I realized that I never posted this. She is actually at 11 1/2 months now but here is what I had for Month 9.
With month 9 came our favorite holiday – Halloween. We LOVE dressing up and making fun costumes. We love carving Jack-O-Lanterns and we love candy!!!! This year our daughter wanted to be a centaur and since I am insane I decided that I would make it. Who the hell has the time to do that when your child is healthy, let alone dealing with tsw. I clearly have lost my mind.
The first week of Month 9 she wound up missing a day of school but it was only 1 so it wasn’t that bad. Her face started out terrible again and has continued to give her problems. We have tried so many things but nothing really seems to help. There are days she doesn’t want anything on her skin and I really don’t push her. If something looks really open and I worry about infection then I will treat that area but I tend to let her call the shots with the other areas since I have no way to know how it feels.
Her hands and feet continue to be a problem but her arms and thighs are not really red anymore. They are still super dry, especially behind the knees and in the elbows but there is definitely an improvement.
The lower part of her stomach often has deep creases that are pretty painful. Her stomach was actually very swollen in this picture so it doesn’t show how deep the creases go, but it was the best one I could get. Her chest is white and soft.
Her lower back is always very dry and cracked but the top of her back is soft and white.
When I look at these pictures and realize that I consider this an improvement, it scares the shit out of me. I can’t believe what she has been through. I curse the pharmaceutical companies and the irresponsible doctors who act as their puppets.
Halloween came and she had a parade and party at school. She had a great time but was worn out when we got home. She said she was too tired to go trick-or-treating with her friends. We went to a Halloween party that Saturday and she had fun but I could see she wasn’t feeling great. We left early and she missed a birthday party the next day. I hate how many events she has missed over the last 9 months. I blocked her face in the picture below for her privacy.
She seems to be pretty tired again, which is so disheartening. I feel like she is sliding back in some ways. I wonder if this is something that will cause permanent emotional damage. She is so resilient and tries to hard to push through this all but it wears her down. She still cries a lot some nights about how she hates her skin and the way she looks. It breaks my heart every time. She keeps it together while she is at school or with her friends but when she gets tired at night, it all comes out. A friend of mine reminded me that those are coping skills. I am amazed by this child every day.
Month 9 has ended with her feeling sick and missing another day of school after the long holiday weekend. Her face was oozing and then drying up by night. Next day oozy again – then dry at night, etc. I just can’t wait for this hell to be over!