Hi Everyone,
We need to call on our prayer warriors. We have tackled some very difficult days and continue to wait for answers. We haven’t written primarily because it’s been a very emotional month. There are some positive improvements to report but overall, this month has been hard work!
The following highlights are mixed with some difficult realities;
I installed a grab bar in Corey’s bathroom. She can now walk with her walker independently into her bathroom, manage her garments and sit/stand with minimum assistance.
In the morning, she can put on her shirt
In the evening, she can remove her shirt, shoes and pants from a sitting position.
She can roll onto her back, kick her feet off the side of the bed and pull against the bed/sheets to a sitting position. independently.
Corey has advanced in her ‘retail therapy’. Prior to this month, she could google what ever she was looking for. Pictures would dictate her choices. She now will look at a magazine, select the item she’s interested in, find the letter assigned to the garment, find it’s description, sku number, price and available color choices. She then transfers the information to her journal or index cards. This is a cognitive exercise to help her with identification, organization, categorization and transfer of information all necessary for simple tasks used with note taking and/or writing grocery lists.
The recumbent elliptical bike has been a God Send. Thank you to everyone on Team Care for Corey and their supporters. She is riding 1 1/2 miles four days a week. She has also advanced in her matte exercises as well.
Corey’s emotions have also improved. This actually has been the most difficult part of her growth and recent healing albeit an incredible achievement. She is now more embarrassed about her wheelchair, her brace, her cane and her walker. The awareness of this emotion is a huge step forward. She often asks if she brushed her teeth, if she’s wearing the appropriate clothes to go out, does she need makeup and can she braid or style her hair a special way. Her personal awareness is advancing.
Along with this awareness comes sadness, frustration, depression, insecurity and anger. Her memory loss compounds these emotions. Corey asks me questions such as;
C – what are the chances my children will get what’s wrong with my brain?
C – why do people talk to me like I’m deaf?
C – what happened to me that I’m like this?
C – when will I get my driver’s license?
C – I’m super sad this happened to me.
C – I hate being the youngest because Caitlin and JohnPaul can go out anytime they want and I’m stuck in my life.
Corey does not know what year it is, month, season, day/date. In some ways she’s like Rip Van Winkle. She went to sleep and when she woke up the world was different. She’s lost many years and yet sometimes she can recall long term memories. Often it’s because she remembers hearing the story not necessarily the actual event. Yet, in the same day she can recite a conversation that happened within the past 24-48 hours. When you ask her who the President is, her answer is Bush. The year 2026. She looks at us with those big blue eyes, palm up with a cautious shrug wondering if her guess was accurate? When the correct answer is revealed she retreats feeling the inadequacy of ‘her stupid brain’. Reassurance is not always comforting. Reviewing her achievements is not helpful either because she doesn’t remember what she did, where she started or how long it’s taken to this point. When she views her videos, she does not recognize herself therefore can not relate to the ‘girl in that movie’.
Meeting with Dr. A has been a great help. Corey has been communicating at a much better. Dr. A wants to begin working with her on some cognitive memory strategies too.
This month she’s also met with a new seizure specialist. We have been concerned there has been an slight increase in focal seizures. Not uncommon as it coincides with healing and cognitive growth. Seizures sometimes are sparked by the regeneration of new connections.
She has also started a new sleep medication which is helping somewhat but she will also be participating in a sleep study next month to monitor not only sleep pattern but possibly nocturnal seizures.
Insurance has been rearing it’s ugly head again. Our Bryn Mawr team is submitted clinical information today to be reviewed tomorrow. This is where your prayers need to be focused. Corey is down to 4 hours/week for professional therapy. If we lose this, it’s up to us 100%. Quite frankly, I’m not sure how we’re going to do it. My shoulder is getting stronger but I’m very nervous about my lack of training to manage her therapy full-time. I know I’ve felt like this before and always pulled it off but this time I’m concerned we might not pull this one off and if we do it’s going to be scrutinized and a tenuous approval.
Please pray for Corey’s left side, her memory, her emotional acceptance and temperament balance, her growth towards independence, her self confidence, her willingness, her motivation and determination.
We do have a prayer of thanks and gratitude to add. Tomorrow Caitlin is graduating with a Bachelor of Science in Photography. She took a year and half off after the accident but re-enrolled, worked year round and completed her course of study with honors. We are very proud of her tenacity, courage and fortitude. In case you have not seen her senior project, the following link will demonstrate her talent and dedication to her sister.
Thank you all for your continued love and friendship. We truly could not be where we are today without your support, xoxo
Corey Beattie in her own words