The Very Hungry Caterpillar

Today I sat and did the household budget which is not my forte.  Honestly, dealing with money is not exactly my forte so it took me quite awhile.  Between doing the budget, checking my email, and of course having something cooking on the stove all the while, I sat at my desk for a total of two hours.  The notable thing here is that LillyAnna sat in front of me in her highchair the entire time eating.  Yes, I said eating...for two hours.  She had strawberries, blueberries, cheez-its and chicken nuggets.  She has also been drinking like crazy.  No vomit since Thursday.  We are doing all milk now, I decided to just go full throttle because she does not seem to mind the milk and mixing formula and milk was getting tiresome.  One of the first things people said when I told them about the eating and vomiting issues was "Oh, she is on so much medicine!  I know someone who____" or "I took a medicine like that and it made me ____".  I very much appreciate these connections and attempts at problem solving but I see more of this disease than anyone and I have seen this vomiting/non eating thing happen way too many times.  It always coincides with her disease acting up on the outside.  Some think the issues stemmed from the formula.  Besides the small body of research that actually supports babies staying on formula until two years, Lil was on full formula starting at 7 months after being breastfed and since then, she has had periods of being a great eater and periods of the vomiting/non eating.  Is it the highchair?  The food choices?  Swallowing issue?  Me and my loving, supportive family and friends have covered all the bases.  The one constant is that she stops eating and drinking when the disease is bad.  Not surprisingly, her blood work looked even better this week than last.  C-reactive protein stayed <0.5, sed rate went from 9 to 7, and white blood cell count was 10 and is now 9.7.  To sum up, these are inflammatory markers we follow that are a loose indicator of Lil's disease activity.  All of these numbers are in the normal range and these changes would not be significant in a normal person's blood work but with knowing so little about Lil's disease process, it is one thing I hold on to and the fact that they are going down in conjunction with the fact that she is clinically improved is significant. So I decreased the steroids to 0.8mLs.  The last time she was completely weaned from the steroids was when we discovered the issues with Remicade so it will be interesting to see what happens when she is weaned from the steroids this time.

We do have the Humira back on board and the lesions look better.  I have some ideas to discuss with the newly returned Dr. R.  I want to ask if it is possible that she could have lesions on the outside of her organs which we would not see in a scope.  Also, in the past weeks, two random people asked me if she had been allergy tested.  I am assuming that this is something the docs have already looked into but it does not hurt to ask.  Actually, one of the things I so admire about Dr. R is that I feel like I am truly a partner in Lil's care.  I would hope he would say the same but I am sure I annoy the crap out of him sometimes!  I can never tell though, so that says a lot.  He is very open to hearing my ideas and thoughts on her and her condition.  I know how busy he is with patients who are much higher on the hierarchy than Lil but he always has time for me and more importantly for Lil. 

I will keep everyone updated but it looks like we are in an upswing.  There have been other times that I thought we were finally coming down the other side of this mountain only to get caught on an errant branch.  Chris often says he feels in his heart that she is just going to keep getting better and one day we will look at each other and realize how well she is doing, how easy life has become and that this is over, forever.  I want to believe that too but it is hard.  I will keep my head up, enjoy the good times and wait.