Dr GI checks in

 Well.... my ardent hope was that her GI doc would consider her inflated blood results as a result of the remicade infusions.  Alas, they are not.  It is a separate issue. He asked me to go right down to the infusion center and get her an appt. We are scheduled to see hematologist/oncologist in June.  She will likely have 2 cycles by then so please pray for change, an earlier appointment or just a decrease.  He was not super satisfied with her bowel movements and a few other symptoms.  After her next infusion in June, if there isn't a change, he will increase her dose.  She also developed a rash at her last infusion and we are to keep an eye out for that next time. 

I am really at a loss for words.  I am not worrying...however, I'm sad.I pray, that this is nothing, because I don't know what it all means...it just feels heavy.  Tears come easily.  If you start not seeing my around, it's because I'm sheltering my heart and my mind because it is just overwhelming to me right now.  Just being honest.  I don't want to pretend to be fine when I'm not.  

I had settled in to feeling like I knew the medical things we were up against and how to manage it all.  That came crashing down in November.  It almost feels a little like the beginning when we were hearing something new every month that needed attending.  

If you didn't know, Lillian has heart, lung, kidney, now bowel, chronic diseases.  She is mentally and developmentally delayed.  She is dependent on us to be fed via gtube.  She falls frequently, she has sensory issues and she is dependent on us for bathing, toileting, a personal hygiene.  One of us sits with her each night until she falls asleep because sleep just has to overtake her, she doesn't just fall asleep as a normal child would. We have been told that her brain has deterioration problems.  We've been told there is a mass on her liver.  Now it appears she also has some type of blood disorder.  She has had surgeries to the point I cannot tell you the number. 

I am grateful  that this blood information was uncovered so something calamitous did not occur.   My mama heart is aching, though.  Keep us in your prayers.