We had our monthly Clinic Visit at LPCH this morning. It's crazy to think that I had Akemi 4 weeks ago. Last month we weren't sure if I was having contractions or if it was going to be a false alarm. We all know how that turned out. :)
As you would expect with a new baby our life has been full of adjustments and new routines. Keira loves being a big sister and is so sweet to Akemi. She likes helping and often asks if she can "pet" her little sister. However, adding a new member to the V Clan also means less 1:1 time for Keira and we have been working hard to keep her in her routine as much as possible so that we can distinguish between possible OMS behavior symptoms or just 2 1/2 year old behavior on steroids.
Behavior is always the hardest aspect of all the OMS symptoms to figure out but we have noticed that when Keira gets upset her tantrums last way longer than we think they should and they are pretty intense. She has a really hard time calming herself down. Thankfully I was able to get an appointment with her psychologist before she goes on maternity leave and I hope talking with her will help give us some new strategies and reassurance that this too falls in the normal range. We will see. Luckily with any little kiddo, as soon as the drama is over, she is back to her sweet self and is ready to move on. :)
After much discussion with the doctors, we're staying the course with the increased prednisone for another month. Since the hand tremors went away, the two areas we have been most concerned with are behavior and her gross motor (it still seems like she falls more frequently than other kids her age). The doctors shared that this intense behavior/longer tantrums happens with other children battling cancer who are on steroids so it is very likely not OMS but just K's body trying to deal with the medication.
As far as the falling is concerned it is so hard to tell. During my mom's recent visit she said, "Keira is like a bull in a china shop" and it's so true! Keira moves quickly and runs into things/trips on toys. Most of the time we feel like she is just not paying attention to her surroundings but sometimes it seems like she will take a fall for no apparent reason. We've really been working on using our "walking feet" but such an energetic little person forgets that a lot. :)
For the next few months we are going to start more frequent check-ins with physical therapy. This will be a great way to monitor her gross motor skills a little more closely. It will be nice to have someone else look at her movements again to see if there is anything "off". Of course we are hoping that our little "bull" is still learning how to navigate her surroundings but with OMS you can't take any chances that the disease is actively attacking her brain.
Next steps... If all stays the same we will try to once again wean the prednisone without adding any other medications. We have a few other options but all felt like giving it one more shot without anything else made the most sense and would have the least long term side effects, but there is always plan b, plan c and plan d.
As always thanks for all the love and positive thoughts