Today marked our 6th Clinic Visit with Dr. Effinger. Keira continues to amaze us all at how well she is responding to treatment and her determination to do all the things a kiddo her age should be doing at 22 months.
Starting tomorrow we will again taper her daily steroid. Dr. Effinger and Dr. Twist are still determining if we will cut the daily dose in half, only giving K 1ml twice daily or if we should give 2ml twice daily and then the following day only give the 2ml one time. We will find out the verdict tomorrow and keep our fingers crossed that K's body is ready for this medication reduction. It would be so good for her body to have a break from the steroids so that she can start growing taller again, but as we discovered in January the weaning process is not to be taken lightly. Positive thoughts!!
Another big change after this 6 month medication milestone is that March is the last month Keira will be receiving Cytoxin. Starting in April, K will only receive IVIg and even then only every other month. This means that in May we will only be going to LPCH for her Clinic Visit. After being married to Naveen for almost 5 years, I think that his superstitious nature is starting to rub off on me as I feel like we are getting too far ahead of ourselves, but Dr. Effinger is confident that K will do fine and if we see any flare ups we will tweak her steroid dosage to keep things under control. Again positive thoughts!!
The next follow up MRI is scheduled for Monday, March 28th. We will also be scheduling a follow up with the Neuro-Pshychologist to revisit where K is at developmentally. As you might recall, we did a baseline for this back in October before Keira's very first treatment. It should be interesting to see how she has grown.
Looking back, it is crazy that it has already been 6 months since our life turned up-side down. I am not going to lie - it has been really hard on us - but with the love and support of all of you we will stay strong and continue to strive for a balanced life where the fear of an OMS flare up does not prevent us from enjoying all the good moments together. :)