Hi Everyone,

I’m happy to say that Corey had a good day. That hasn’t been the case for the last four days! Since last Thursday, she’s been suffering from spasms in her legs, extreme mouth pain, she hasn’t been able to make it through several of her therapy sessions due to her fatigue, she hasn’t been interested in seeing any visitors and she has slept more in the last 4 days than she has in quite a while. I have been wondering if she’s depressed, is she healing or could it be a growth spurt? (it was a viable thought 15 years ago!)

For me, the last four days have been mentally and physically exhausting as well. Our nurse called out for the night shift and two of our nurses had to cut their day shift short. This puts me on duty almost around the clock.

The most difficult time of the day is the middle of the night. It’s natural to think that it’s quiet and serene. In our house it’s the noisiest most crowded time of day…at least it is in my mind. It often feels like a film montage that has no logical order; research, clinical studies, thoughts of past, present and future, concerns, instant replays, inspiration, plans, design, organizing thoughts, bills, medical bills, preparing for appeals and documenting progress reports. These are just some examples of what keeps me busy in addition to rolling Corey in bed every two hours as I listen to her breath when she sleeps to make sure she doesn’t aspirate.

One of my favorite quotes from Eleanor Roosevelt is; “Do one thing everyday that scares you”. When Corey has a bad run like she did this week, getting through everyday qualifies as my answer. My daily search to highlight her achievements gives me the strength I need to not only get through the day but often prepares me for the next 24 hours. When Corey has a string of difficult days my search is much more challenging. It’s the string of difficult days that force me to put my head down and do what needs to be done. They remind me to stop; breathe and be patient. They force me to refocus, look back at where we were and regain perspective as I recalculate the timeline. Just before doubt and worry begin to overcome my strength Corey has a day that hits them out of the park! I’m grateful that today was one of those days.

Gillian, PT, tested Corey for her six week evaluation test for insurance. She must be able to not only document functional improvement but continued improvement with NEW gains not just improvement of the current gains. She really pushed Corey to perform and Corey did not like it! Corey voiced her frustration but completed a full hour of what can be best described as agility testing. Sometimes Corey can not show a response to a command immediately. She needs time to process the command and then her brain needs time to send the signal for her body to respond. Part of today’s evaluation was to find the immediate responses and Corey was very frustrated when her responses couldn’t react on command. She was angry yet kept trying. At one point she had to kick a ball with her left foot (she has not achieved this movement yet). In her anger, she kicked the ball out of the living room using her right foot. We retrieved it and asked her to do it again. Then for the first time, it happened. She tapped the ball with the tip of her left sneaker! Gillian’s response, “if she can do it once, she can do it again”…after several trials and a few more retrievals she did it again! Refocus; 9 months ago this week we documented her first kicks with her right leg.

Diane, ST, is working to prepare Corey for her swallow study. Today Corey tried water, thickened apple juice and applesauce. All were mildly successful until we offered Peach Yogurt. That was a home run! I initially dip the spoon in the yogurt and the residue that clings to the spoon is the amount we introduce. With each subsequent taste, I add just a little bit more. Corey opens her mouth, closes her lips around the spoon, I pull the spoon out allowing her lips to capture the yogurt. She begins a chewing motion, tucks her chin to her chest and swallows repeatedly. When she’s finished she opens her mouth to show me it’s gone and says “Ah” so we can hear that it’s cleared from her throat. As she tasted the Peach flavor, her eyes lit up and she smiled as she chewed. We were able to give her 10 spoonfuls over a 30 minute period and she loved it. In fact, we now have the green light to introduce other types of flavors and consistencies to practice for the swallow study. With thanksgiving approaching we asked Corey if she’d like to try mashed potatoes and gravy. She smiled. When I asked her if she’d like candied yams, she literally called out in a high pitch clear voice, “YAMS”! Refocus; It was thanksgiving weekend last year that her Trach was removed.

Corey created Ragu Bolognese today in cooking class. Prior to our getting started, Brittany and Corey wash her hands. Corey showed another first. Brittany stated that they had to raise Corey’s sleeves. Corey pushed her left sleeve up with her right hand but then moved her left arm towards her right sleeve and extended her pointer finger to try to lift the right sleeve. Refocus; 9 months ago she could only flinch her right thumb and 1 month ago she successful lifted her left thumb for a double thumb up!

Until we can acquire adaptive cooking tools for Corey, Brittany, OT, created an amazing solution. A One Handed cutting board with 3 screws to skewer our vegetables and two PVC pieces strategically placed in the corner of the board to brace a vegetable to be cut on an angle. Corey also used a mortar and pestle to mince assorted spices; she measured each ingredient, chopped carrots and celery all with one hand.

“You gain strength, courage & confidence by every experience in which you really stop to look fear in the face. You must do the thing which you think you cannot do.”
— Eleanor Roosevelt

Corey how many times in a day do you feel like you cannot do what is asked of you? How many times do you try a new movement, and as you watch for the result, you surprise yourself when you achieve it. Would you like a realistic definition of perspective? Today would not have been possible if you refused to try everyday for the last 13 months. I’m so proud of you, xoxo