Tuesday, July 21, 2009
What its like for Mikayla
Trying to explain what is happening to her has been a challenge. She wants to know why. Why she had to be the one to get sick. I have told her she has cancer. She understands something is in her blood and the doctors here are taking her blood out and putting new blood in. That is the best way I could think of how to explain her problem. She understands about her hair lose as well. Some kids have offered to talk to her, but because they are bald she doesn't want to have to see what she will look like. She is pretty brave. As far as being scared Mikayla doesn't appear like she is. She gets depressed sometimes because nobody is here to play with her. She whines when nurses come in and disturb her rest. She seems to still be pretty independent as well. She wants to do most things by herself. She has become totally infatuated with a Child Life worker here named Kelly. Kelly brings stuff for Mikayla to do in the room. Everything from sand art to door hangers. She is starting to get more of a natural sleep pattern. She talks a lot about what she plans to do when we leave. She first wants to go to the mall and buy a ton of candy at the candy store there. She wants to go swimming. We have not told her she can't yet, but rather we tell her we do what we can. She walks around with assistance because she seems to lack the balance if she makes turns or bends. Disney Channel. She watches Disney 8 or more hours a day. We have seen some shows more than 5 times since we have been here. Little things make her mad easily. She just wants things her way and most of the time even if it is as simple as moving her pillow she tends to cry first then ask us for help after. Her right side acts as if she has had a stroke. Her arm gives her a terrible time. She can bend it at the elbow, but cant make it go up. She instead has to move her torso to position it. X-ray and MRI have come back negative. We don't understand yet what is happening. I hope it gets better so the only hurdle in her life is happening now and the rest will be smooth sailing. The doctors all say she has spunk. I call it like I see it spoiled rotten. She honestly has more fight in her and understanding then you would think a 5 year old could muster. We do our best to be sure she gets anything she wants. Feet rub, pillow fluff, ice cream, etc. Life is not the best for her right now, but she seems to have found a way to be complacent.