Naveen, Keira and I headed to LPCH this morning for her monthly Clinic Visit. We figured it would be a longer visit since we also had an appointment with Keira's new Neruo-Oncologist, Dr. Campen, so Akemi spent the morning with Susanna, Oriana and Grayson. Susanna is going to be taking care of Akemi and her little friend, Cyrus, next school year so this was good practice for both Akemi and Susanna!
Naveen and I were a little worried about what the doctors would say today since K came down with a cough/runny nose this week. She had a rough night Thursday since her nose was so stuffy and it was hard for her to get comfortable enough to sleep. Last time she was sick we were admitted to the Day Hospital for lots of tests which included a poke and the dreaded nose swab. K promised to be brave if she had to have the swab but we were all hoping she wouldn't need it.
Despite the cough, Dr. Effinger and Dr. Twist thought Keira looked great. Thankfully, they didn't think Keira needed any additional tests with her cough, but did give us a prescription for another steroid if she doesn't start to improve in the next few days. We're hopeful we won't need to use it this time. Everyone also noticed that Keira's cheeks are beginning to slim down from the steroid wean.. she's looking so grown up as a 3 year old!
Keira loves cutting with her scissors and is getting pretty good at staying on the lines. She wanted to cut out a E, for Dr. Effinger and the doctor was quite impressed with her fine motor skills. :)
We've also very happy with the progress Keira has made at Physical Therapy over the past two months. Her static balance is better. She is still super wiggly and needs reminders to slow down but overall she seems to have a better awareness of her space. We're going to start spreading out her PT check-in's to 1x per month just so we can keep an eye on her as we continue weaning steroids.
We all agree that she is ready for the next reduction in her steroids, however with the cough, we also agree it would be better to wait another week or two and start the next wean when her body is recovered and healthy. Healthy, happy thoughts that our sweet girl gets over this cough and handles the next steroid reduction. We will keep you posted!
