Keira continues to inspire us every day, and it is amazing that she seems to be handling the medication better each month. It is almost as if she now knows what to expect. Thursday was still the hardest day for her, but Mrs. Louise said that she was much better than last month. A little more tired and clingy but no tears!
Most of the month was uneventful in terms of Keira's OMS. Naveen did notice a slight unsteadiness in her hand about a week after our last prednisone wean. It completely caught us off guard as we weren't expecting any symptoms with her being on two steroids. Mrs. Louise also observed something similar that same day at school so we quickly made a follow-up appointment with Keira's Occupational Therapist, Eiri. I have to say that it's so wonderful to have teachers that care so much about Keira's condition and pay attention to the little things. I know it comes with added stress for them, but we (our doctors included) are very appreciative for the feedback.
Eiri was able to get us in later that week, and although we were watching K like a hawk, we never saw the unsteadiness again. Eiri thought Keira looked great and, in fact, felt that her skills were better since she had seen her the month before. Go figure.
We are also a little suspect that Keira's articulation is off the week before her Dex Pulse. It's so hard to be certain but overall she's a bit more difficult to understand (we find ourselves asking her to repeat herself) and then after the Dex it seems like it gets better. We've set up a couple of speech appointments with Maria next month a week before the Dex and a week after to see if her trained ear can help us figure out what is going on. We will see how our experiment goes. :)
At our Clinic appointment on Wednesday, Dr. Effinger/Dr. Twist felt that Keira continues to look good so we are going down on the prednisone again. Keira is now on 3ml every other day.... prayers and positive thoughts that her little body is ready for this lower dose. This has been the threshold that we have not been able to get past. The last two times we've gotten to this dosage we've seen symptoms return. We're hopeful that with the Dex this will not be the case this time.
Thank you for your continued love and support. Also, big thanks to everyone who donated to Pablove Across America. We are thrilled to be almost halfway to our goal of raising enough money for a 50K research grant. We will continue our fundraising this winter with a variety of smaller events and plan to hold our One More Step hike this spring.
If you had issues with the online donation not working or haven't had the chance to donate yet, Naveen's fundraising page will be active for another week or two: http://stayclassy.org/naveen
Our Sunshine!