Llama Llama Time to Share

I have mentioned before that my attention is caught when many people in my life start saying the same thing.  In the last couple of weeks, the idea of getting a second opinion (or actually a third since we have already been to CHOP) has been a strong current in my converstations.  It almost feels like cheating to talk about this even though I know how stupid that is.  AI has been so good to us and Dr. R is one of the most amazing people I have ever met.

I was talking to an acquaintence who shared her mother's story of a chronic illness.  Now that we live this life, I hear a lot of these stories.  People want to share them and I enjoy hearing how chronic illness has affected people.  That sounds sick but it is true.  Most of the time when people tell me their stories, they are at a point where it has come to some conclusion and I can feel how they have found peace in whatever that resolution happened to be.  Sometimes it was a happy ending and sometimes it was not; but always, there is an intimation of the way the person's life has evolved from having been through it.  The story went that her mother had been very sick for a long time.  The father and mother were making most of the medical decisions but after ten years of watching their mother slowly die, the children stepped in and took over.  She said that her parents had not had second opinions and when questioned they talked about how much they loved their doctor.  Of course there was much more to the story but my point in mentioning it is that I felt the need to defend her parents' decision to stay with their doctor and in doing so I realized that my reasons for dragging my feet on this same issue just plain suck.  It is safe to stay where we are, it is easier, it is comfortable, she is doing 'ok'.

In my heart, 'ok' is just not good enough.  What really sticks out to me is that she is so young and if this condition could be associated with another disease or does not miraculously go away, we owe it to her to find out as much about it as we can.  Although I understand what the doctors are saying, it is not ok with me that she vomits almost every night, that she pulls on her legs and feet and says owie.  It is not ok that she conitnues to develop pustules.  Having someone else look at this will not hurt anything as long as we are smart about it (I hope).  The National Institute of Health contacted us in December about being a part of their research.  Although not much, there are some things I can try to do to move this along. I also need to call some other children's hospitals and see what happens. 

This is a small pustule she developed this week.

For now, Lil had another reaction to the Humira.  As per my google research, I tried moving the injection site to her leg.  I had been giving it in her arm but moving the site did not help as others stated it helped them.  A dose of benadryl last night seemed to help the swelling and pain.  The same night as her injection she vomited immediately after receiving her Methotrexate even though I had given her Zofran in preparation.  So we had to give her another dose the next day.  Her temps continue to be consistently on the high end although they do not go much higher than 100.7 degrees.  She ate well today and had a great time playing outside in the beautiful weather.  She was very fussy this morning but as I mentioned to Chris, sometimes getting out of the house distracts her and she feels better.  That happened today and if she can be distracted it is not that bad.

Goals for this week: write letters to local politicians, call hospitals in Boston and Cincinnati, excerise at least four times and maybe go to yoga at least once (because it makes me feel good).