Excerpt from my diary:
The girls had UV treatments today. Carly has lost a lot of hair from the large lesions on her scalp. The good news is that those large lesions are now gone. My husband isn’t convinced this is Psoriasis and I am just not sure what to think. I am exhausted and not sure how to handle this emotionally. Right now my heart is broken for all they are dealing with.
Last month we traveled to Louisiana just as the girls were being treated for strep once again. Katelyn’s “Spots” progressed and now we are doing UV treatments 3 times a week. The drive back and forth (40 minutes) really keeps me running. I feel like I never stop. On top of the physical stress, I am emotionally stressed. Carly has lost a lot of hair but in general the girls are doing great. Carly isn’t bothered by it at all. She picked out some pretty scarves for her hair but hasn’t decided to start wearing them yet. We got her hair cut last week and managed to layer it in a way that hides some of the bare spots.
Katelyn’s spots are primarily on her belly and back. She doesn’t say anything about it but I see her covering up with long sleeves to cover the spots on her arms. Unfortunately she is starting with spots on her scalp.
All this aside, we are having fun. Last month Katelyn and I went camping at the Franklin Institute. At the planetarium we were able to see Saturn and she just loved it. After breakfast we went to the Philadelphia Art Museum – her other favorite. – she is 8 and obsessed with Van Gough!
It was an exhausting two days but it was wonderful!