I have been slacking since the holidays hit so it is time to get back on track and start posting updates. The itch intensified at the beginning of month 10. The first time, it was a few hours after a bath with dead sea salt and baking soda, so I don’t think that was it. She was freaking out that she couldn’t take the itch. I tried to calm her down but this time nothing I did helped. She eventually seemed to calm herself down but it took me by surprise. The holidays were coming, she was getting more frustrated, I wanted to help her and I just felt exhausted. We have had a few episodes like this over the last couple of months. The timing hasn’t been great but what can you do? So, here is what has been going on the last 2 months.
My sister always comes to visit with my nephew’s sons for Thanksgiving. The boys are close in age to my daughter so she loves to see them. We go to Macy’s Thanksgiving Day Parade every year – rain or shine. My sister and I have been going for over 20 years and when each of the kids hit 5 they could come with us. Well, my daughter just couldn’t make it this year. Honestly, it was so cold and more crowded than usual so it was probably good that she didn’t come. I did miss her though and I am so sick of her missing out on things that she loves.
Christmas came and went without any real drama. She went ice skating for the first time since February. She has had several sleep overs (all at our house). She also went to an indoor trampoline sports center and had a blast. Her 10th birthday was at the beginning of January. It was a busy and fairly happy time. At this point I can’t even remember what her skin was like, but I know it wasn’t great and the itch at night was horrible. It is all a blur now.
She didn’t miss much school, which is good. She had a bad cold and missed a couple days but only missed 1 or 2 other days because of her skin. I should also mention that she has not used ANYTHING on her skin (below her neck) since sometime in month 9. I will probably do a separate post on moisturizer. She still uses white petroleum jelly on her face because it hurts when she doesn’t.
Sometimes I feel like this is never going to end. I do see improvement in her skin but it is such a long daunting road. If you are going through this with your child, try and focus on every tiny bit of improvement because it is so easy to forget about the progress and focus on how long this takes. Here are some skin pictures.
Forehead Pictures – Big improvement from November to January on that right eye. Also, the eyebrows are growing back but sometimes she rubs so hard that they break off.
Nose and Mouth – This is day to day. We never know what to expect when she gets out of bed.
Hands and Wrists – These are still problem areas but are soooooo much better than they were. She no longer needs gloves.
Neck – This is like her mouth area. Some days it isn’t bad and other days it is awful.
Arms – Huge improvement in her arms. The top of her arms are so smooth and soft. The lower part isn’t as smooth but it is so much better than it was.
Chest and Stomach – Another area where there is huge improvement. It is very smooth until you get below the belly button. Notice the difference in color from her neck and her chest.
Back – Another area that has shown so much improvement. The top of her back is beautiful – so soft. There are days that it is a little dry but more often than not it is super smooth. The lower back still sucks.
Legs – Her thighs look great and her calves are improving a lot. Her knees are still wrinkled but nothing like they were.
Ankles and Feet – Her ankles are still a trouble area but they have improved. Her feet are much better. She get the occasional cut when she scratches too much but they are basically very smooth.
So, onto month 12! I can’t believe it is almost a year of this hell. One day this will all be a bad memory.