It’s been a quiet weekend which is just what we needed after our long week. The presentation to the PA Brain Injury Coalition went well Friday morning. I spoke for 30 minutes with a 20 minute Q/A from the assembly. The Coalition is comprised of the Dept. of Health, Dept. of Welfare, Dept. of Corrections, Dept of Education, and the Rehabilitation Facilities Association, the Brain Injury Association, several Parent advocates and TBI survivors.
It was a very good learning experience for me and the committee found Corey’s story compelling. I was asked to share the struggles we’ve encountered in the last 18 months. This may seem harsh but I was also asked to summarize the details. We all have a story and we all have similar details. This was about the road blocks and how we can work towards change. The parents (all present represented TBI patients from the 80’s and early 90’s) were shaking their heads as I shared our story. Their collective comments during the Q/A were filled with distress as they realized that our struggles are no different today than theirs were 25 years ago.
The Coalition is working towards bringing awareness to Traumatic Brain Injury as well as fight for legislative changes that will protect and financially support TBI patients. Through their efforts, they are making in roads to increase funding. I have been asked and agreed to join them serving on Education and Legislative committees. How can we aide the Coalition? We need to continue contacting our Federal and State Congressman and Senators to push for increased funding. Federal funding aides the States, the States then can financially support the waivers for community and home services as well as the local school districts trying to support our TBI children. TBI patients comprise more than 40% of all disabilities and will be the first to face the majority of current and future Medicaid budget cuts. Families cannot go another 25 years before receiving the help they need to care for their loved ones!
Friday afternoon Corey met with Dr. Long at Bryn Mawr Rehab. We have some difficult decisions to make based on Corey’s therapy. We are scheduled to lose therapy from our current company in two weeks. Corey’s foot drop has improved but not enough to help her make progress walking, especially now that her left leg is moving. It was suggested we look into Botox shots and serial casting. That typically is an out-patient procedure. It is also the step before surgery. Unfortunately, Corey can not physically handle out-patient therapy or casting. Dr. Long also suggested that if we were to cast her, we may just be prolonging the inevitable. If we had the luxury of continued home therapy it might be an option but given our circumstances it might be time to look into surgery. Now that Corey’s left leg is advancing, it might be good timing. This coming week we will go for a consultation with a Neuro-Orthopedic Surgeon.
If the Doctor agrees, Corey would have her tendons lengthened and then go back to Bryn Mawr for inpatient rehab for 2-3 weeks. When she is ready for discharge we can evaluate her stamina and decide if she’s going to continue with out-patient or continued home bound therapy.
The Tegretol from Teva pharmaceuticals arrived today. We are hoping that we will begin to see a positive change in Corey’s behavior. She continues to have short/long term memory loss as well as anxiety, anger, fatigue and disorientation issues. Caring for Corey has been extremely difficult lately. We’ve asked for specific requests in the past and tonight we’d like to ask again…we both need patience, spiritual strength and increased physical stamina.
Corey we have another big week coming up. There is a Japanese proverb that we need to remember…Fall seven times, stand up eight. Henry Kaiser wrote; Problems are only opportunities in work clothes. Rest well honey, we’ve got to get back up tomorrow and get ready for work! I love you, xoxo