March 30, 2012


It's hard to believe that sweet baby almost gave her brother a black eye! She was trying to feed him his bottle.

It feels like I am juggling--more so than usual. Bertrand is doing well and we want to take advantage of his receptiveness. Of course, this isn't straightforward. Here are some of the items on my mind:
  • Valium Protocol - The epileptologist finally called me back! She had not forgotten to call in Bertrand's prescription. She had just forgotten to call to tell me she had changed her mind. She wants Bertrand to commence the valium protocol inpatient. I am scrambling to schedule that next week during his spring break.
  • Aqua-therapy - Miss A, Bertrand's home physical therapist, is studying aqua-therapy. And Bertrand starts it with her today! (We've tried for years to get Bertrand in with a local aqua-therapist without luck.) I am scrambling to get a +1 membership to our local pool.
  • Power Wheelchair Training - Also with Miss A, Bertrand has been making lots of progress with the practice power wheelchair at Shriners. We are going to touch base with the therapist in charge of chair evals at Shriners on Monday. Scrambling to get last minute practice in.
  • TAOS - On Monday morning Bertrand will be fitted with his TAOS! Fingers crossed. I've watched the parent information video about 10 times now. I think I could put Bertrand in it in my sleep.
  • Medical Care Meeting - In about 2 weeks, I will be meeting with Bertrand's pediatrician to talk about the quality and management of his medical care. I'll probably share my list of concerns before then.
  • Saying Goodbye - Yesterday, I received the sad and unexpected message that Bertrand's fabulous mobility therapist was being transferred. This seems thoughtless and potentially damaging on the part of the Salt Lake School District. Bertrand loves his Miss Liz. It takes a looong time to earn Bertrand's love. There is almost no chance that with only 2 months left in the school year he will adapt to another person. Or that another person will learn how to best communicate and work with him. Losing Miss Liz could arrest not only Bertrand's progress but that of the other kids in his class. I hope that the district sees it's folly and let's us keep Miss Liz!
So there you have it. Lots of scrambling and some worrying (hopefully unnecessarily) on my part. Wish us luck! And you better believe there will be some aqua-therapy pictures here tomorrow. :)


  1. I love Betrand so much. Thank you for your support and the wonderful gift. I will never forget his amazing smile and laugh. I hold hope that they will some how change their minds. Love always Miss Liz.

  2. Aqua-therapy was also suggested for Iara when she was around 1 year-old. She could not do it because of her intractable epilepsy and motor problems. We hope the best for Bertrand, he will do perfect!!!

  3. Liz - Thank you! We hope they change their minds! But hope everything goes well for you if they don't. We love you!

    Javier - Thank you! We wish you luck in finding a therapist willing to try with Iara. Love to you all! :)