He has been experiencing REALLY bad withdrawal side effects over the past week as we've been weaning his dose. He's gained 4 pounds over the past 2 weeks from eating (mostly cheese) 24/7. He's had night terrors, sweats, and can't manage to sleep more than a 2 hour stretch at a time. His inner dinosaur has been roaring at us and doesn't like walking. He likes to sit and play with toys or be held, ALL day long. We will gladly open the door to let the dinosaur out of our house this coming week.
However, we are a bit nervous to see if the surgery has alleviated Kelptyn of his ICP. Time will tell. If he can go 6 months without ICP, we will be more comfortable. We've learned that the human brain is 25% adult size as an infant, 80% adult size around ages 2-3, 90% adult size around age 5, and fully developed around late teens. No wonder he needs more room. Two bone marrow transplants mean his bones will remodel VERY slowly and they just can't keep up with that kind of brain growth, so we are hoping we can get him through this period surgically.
On another note, his blood work continues to tell us that the donor cells continue to take up residence in his body. In addition to, GREAT blood production, we got the results of the bone biopsy from his surgery. The pathologist tested bone that was removed from his skull and she found that he had 8% female cells in his skull's marrow. That's good news. We are now waiting to find out if she can test an osteoclast to find out if it is male (Kelptyn) or female (donor). This is not a test that has been performed before at this hospital.
Thank you for your continued thoughts, prayers, and well wishes. Kelptyn continues to teach us that when you meet a challenge in life and you think you gave enough...that's when you give a little more....because life is worth fighting for.