On Friday, March 23rd the V's headed to LPCH for our monthly check-in with Dr. Effinger.
Just a little recap since my last update.
Keira has been going to Physical Therapy for the past month where we have been focusing a lot of her balance and overall spacial awareness. We are trying to teach Keira to watch where she is walking. Jackie has been working with her a lot on making obstacle courses (which Keira loves) and playing lots of games to strengthen Keira's core. I do think that it is helping. Keira loves doing things that she is good at and since the balance stuff is a bit of a struggle she usually chooses other activities at home and at the park. The PT sessions are great for me since Jackie gives me lots of ideas of ways to sneak in the balance without Keira realizing it!
We also went in for a Speech Evaluation to check Keira's articulation. Our little chatterbox can be a bit difficult to understand, especially if the conversation is out of context. We usually know what it is she is talking about, but sometime it is hard for others to understand her very vivid imagination. :) Maria felt that Keira is still in the normal range and pointed out several areas of growth since she last saw her in October. She also pointed out that Keira's errors are consistent which is reassuring. If it was a cognitive processing issue resulting from damage to the cerebellum, the errors would be more random. However, Maria does understand our concerns and was very open to seeing Keira on a less frequent basis to work on slowing down her speech and articulation sounds. We're so fortunate to be working with individuals that understand the unique situation surrounding OMS.
Dr. Effinger and Dr. Twist are happy with Keira's ability to bounce back to her baseline since the flare up in December. The increased steroids have done what they were suppose to do (which also includes some weight gain - the cheeks are back!) Now that things have stabilized, it's time to start the slow wean again. We will reduce Keira's every other day steroid from 4ml to 3.37ml. We are hopeful that K's body is ready... but of course we will be watching her like a hawk and overanalyzing everything. :)
Just a quick little story to make you smile - Keira and I picked out some cute little purple flowering plants to celebrate the first day of spring. We added a little construction paper bumblebee to each plant from a project Keira had done at school that week. When it was time to pass out the plants, Keira was super specific about who got which bee. She did not want Dr. Effinger getting the "grumpy" bumblebee. I had no idea that each bumblebee had it's own personality and was curious to see who she would give the "grumpy" bee to... Kate, her social worker, or Dr. Twist? Turns out Dr. Twist got the honors. Too funny!
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