DAY 1 – August 3rd
Everett’s first day at Duke was certainly busy! There were labs, an echocardiogram, an electrocardiogram, X-rays, a pulmonary function test, and two neurological assessments. Everett was a total champ and he’s already charming the staff with his squeals of delight and gap-toothed grin!
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DAY 2 – August 4th
Day 2 and more tests! This time, kidney function tests and hearing tests. Everett and Tom and Haylee got a great tour of the 5200 (the Pediatric Bone Marrow Transplant Unit). But the best part of the day was meeting fellow PMD warrior, Gus, and his parents!
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DAY 3 – August 5th
The all-important neurocognitive evaluation happened on Day 3, and it went better than expected! Everett’s language and social/behavioral skills are all right on track with his age!
While he has significant delays in gross and fine motor skills, they are in line with what is expected for a (nearly) 1 year old with PMD, and the staff were impressed with how quickly he manages to get around.
Most importantly, Everett’s strong-will and determined attitude are great indicators he will be likely to bounce back quickly posttransplant without completely losing all the skills he’s worked so hard to gain.
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DAY 4 – August 6th
More great news on Day 4 at the pediatric Neuro-Ophthalmology Department here at Duke…Everett’s optic nerves look great, and so do those smiles!
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DAY 5 – August 7th
Day 5 was a hard one. Two little arms got poked for blood again for 11 (!!!) different vials of blood for testing. Our happy little guy still managed to smile through the tears!
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DAY 6 – August 10th
Day 10 was a painful day at Duke. There were tears while Everett went through nerve conduction testing and more labwork draws to make up for everything they weren’t able to collect last week. The tears don’t last too long when you’re being cuddled, though!
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DAY 6 – August 10th
Day 10 was a painful day at Duke. There were tears while Everett went through nerve conduction testing and more labwork draws to make up for everything they weren’t able to collect last week. The tears don’t last too long when you’re being cuddled, though!
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DAY 8 – August 12th
Everett has gotten wise and knows what’s in store when he arrives at Duke now…
Fortunately for our little warrior, all of today’s tests had to be completed under sedation. There was a CT scan; an EEG; a Visual Evoked Potential (VEP) test, which measured the electrical activity in Everett’s vision system; and a brainstem auditory evoked response (BAER) test, which detected electrical activity in Everett’s cochlea and his brain’s auditory pathways. Just one more day of preliminary tests, and Everett will be all done!
