Tuesday, May 5, 2009

It's back.

After a good week, including only waking once overnight to eat on Saturday and Sunday, Romo had a bad day yesterday. He wouldn't sleep or stop crying unless I was holding him, which was difficult since I also have Luca to look after and play with. He finally fell asleep about 9:30 after maybe 3 hours of naps - total - all day, and I thought maybe he'd sleep well as a result. But it was not to be, and this morning I found out why. After being healed for about a week, his spot blistered again this morning. Poor guy seems to have a lot of pain and/or discomfort right before it blisters, which absolutely breaks my heart in half.

Anyhow, these pictures aren't pretty, so apologies in advance, but I wanted to document this. A big reason I'm doing that is because we've found it exceedingly difficult to find information and pictures online, since Mastocytosis is so rare. So I guess my hope is maybe some other parents out there with a newly diagnosed kid will find this and take comfort in knowing there are other kids out there dealing with this. It's hard and it hurts to not be able to really help him feel better, but there is something bigger than that. Rohan is a sweet, smily, lovable baby, and this disease is only one part of his life. He's going to be such a strong boy for having made it through to the other side.

So, here are the pictures of the blister.

1 comment:

Tabitha said...


I found this blog and I thought that although your situation isn't near as bad as theirs, maybe you might find something helpful there... she and her two kids all have masto issues. http://mastomama.blogspot.com/

I hope you and little R are feeling better soon! You are both so strong for dealing with this!


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