I am so excited today. I couldn’t be more excited to report how great things are going with Daniel and his numbers. Although once again we are waiting for a negative on his CMV count tomorrow at 4:00 I have no doubt in my mind it will be negative. At our weekly transfusion today we got a second week in a row of very strong and positive readings on how his blood and cells are responding. He has been about three weeks or so off of the Ganciclovir now and it is pretty much out of his system and his body is responding great to the new Foscarnet. His white blood cell count is in the normal range now and steadily climbing and is almost normal and his platelets are also multiplying on their own now. His lymphocytes are also coming up nicely. I find myself smiling as I am writing this entry. I am amazed at the human body every day. I must have told Daniel 10 times today what a good job his cells are doing. Next week is a big test. A test that will test his B-cells and T-cells. Although it will take a few weeks for results to come back, this is a biggie. It is a milestone that tells us where his new immune system is in terms of coming back strong and will he be able to finally reenter the world and take off his mask. This is a huge one folks. The mask is an enormous hold up from quality of life. He is so ready to be done with the mask and the inability to breathe and the stares and looks that come with it. This has probably been the worst part of being out of the hospital but not really being ‘normal’. It is why he doesn’t really like to go out and I can understand. I see how everyone looks at him and I see how he feels. I see his feelings hurt even though he tries not to let me see. Brave face with the mask my brave soldier.
The only downside to our visit wasn’t really a surprise. I have known that Daniel hasn’t been gaining weight. He hasn’t been losing though which is great but not gaining has been a real concern of mine for a while now. Well it finally was addressed today. Daniel should have a BMI (Body Mass Index) of 20 but his is 3. Yikes! I knew it was bad, but 3. So we have to refocus and get down to work. It is not that I haven’t been working overtime in the kitchen but some changes need to happen to help put some pound on the kid . We need to get into the triple digits here and I am willing to try anything. This is truly a Jewish mothers biggest dilemma. I have my work cut out for me, especially with all the food restrictions it is an extra challenge.
Tomorrow Daniel and I are celebrating with a getaway together and driving to the mountains to a special fishing spot. Stay tuned. I am positive a story will follow.
The only downside to our visit wasn’t really a surprise. I have known that Daniel hasn’t been gaining weight. He hasn’t been losing though which is great but not gaining has been a real concern of mine for a while now. Well it finally was addressed today. Daniel should have a BMI (Body Mass Index) of 20 but his is 3. Yikes! I knew it was bad, but 3. So we have to refocus and get down to work. It is not that I haven’t been working overtime in the kitchen but some changes need to happen to help put some pound on the kid . We need to get into the triple digits here and I am willing to try anything. This is truly a Jewish mothers biggest dilemma. I have my work cut out for me, especially with all the food restrictions it is an extra challenge.
Tomorrow Daniel and I are celebrating with a getaway together and driving to the mountains to a special fishing spot. Stay tuned. I am positive a story will follow.