safely all around the area and was a great support for me as she has endured many of my same illnesses and has had surgery to correct Chiari Malformation. Her service dog, Moby, was calming and distracting for Ben at important times, and an example of how amazing service animals can be. Everyone loved him everywhere we went and his behavior was perfect.  I don’t know how to thank her enough! Second – Stanford...
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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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