We had to put some of Keira's appointments on hold while we were dealing with my mom's stay in the ICU and now that she is stable we are back in CA for a couple of weeks. Keira has actually been happy to play with all her LPCH friends.
We spent Tuesday morning at ophthalmology. Unfortunately, you can not see signs of opsoclonus unless her eyes are actually dancing (and we've never seen this as a sign of OMS with K), but long term steroid use can cause glaucoma. It was good to hear that Keira's eyes are healthy. We will go back for another check-up in 6 months.
Keira and Brown Bear after our appointment. K loved her new glasses
and was proudly sporting her stickers (BB got a sticker for being a good listener too!)
Tuesday evening we had PT with Jackie. We've been concerned that K's static balance is off again. The girl never sits still and for the last 2 weeks has been chasing her 5 year old cousin Aiden all over the place. ANYTHING Aiden does, Keira tries to do without hesitation. In some ways it's great, but it is also stressful for us when she falls because it's hard to determine what is OMS and what is her just being an active, impulsive kiddos. Jackie felt that Keira looked as good or better than her last visit just over a month ago so that was re-assuring for us to hear and is exactly why we like for someone else to look at her every few weeks.
Today K and I went up to LPCH for Clinic with Dr. Effinger. When Dr. E came into the room Keira ran over to her and gave her the longest, sweetest hug. It was like she was seeing her friend after a long time. :) We talked a lot about what we've been seeing with Keira in the last month. There have definitely been some ebbs and flows with her sleep, behavior, motor skills and speech. Most things have come and gone but we are feeling that something is a bit off with Keira's articulation. We're due to start her next steroid wean, but are going to hold off for another few days until after we have our appointment with Speech. I know that we are all hoping it's just a phase and that she's being silly and making lots of funny noises like her baby sister but you can never be too careful with OMS. We have to take everything seriously since the repercussions are very serious.
Thanks for reading this novel and for sending happy thoughts to our little girl!