Thanks again for all the love, support and prayers this week. We know that it helps us stay strong and keep a positive attitude.
We were able to see Dr. Twist this afternoon and based on our observations it appears that Keira's OMA has flared up. We can not know for sure if this is due to the fact that we started giving her steroids every other day or that she came down with a cold, but the decision is to put her back on the daily dosage and monitor her ataxia.
You may wonder why not "wait and see" if she gets better now that the cold is going away. Unfortunately, what we know about OMA is that once these bad antibodies are created they will not just go away without some intervention. We will need to do something to help find that balance in Keira's body again. Dr. Twist said to think of it as a teeter totter. We want just the right amount of medication to suppress the antibodies so that Keira is symptom free and able to function normally.
While this may not be the best news, Keira has been on the best possible trend for the protocol we are following. We truly are thankful for how well she has responded to the medications and how quickly she regained her motor and speech skills. Keira is considered developmentally appropriate in all areas for a child who is 21 months old.
When you take a step back and look at the situation objectively, she truly is a little rock star, as this is only the fourth month of treatment and was the second time we were able to reduced her steroids. Many children in the fourth month are still on a much heavier dosage of steroids and still working to overcome some of the set backs from OMA.
We will continue to do all we can to help make sure our little girl stays healthy and the only way to do that is to take it one day at a time.