Did you all miss me and think I was in the hospital. This time, thankfully I was not. I did successfully go to Georgia with my good friend and spent time with my sister, aunt and family. It was a good weekend. I was nice to be able to get away and not have to deal with medications and sick kids and whining. But I surely did miss them all though. When you are away from your family, it really gives you a new appreciation. My sister and her family gave us a wonderful gift, her husband wrote a song for Avery and my niece is also part of it. Simply beautiful. I am going to figure out how to load this on the blog tonight, so please listen to it.
Janessa had a sleep over at her friend's this weekend. She did not seem to miss me too much but I sure missed her. I guess she is used to me always being in the hospital so it was nothing new for her. Sad.
Isaiah actually paid attention to me this time. When I am away for some time, he will often ignore me when I get home and just act as if I am not even there. Certainly his way of telling me he is ticked I wasn't around. It is always great to see his beautiful smile though. He has not had a cycle in 5 weeks. Shhhh. I am sure I am speaking to soon but I will take it while I can get it.
Avery, who is normally thrilled to see me was not so happy. He has been running a low grade fever all week and even had one today. He has been really tight throughout his entire body which is really concerning. This dr. follows us closely by email and phone. She got Avery's report from the last discharge from the hospital and said that he seems to be getting more and more involved with each admission. I had a phone conversation with her today and told her that I really thought that his disease was progressing and she AGREED with me. Not want I wanted to hear but..... It is reality. He last admission, he had a nerve conduction test and it showed mild to moderate peripheral neuropathy throughout his arms and legs. This is not good and is also a sign of disease progression. She said that this can be really painful and cause him alot of ailments which is really sad. She increased some of his meds and is adding daily valium to the mix. More comfort measures basically. I still hold confidence that he will not be in the hospital for the spring and summer. Just take it day-by-day. I just love this family and appreciate what I have. BTW, I cut my man's curls off and will post pictures soon.
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