I mentioned in a previous post that Madeleine’s hair had started to thin. Well, now it is falling out in clumps of many hairs at a time. When I got her dressed today and pulled the shirt over her head, there was hair all over. And it hasn’t stopped. When I feed her and lift her out of her high chair, there is hair stuck to the back where her head rubs. When I rocked her to sleep, there was hair on my arm where her head had been laying.
Yes, this has caused tears. Both my mom and I. My heart always sinks when I find more. So tonight I decided (via the suggestion of a friend) to clip a little bit of it so I have it for her baby book. Of course, this made a pronounced “bald” spot, but we purchased some head bands today. Now that I can’t do the clips anymore – I still want to do cute things with her head/hair.
Now, in other news, I have been calling the hem-onc clinic since last Thursday feeling like something was wrong. Today they finally said they’d try a different pain medication because she could be having neuropathic pain from nerves “re-awakening”, so to speak. Ok, good. Today Tracy (the ARNP) called that in and we gave Madeleine her first dose before bed. If she sleeps better tonight, then we’ll know that that was the issue. We go back again on Thursday to see Dahlia (the other ARNP on our team) and she will evaluate the situation.
I didn’t even know she could be having neuropathic pain! I thought her spine was re-compressing with the stepping down of the steroid dosages, which had me completely worried and stressed out.
Otherwise, all is well. She has been rolling onto her side a little bit and still seeing some leg movement. We have an appointment for physical therapy next Monday before her clinic/lab appointment, and I am excited to start that!!