We did not mean to go into hibernation the last 3 weeks nor have we been sitting around eating bonbon’s.
On a personal note; I was very sick with what I thought was the flu. Turns out it was a severe kidney infection and dehydration. I had a fever for 8 days and it took me another week to get my strength and stamina back. Thank goodness for Caitlin and her availability since graduation. She drove Corey to/from doctor appointments, therapies and managed the household duties including nursing me. I also want to thank Jackie and my local girlfriends for helping out too. It took a village to take care of me!
Corey’s update: We have many positives to report.
1. Headache specialist – We waited 6 months but finally met a Headache specialist in Virginia. Dr. Jessica gave her a thorough exam. Corey’s headaches are a result of her injury however, they are also coupled with the fluctuation in barometric pressure sensed by the VP shunt. There is not much we can do to help her. The switch in one of her medications has helped alleviate the frequency of the severe migraines because it’s a broad spectrum formula that is also used for chronic pain. Corey’s daily headaches have remained at her baseline of 4 out of 10. We will be weaning one of her nightly meds and adding an ‘as needed’ migraine medication for the extreme headaches that still occur with the change in weather. As usual, we need to monitor her for seizures as we make the changes. The cocktail mix continues to be a delicate and critical balance.
2. Orthopedic specialist – Dr. R was pleased to see Corey walk into his office with her forearm cane but is not thrilled her left foot is not advancing as he hoped it would in the last year. He added orthotics to her left brace and right sneaker. The insert is not typically put in a brace but ‘typical Corey’, she’s surprised the therapists and doctors that it can in fact improve foot pain when inserted in the brace. Her therapists are now suggesting it to other patients with similar issues. The relief she feels along with a recent round of botox shots has helped lessen her foot and knee pain causing increased participation in several new therapy exercises.
3 & 4. Rehab & her Neuro-Behavioral Psychologist – I last reported we were approved for therapy and came to find out, coverage will continue until June 30th.
One of the therapists greatest concerns in helping Corey advance physically has been her emotional/behavioral limitations. Her anxiety/fear of getting better and being independent, stranger anxiety and separation anxiety from me has driven the ‘scaled back’ exercise regimen the team has been able to push because of Corey’s limited cooperation to try new exercises. They have been unable to ‘push’ her. Corey’s weekly work with Dr. A has improved her participation tremendously. Corey has become an exercise-aholic; the athlete is back.
There have been several days Natalie and Anne were either on vacation or committed to other sessions. Corey was assigned to substitute therapists she had never met before. She made each transition very well and worked a full session without one outburst. This is a tremendous improvement. She has increased her standing and stretching at the parallel bars, walking longer distances pushing and steering a shopping cart (instead of a walker), she is using weights for strength training, and last week another first. Sitting on the matte, she placed a small beach ball between her knees, reached forward with her arms extended as she stood upright and then lowered herself back down…her first attempt at doing squats; She did 10!
Dr. A also achieved a first. Last week Corey agreed to work with her alone for their full session as Caitlin and I waited in the waiting room. The ladies played ‘brain games’. Dr. A was testing Corey’s concentration levels. She was happy to report Corey was “on fire” for 15 minutes before she fatigued. They took a little break and then Dr. A tried a new exercise – Mazes. She wanted to see what Corey would do with the maze without instruction or guidance. She actually expected her to get frustrated and give up. At first, Corey started and hit the maze wall, paused and rerouted her direction. Dr. A glanced away looking at the next activity not focusing direct attention to Corey’s activity. When she looked back she expected Corey had given up because she was quietly waiting. Looking at the page, she discovered Corey completed the puzzle and was waiting patiently for the next assignment.
5. Retail therapy – we have noticed a marked improvement in Corey’s attention, reading and analytical decoding skills. Many of you remember our introduction to her reading using clothing magazines; we call it ‘retail therapy’. Corey would look at the pictures and turn down the corners of the page marking that there was an item she liked on that page. She graduated to using a pen to circle the item she liked. In the last 3 weeks, she is now locating the letter associated to the item, finds the written description, item number, price and page number and transposes the information to a notebook to remind her of her favorite selections.
6. Sleep – Corey will be participating in a sleep study at the end of the month. It will monitor her sleep patterns and seizure activity. Corey has improved overall on the length of sleep cycles, however, she is still waking several times a night calling out and is always agitated and sometimes disoriented. Her days have been better and she’s been more cooperative but the nights are still a challenge.
Corey has been more alert, is becoming much more aware and we’ve seen an increase in short term memory; but she still has a very long way to go for true memory function. Just this morning she asked me why her left arm doesn’t work right; “what even happened to me”? When those questions are asked, it is a clear reminder we’re still on this very long road of rediscovery. Our reality check reminds us to look at the highlights, the little improvements we see that are truly the biggest daily achievements. Those singular moments keep us moving forward, working harder and fuel our mantra “Never Give Up and Never Give In…It’s a Matter of Time”. xoxo