April 22nd, 2011. Day +42

Things are still going good here.  Charlotte has been quite hungry and thirsty.  Her new level of IV fluids is allowing her to drink a little more during the day.  So far she has had over 30 ounces of milk yesterday and today!  We have heard nothing from the clinic about her cyclosporine levels taken Tuesday so we are assuming they are good enough.  The urine sample was collected and brought to the Sun Prairie clinic yesterday.  We hope any tests will come out negative, but will probably not hear anything until Monday.  The home health nurses stopped by today to change her PICC line dressing and they also drew some blood to check her phosphorous and magnesium levels.  Those have been pretty low for the last several weeks (a common side effect of the chemo and cyclosporine), so they have been adding those to her IV fluids.  We heard back about those tonight and they continue to be low so they will still have some added to her IV fluids for the next week.

Catching bubbles in her potty chair!

Charlotte has had quite a few good poopy diapers since the beginning of the week.  Now her tummy looks to be a little smaller and tonight she actually stood up, walked around, and played with Amy and me for about an hour or so.  She wanted to blow some bubbles and then had the idea for Amy and me to blow them and she would take her little insert from her potty chair and try to catch the bubbles in it!  It was a pretty good change from the last few days when she has been relying on the comfort of the couch rather than doing any playing or walking…so Amy and I are feeling better about her backup problems.  We hope she can remain a little more regular from now on and that might make her feel better and a bit more active.

She is still being totally awesome with taking her oral medications, and her GVHD rash looks quite good to us.  So good that we are only applying the hydrocortisone cream twice a day instead of three times.

This weekend is going to be tough.  My big sister and her family are in town from Nebraska for the Easter weekend and we really won’t be allowed to celebrate with them properly.  Charlotte is still in isolation so that means she can only be around a couple of people at a time.   So while Grandma E will be having a get together, we will be staying here at our place.  It kind of stinks, but it is a very small price to pay for a short period until she can get more fully healed.  CJ will have many more Easters to celebrate with the family after this gets done with!  But it should be a little nicer weather so I hope to get her outside doing some walking around the neighborhood soon.