MAOT Spring Conference
What a great turnout and day it was at the MAOT Spring Conference in Springfield, MA. My presentation What Matters Most: Improving Acute Stroke Care Through Patient-Centered Communication, Early Rehabilitation and Advocacy was well received. My daughter, Melanie was able to be in attendance and assist me with photography and tech details. The best part of the day was when the audience erupted into applause and cheers when I played the video of Shawn's progress, ending with him being able to shift his Mustang and drive again. It brought tears of joy and I had to pause a moment to let that moment sink in. Looking forward to upcoming speaking engagements to continue to spread awareness of how medical trauma can impact care and to remind all clinicians to keep patients' most important needs at the center of their care.
RESTORE Stroke Study Updates
Shawn is entering his sixth week of three times a week in person OT sessions. He has enjoyed everything from golf, badminton, frisbee, card games, sanding cabinets, basketball, crafts, puzzles, cleaning, folding laundry - anything you can think of to force the use of his right hand and arm and encourage bilateral integration. His OT, Adrien has been wonderful with him and he is enjoying each 75 minute session. The car trips via the car service have been a time of quiet reflection and naps - a little
break from the day to day grind with the dogs. At the end of next week, he will be given an iPad to do the therapy virtually for 3 more months. I know, I know. . .the big question. . .is the DBS working? Well, he hasn't noticed a significant difference but the therapy certainly has improved his arm use at home for functional tasks. He could be in the control group, but he won't know that until the end of the three months of virtual therapy. And if he is, he and Adrien will get another five months together! Stay tuned! Click here to see one of his OT sessions in action! @Shawnsstrokerecovery
And for other Health Updates
Life is certainly never boring. Shawn has been feeling pretty good the last year or so, but his bloodwork is still causing some concerns. His iron levels continue to run low (ferritin of 7!) with no direct cause that can be found. He continues to need iron infusions which just adds to his busy schedule. But he also has very high eosinophils. They have been high and climbing higher over the last 14 months or so. The hematologist who has been prescribing the infusions has been keeping an eye on the eosinophils as well. Eosinophils are something the body makes in reaction to an allergen of some kind. Shawn has never had allergies like the rest of us do. I have high eosinophils due to eosinophilic esophagitis (EoE) and have always have elevated levels. Kylie too. But not nearly as high as his have been (and he never had elevated levels before when he was in and out of the hospital with his CVS episodes). So this is new. He also has had unusual pockets of facial swelling that comes and goes and has needed steroids to calm it down. The hematologist ordered additional testing included an IgE test (Immunoglobulin E) That was also sky high and also usually indicates an allergic reaction to something. Good news is, the flow cytometry testing that was ordered was negative for the type of blood cancers that could cause these elevated levels. Tryptase was also normal. The NP called him a medical mystery. Yeah, no kidding! She is now sending him to Dana Farber Cancer Institute to a benign hematologist to do further testing to determine what could be causing these elevated levels. There is a condition called HES (Hypereosinophilic Syndrome) which basically is high eosinophils with no known cause. Either way, they will most likely have to do some treatment to bring the levels down as levels this high can cause organ damage if left untreated. Dana Farber called me an hour after I got off the phone with the NP, so they are moving fast at getting him in and scheduled. Wish us luck!
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