The Hand Bell Concert was beautiful! We would like to thank Avondale Presbyterian for including Corey as one of the beneficiaries of this event. The proceeds will help us purchase supplies for Corey’s weekly Cooking therapy. We love to donate her dinners to the local churches for their Meals on Wheels program. It is very important to us to give back to the community that has given so much to our family.
Today was one of those days I wanted to pick up the phone and call my mother. Unfortunately heaven is a long distance call. It’s Monday so I thought the best way to bring Mom back was to cook one of her favorite recipes. Today Corey made Dedema’s Pot Roast and mashed potatoes served with a vegetable medley. The aroma in the house was almost as good as the memory of her perfume.
We have a busy week with very little nursing coverage. We are interviewing new nurses with a 2nd agency as well as orienting new nurses with our 1st agency but the process is slow. We have two big follow up appointments this week. We will see the seizure specialist and Dr. Long at Bryn Mawr. We are anxious to discuss the changes we are seeing with Corey’s short term memory. In addition, we have to discuss possibilities for the next phase of her rehabilitation.
In addition to Corey’s appointments and therapies, I will be speaking in Harrisburg on Wednesday and Friday of this week. I will not only be advocating for Corey but for all families appealing to the Governor, Senate and the House to increase Medicaid funding for waivers that would give home, community and rehabilitation services. We are also asking for legislation to mandate that Insurance companies disclose their coverage limitations/benefits for acute hospitalization, sub-acute and skilled nursing facility length of stay as well as in-patient and out-patient rehabilitation services to their members.
If we can teach you all one lesson from our experience it would be to please look at your insurance policies. Think of the worst case scenarios of any injury or illness. Please think through the steps you will have to take to care for your loved ones. In addition, for those of you who are parents of young adults; please document their decision to appoint a guardian for medical decisions (especially if they are 18 or older) as well as their preferences for medical care. Have this documented and notarized. You may never need it, but God forbid you do it will help you advocate on their behalf.
Corey continues to be disoriented. I have been networking with TBI families and professionals within the Brain Injury Association. What we are experiencing is extremely difficult but not unusual. It was expected by some. Corey is having difficulty sleeping (day/night). She will doze off but awaken with extreme anxiety and/or night terrors. She does not recognize “her room” or have an understanding that she is “home”. It’s not the home she remembers. She doesn’t always recognize me either. Tonight she said my hair was too long to be her mom…she remembers my shorter hair style. I tried showing her photographs of our family but there was no connection. Eventually she allowed me to hug her. She smelled my perfume and suddenly “recognized” me.
Some families and board members have explained now that Corey can articulate her thoughts, she may be expressing the anxiety she’s felt all along but could not communicate prior to this point. The disorientation could be a phase and/or her short term memory could reflect permanent damage from her injury. We must wait it out and be patient. Comfort her, reassure her and try to work through it the best we can.
WE NEED YOU…I would like to ask you all for a favor. This phase is emotionally difficult for us. If there is a day we cannot post an update could you please write a message to Corey anyway. If you know her personally, write one of your favorite “Corey Stories”. If you’ve come to know her via this page, send an encouraging note. You all are an integral part of her recovery. Your prayers, encouragement and support keeps her focused, motivated and spirits uplifted. We are choosing to approach this new challenge as another phase we will get through; just like the burning mouth syndrome. She has come so far in 18 months…we have to keep a positive attitude and continue the momentum, looking forward to the endless possibilities not yet presented!
Let’s rally TEAM COREY, xoxo