A La Orilla Del Viento/at the Edge of the Wind

In this post I am going to ask you to keep your head about you.  I am going to ask you to do it two times.  This is the first. 

I have been thinking about something.  People say as long as you are trying your hardest or as long as you love your children you are a good mother.  That is bullshit.  There are times I am just not a good mother.  Example: this morning I was trying to get all of the kids in the car, a bag packed and we were late.  The baby was crying, Nettie was screaming "Mommy, Mommy, Mommy..." at the top of her lungs (think Stewie but much louder and very high pitched) and Chris was refusing to put on his coat. I leaned in the car and screamed shut up as loud and uncontrolled as could be at my kids.  Does this make me the epitome of a bad mom?  No.  Have I scarred my children for life?  No.  Was I a good Mom?  NO! Is that ok?  No but it happened and I will do my best not to let it happen again.  I could sit here and list stories like this and I could list hundreds of stories I believe describe me as the kind of mother I dream of being.  I won't do it now because I am secretly afraid you will not agree and then where will I be!  This goes for every relationship in our lives; sometimes we are not good friends, daughters, nieces, employees and even wives and that is the bottom line.  But sometimes we hit the nail right on the head and we are amazing.  Sometimes we are just somewhere in between.  Does this make it ok when we are no good?  I guess it depends on how bad it gets.  Obviously there are things that are inexcusable.  Maybe it depends on if we allow the same mistakes to happen over and over.  I am sure we have made some mistakes with LillyAnna but one thing the past two weeks has made very clear to me is that taking her off her current course of medications is not an option. 

One discussion I have with family, friends and doctors at least once a week is if we should take her off all medications and see what happens.  The question is are the medications causing more problems than they are solving.  So far, we have agreed with Dr. R and our team that this course of action is just far too dangerous.  It took too long and too much medication for us to get Lil's disease under control.  Especially after last Monday, we are even more confident that this is the right course.  It is not perfect but it is all we have right now. 

 

Tuesday I spent an hour meeting with Dr. R.  Lil's antics the past couple of weeks have caught the attention of all her friends:)  The meeting was extremely validating for me and frightening as well.  We first talked about the MRI.  Nothing new there.  As I mentioned Lil's brain scan was normal, the lymph nodes in her neck are not cancerous, her abdomen showed no inflammation, and there was bursitis in her knees.  Although the MRI did not show arthritis Dr. R and Dr. B believe she does have it.  This is not surprising as it is just so obvious although the methotrexate injection seems to be helping it a little bit especially in her feet, not so much in her hands.  Dr. R has sent Lil's paperwork to the NIH personally so hopefully this time there will be no mistakes and he is going to check on it this week.  We are going to start her on folic acid for her mouth sores.  If the mouth sores are due to the methotrexate folic acid should help.  If not... we will decide what to do next but they are bothering her more and more and I am finding more of them. They come towards the end of the methotrexate week.  The lymph nodes have not changed as far as we can tell. 

I was very surprised to see that Lil has lost weight because she has been eating more and throwing up less. She has once again grown taller but has lost weight and not a tiny bit either.  Seeing that line on the graph go down felt like a punch in the gut.  And the cherry on top is that I had thought the injections were making a difference in her eating and vomiting but once again about six weeks out her old trends are coming back.  Her vomiting has slowly started to pick up and her eating is slowly starting to decline.  Where two weeks ago she was running to the table yelling for dinner (which we have never seen her do) now she is eating only one meal a day again. Dr. R mentioned that even though the MRI did not show anything, he is considering another scope.  As he put it, with frustration in his voice, he knows there is something going on in her GI tract he just cannot prove it. 

This is going to be the second time I ask you to keep your head about you.  Dr. R mentioned in this meeting that one of the doctors on his team suggested doing a bone marrow transplant on LillyAnna.  Let me be perfectly clear: we are not going through with this plan.  However, the idea that a doctor I respect would suggest it, they would discuss it and my doctor could clearly outline why he believes it is not a valid option (showing the thought he put into it) was heart stopping.  We do not even think it will be worth it to do a bone marrow biopsy because her blood work is not showing us enough evidence at this point.  As Dr. R put it, we are teetering on the edge of having control of this disease.  He also reminded me that she is always discussed and never forgotten.  This is something I need to hear.  There is just so little doctors can do for her, I am in charge of so much of her care.

 

In the meantime LillyAnna is living her beautiful little life.  Her new bed has arrived and she slept in it for the first time!  As of this post it has not been christened with puke but it has only been one night.  I took the time to iron her new sheets and pillow cases for the first night.  If you know me at all you are laughing out loud right now.  Her new favorite thing to do is dance and make you watch.  She likes to paint and color then hang her artwork next to Nettie's.  And she loves to sing.  She also likes to play Star Wars and Batman and put her babies to sleep.  LillyAnna is all two year old:)

Update: bed has been christened!! LOL!