Today was Keira's last scheduled IVIg treatment. It is amazing to think that her original diagnosis was just 1 year ago. Keira's bravery and determination continue to inspire us. We feel so lucky to have a little girl with such spunk who has tolerated such intense medication and continues to thrive in so many ways.
We arrived at LPCH at 7am to get checked in and ready for her lumbar puncture (LP). Part of the follow up for the protocol she has been on is to collect spinal fluid as a comparison to the spinal fluid from last fall during her initial diagnosis. This meant no food after midnight and no liquids this morning. K was in good spirits and kept us all entertained while we waited. She was extra cuddly after her versed as we waited for the anesthesiologist . When it was finally time for anestesia, she was a pro, handling the mask without an issue. Not sure I would do so well!
We thought that it would be easier on K if we had them draw her labs and put in her IV for the IVIg while she was under anestesia. The nurse did have trouble finding a good vein and had to poke her 4 times! We were happy that she had no memory of that but she did wake up very upset that she had something uncomfortable in her arm (not that you can blame her!) It took us a long time to settle her down. We're not sure if it was the versed, anestesia, lack of control or a combination that caused Keira to be so upset and we will probably never know, but once we were able to stabilize her arm she seemed comfortable and we had an enjoyable day.
The next step will be to continue to wean Keira from the prednisone. Our plan is to again reduce the steroids at the end of this week. She has been on a slightly lower dose for almost 4 weeks with no major signs or symptoms of OMS. It could take up to another year to get her completely off the steroids but we would much rather go very slowly without any relapses than to try to hurry the process. If OMS has taught us anything it is to just take things one day at a time. :)
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