Hi Everyone,
I know many of you have been worried about us. Thank you for your texts emails and messages. I didn’t have nursing due to the weather. As you can imagine I didn’t have a minute spare. In fact, I was awake 40 out of 48 hours over the weekend. In addition; our family is very “normal”. Caitlin called home because she was not feeling well. I went into Philly yesterday to pick her up to see Dr. B today. I have been nursing both my girls! (JohnPaul hasn’t called yet…)
This weekend was hard for Corey. She is one of the strongest individuals I know! Despite the tough days, she pushes through. We continue to have issues with her mouth pain and her shooting pain from muscle spasms. Her temperament can go from content and relaxed to full rage in a matter of seconds. I don’t wander too far from her visual field for several reasons; 1. If I’m next to her while she’s working with the therapists and her pain flares up, I will take the physical abuse of the tantrum and my team won’t get hurt. 2. She calms down instantly if she can see me and hear me.
When Corey is on the matte, she literally breathes through the pain as well as counts down with her right hand to work through the stretches. Good news; She is developing some consistency in trying to express her pain which is a big improvement this week.
Corey is making progress in her therapies. She was in her standing frame this weekend; her new record ~ 8.5 minutes. Today she increased her time for sitting at the edge of the matte to 6 minutes. Unfortunately, Corey stressed her right ankle as she was standing at the walker. Although she didn’t call out in pain, her ankle was significantly swollen for most of the evening. We will watch this carefully. Good news, this Thursday we will be going back to the Orthopedic Surgeon’s office for her yearly follow up. We will have her shoulders and legs examined. The surgeon hasn’t seen Corey since her follow up at 5 months when we were still in Bryn Mawr; won’t he be amazed at her progress!
We also confirmed an appointment with a Neuro Ophthalmologist. It’s taken 3 months to try to get an appointment and it’s finally scheduled for December! We will be going to Wills Eye. A Neuro Ophthalmologist will test Corey to check several unknowns; Loss of Visual Field (ability to see side to side), Visual Spatial Loss (including depth perception), Vertigo, Double Vision, Eye Strain and difficulty reading (often leading to fatigue and problems focusing) as well as Impaired Visual Memory (recognizing letters, words, etc). The answers to these tests will help Corey with Speech and her Cognitive Therapies. At the moment, Corey is consistently accurate with auditory cues (if you spell a word she can speak it and/or say the word she can write it with perfect spelling). However, she has not been able to answer most of the visual cues (pictures and word flash cards) with any accuracy. So many questions; so much to learn. I feel like our questions have questions!
One area that we don’t question is her culinary therapy…Monday is cooking in Corey’s Kitchen! Today’s entrée; Chicken with a Dijon Cream sauce. I filleted and precooked the chicken breasts. Corey minced the spices, measured, scooped, whisked and poured the sauce. Chicken Broth, Cream Cheese, Dijon Mustard, Parsley, Basil and Chives. Bake for 30 minutes and serve with rice pilaf and veggies. We had enough for 10 dinners for the church! This is a delicious dish!
Tonight the girls and I enjoyed The Sing Off. Corey loves it! She uses her right hand to conduct, sign the lyrics and she even tries to sing with the a cappella groups. It was a fun night after a very long but productive day.
Corey I’m so proud of you. What I especially love are your good night hugs and telling me “I love you”. My favorite part of the day is looking at your smile. You are doing a great job kiddo! Rest well tonight; I know tomorrow you’ll be pushing at 110% again.
Happy dreams, xoxo