If You Give A Mouse A Cookie

I know it has been awhile since my last blog post when the phone calls, texts and facebook messages start rolling in.... Thank you all for your continued support.  I am sorry it has been awhile but starting my new job has kind of consumed me. 

Things with LillyAnna have not changed much.  She is still vomiting profusely.  She vomits intermittently throughout the day and then at night the real fun begins.  My mother-in-law had the pleasure of sitting with Lil for bedtime the other night.  She summed it up pretty well when she said, "You just have to see it and experience it to really understand how horrible it is.  It is horrible." 

We saw the great Dr. R last week.  Because LillyAnna's blood work has been pretty consistent he said we do not have to get it done every week anymore.  On the surface that sounds like good news but the only reason we are not getting it is because it is not helping us help her.  He told me that it is up to me if I think she needs it more often.  In other words, if she does not look good- get the blood work.  That is good and I am so honored he trusts me to make that decision but it does feel like a little more pressure.  It is just one more decision I have to make based on "how she is".  I told a good friend of mine today that she was having a bad day.  She asked what a bad day looked like.  On  a bad day Lil wants to be held more, she grabs at her body and says owie, she will sit in her highchair for longer than any two year old should with her head slightly leaning to the side very quietly, and she just does not look good.  She is pale, a little lethargic and her eyes look sad.  The beautiful thing about Lil is that she will pick herself up and move past her discomfort.  All it really takes is a bit of distraction.  My well meaning friends and family sometimes tell me I need to slow down and not do so much but Lil always seems better when we are doing something interesting or we are around family and friends so it is worth it. 


For about a week, her hair has been falling out in clumps.  Dr. R says that it is most likely from the trauma she experienced last summer.  He said that they see it often in their transplant patients; they go through something physically traumatic and about 6-9 months later their hair falls out but grows back.  We are hoping that is what this is.  It already seems to have slowed down but I can see that it is thinner. 

Dr. R is going to talk again to GI about Lil and see if we need to do some repeat tests.  Apparently some of the medications she has been on can cause anatomical problems so the anatomical problems we looked for before that were not there may be there now.  Great.  He would like to do a stool sample to look for an inflammatory marker that indicates Crohn's Disease.  The problem is that we are already treating her for Crohn's.  If we are already treating her for it and it is still this bad, that does not seem good.  Of course I screwed up the first stool sample because it sat in my fridge for over 24 hours (sealed tightly in a cup AND a bag!).  Thanks to lots of badgering from my dad I got a new specimen cup and should be able to bring a specimen in Thursday. 

Despite the adorable pictures I like to post of Lil seemingly eating, she is not.  She eats very little and vomits all of it up.  Which is why she is losing weight.  The good news is that she is still growing taller which means she is getting enough nutrition... for now.  This week's news is that she is suddenly drinking an obscene amount of milk.  I mean like a lot.  It has been going on for about three days.  I was hoping to get one of Dr. R's glib remarks when I emailed him about it.  You know something like "drinking is good".  What I got was "keep track of how much she drinks tomorrow".  People we are with get so excited when she eats something.  I try to share their enthusiasm but in my head all I can think about is how the more she eats the more she is going to vomit later.   

I am enjoying my job.  I really do love working in restaurants and bartending is especially fun for me.  You are so busy and in the moment, it reminds me of practicing yoga.  It takes focus and your brain does not have room for worry.  That is until it slows down and I have time to think but I am getting better at that too. 

You were right about working.  It does get my mind off of things and Chris has been amazing.  So have our friends and family who have really stepped up and offered to help with bedtime on the nights that I work.  Chris is thinking about some strategies he can use to be able to do it himself and so we will not need someone every night but for now, I cannot tell you how much your support has meant to us.  Besides being messy it is just emotionally exhausting to watch Lil throw up for hours each night.  Having someone here to give him the chance to clean up, get a shower and take the stress off of making sure the twins are in bed is so helpful. 

In our society people are always saying "Hi!  How are you?"  I always felt proud that I answered "Good!" and I really meant it.  No matter what is going on in my life, I am usually able to keep my head up and find the positive.  When people ask these days I find myself saying "ok" or just smiling.  I have never been a good liar.