April 16, 2012

The State of Bertrand's Care

Today, Matthew and I met with Bertrand's wonderful pediatrician to discuss the state of his care. She was 100% on the same page as us, and is now organizing a meeting with all of Bertrand's providers through the palliative care team.

While the neurology department issues were discussed at length (and are to be continued...) we discussed all aspects of Bertrand's care including: an impending trip to Duke University for study results, functional electrical stimulation (FES), and potty training.

Upon examination, his pediatrician remarked on Bertrand's improved attention span and muscle tone. She also ordered labs to be drawn when Bertrand goes in for his dental and eye exams this month July.

We were all very pleased with the outcome of this visit, with the exception of Victoria* who received her 12 month vaccinations. :)


*As usual, Victoria stole the show by wearing fairy wings, running through the hospital, smiling and waving at everyone. She remains 50th percentile for head circumference, only 10th percentile for height, 15th percentile for weight, and well ahead of her peers developmentally in every aspect. Whew! I doubt we'll ever stop worrying, but at least she tries to make it on us. :)


  1. Love the palliative care team. I wish I had found out about them sooner.

  2. Barbara TherExtrasApril 16, 2012 at 8:25 PM

    Very happy to read a family I care about is receiving good care!

  3. Thank you, Candace & Barbara! We hope that the palliative care team maximizes Bertrand's care and comfort overall, but starting with the neurology department. Basically, moving mountains--that's not a lot to ask, right? ;)

  4. The potty training makes me so happy! Not because it's "about time" or anything like that, but because I remember our early correspondence, in which you told me that Bertrand hadn't even been expected to make it to his third birthday. It just seems to make this goal so poignant for me.