Corey slept through the night. When she woke she was still visibly exhausted so we let her sleep in until the last moment before Brittany and Diane’s morning therapy sessions. Corey’s swelling and paralysis of the left side of her face was gone thank goodness. She seemed alert and happy as she began to “wake up”. Brittany, school OT, and Diane, ST, both reported good sessions. Corey was a little more subdued than normal but still interactive and responsive.
After her morning therapy we headed out to the ENT specialist. The Dr. sprayed the interior of Corey’s nose to numb it and then placed a lit scope through her nose and down her throat. I was amazed at how cooperative Corey was. She held her head still but was calling out, “OW” repeatedly. She didn’t try to stop the Dr’s procedure either. He saw some granulation on the left vocal chord. He believes that is from the increased reflux we’ve seen. Although he can not confirm that is the reason Corey has recently refused to swallow, he believes it could be a strong indicator. If she is having the reflux and it’s burning the back of her throat, she may be associating the pain of the heartburn with the pain of swallowing. He is increasing her Nexium dosage for the next 4 weeks. If things don’t improve during that time frame he’d like us to follow up with our Gastroenterologist. That Dr. will then decide if it is prudent to have an endoscopy to make sure there are no issues further down the esophagus.
We headed up to Bryn Mawr Rehab for our next appointment with Dr. Long. He was sad to hear that Corey had a seizure. We discussed the details and also looked at her blood levels. She is within normal therapeutic range for the seizure medications so we’ve decided to increase the Tegretol back to where she was. He is going to keep the Topamax at the lowest dosage as that has helped decrease her migraines. If this works, we might have found the right “cocktail” mix to keep future seizures at bay and migraines under control. Keep your fingers crossed.
Dr. Long was shocked to see Corey speak. In fact, she literally asked him “How are you”? His response was, ‘much better now that I hear your voice for the first time’!
She shared some other words and phrases that she’s been trying to perfect and responded appropriately to his questions with verbal yes and no’s. In July she was using sign language to communicate with him. In August she was writing on her white board. Today she answered his questions herself!
We also discussed her braces and the possibility of orthodic inserts known as DAFO’s and AFO’s. We just received the name of a doctor by our home that could do the nerve blocks. Dr. Long would like us to do the blocks, serial casting with Univ. of DE and then if Corey increases her range of flexibility than we can look at the orthodics. He has a concern that the blocks and casting may not improve her range and she might need surgery to lengthen the tendons…but let’s put that off until we try everything else.
As Dr. Long was testing the range of motion on her feet, he asked her to wiggle her toes on the left foot. Not only did she wiggle her toes, begin to rotate her ankle left to right, for the first time that I’d seen she lifted her left leg from the knee and raised her foot off the foot stand of the wheelchair! I told Dr. Long that we both witnessed a first and he gave Corey a high five. She was all smiles. (Knowing Corey…I think she needed to prove something to him!)
I couldn’t help myself and had to ask Dr. Long…so, what do you think of Corey’s progress in 14 weeks? “It’s very impressive”! (Way to go Corey Girl)
We had some time to run up to the Maple Unit and see some of her nurses and therapists. Natalie, PT; Jessica, ST; and several of her favorite nurses and techs. Everyone was amazed at how great she looks! They all commented on how long her hair grew; how bright her eyes and smile were and they were blown away when they came up to say hello and she raised her hand and “said” Hi!
Honey I’m glad you’re feeling better today. As the day progressed so did you. It was special to see your Bryn Mawr “fan club” greet you. You had a busy day and deserve a restful night’s sleep. Dr. Long signed off on our going into Philly to see ‘Team Care for Corey’ the night before the big race. It should be a great time! Happy dreams honey, xoxo