Hayden’s platelets are still growing all on their own. This is the third week without having platelets and he is at 121k which is closing in on the normal amount (250-300k) a person should have. His neutrophils are at 5,030, normal is 11,000+. We are slowly getting there. His GVH is still considered mild and meds were adjusted a bit to bring down his blood pressure. I get a reading of 120s over 80s when I check him, so it still is higher than normal.

Hayden is easily set off, his temper can go from 0 to 10 in seconds, but that is a normal reaction from the Steriods. He is still loving his meals and has to feed himself.  So once again (since Abby was small) I am preparing foods that he can feed himself.

Hayden still has about 5 or 6 meds that he takes each morning and evening and one that is given just on the weekends-TMP Sulfate. He has learned to fight us when we are giving the meds so we have to be careful they get into his mouth and not all over him. He screams and shakes his head back and forth. I feel so bad, but it has to be done to keep him healthy and alive.

Hayden will start to get IVIG once again on a weekly basis. He has had Rhinovirus, a common cold, for 4 weeks now and Dr. De Santes is concerned it could settle into his lungs and cause viral puemonia, so this may (they don’t know) boost his system each week to help his body fight the cold. Poor kid gets his nose wiped about a 1,000 times a day right now.

His favorite toy right now is anything that “bangs.”  He loves things like his tool bench where he can bang the hammer onto. Pots and pans are always fun but daddy can tolerate that for only a little while. Mommy just blocks it out while Hayden has fun! He has also learned how to use a hair brush, so he brushes not just hair but Abby’s whole body with the brush. It is quite cute.

kb

This entry was posted on Thursday, August 28th, 2008 at 10:41 am and is filed under Journal Entries. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.