Brennan's Journey with Chiari Malformation: September 2016

Hello all! I love that the weather is changing to cooler days. The smells of fall are in full force at our house! I may love this weather but this weather does not do well with Chiarians. Pressure changes... rain... it just does not like them. Brennan has been having roller coaster days. We have been on the new meds for 2 months now from Dr. Bambanek. We love when he has good days. It makes it so much easier in the house. Then the days when things escalate we take it hour by hour. We started school and was hoping this medication for ADHD would help him focus. His behavior is good but homework not so much. We have struggled to get it done at home. Some days it is a fight.. other days it is good. We have been trying to keep a routine with him after school. He is a routine type of kid. We continue to be monitored by Dr. Bambanek by seeing him every 3 weeks. Any new behavior changes he wants to be updated on. I love that he is keeping up with him. Hard to find a doctor that cares. He still continues to have the headaches but nothing like what they were. We monitor them and anything extreme we are to call Dr. Frim.

On a fantastic note... Brennan graduated from physical therapy last week. He has been working hard for over a year now and has met his goals. Chris and I will continue to work with him at home on things. We will miss his physical therapist Andrea very much. She is truly an amazing therapist. He continues to have occupational and speech therapy at the hospital. He is working very hard to meet his goals but we still have a long way to go.

September is known for Chiari Malformation Awareness month. I know.. I know.. some people on my Facebook probably got tired of seeing everything I have posted about Chiari. This is very important to our family. We advocate for Brennan since many people do not know about it. I get excited when we meet someone that has been diagnosed because they understand how it is. I am hoping by posting all the information that some have a better understanding. This condition I would wish upon my enemy.

We continue to keep in contact with Dr. Frim on a as needed basis unless something drastic changes with Brennan. With Chiari.. anything can happen. His next appointment with his rheumatologist is in December regarding his Ehlers Danlos Syndrome. He continues to take his daily pain med to help with the joint pain. Every 6 months we are monitored by Dr. Moore.

We are selling t-shirts and hoodies to help with Brennan's journey with Chiari but we are also helping my dear sweet friend Donna who also has Chiari. She recently had shunt surgery to fix it. We are hoping she will not need another surgery for a while. Proceeds from t-shirts and hoodies will help with both of their medical bills. Attached is the front and back of what they look like: