At least....

"At least we are a little better than this time last year."
These were the words of Elizabeth's pediatrician today. First, I needed that reminder. Liz is better than she was this time last year. Last summer cdiff ravaged her poor gut yet again and being free of that infection right now is much better than last year! Dr. L is speaking my language when she starts a sentence with "at least." There are times I get through a day by reminding myself that "at least"....... we are blessed in somany ways, or at least Liz is so much more healthy than some, or at least this can end for my girl one day.
At least = luckily, wonderfully, thankfully, prayerfully, hopefully.
Second, how much do I love that Dr. L is so invested in my girl that she refers to her as "we"? She is walking this with us and she absolutely is part our "we."
Dr. L. said those words as she grabbed my arm, told me to take a deep breath and hugged me for a second time. I quickly and quietly had wiped tears away earlier in the exam room and I know she noticed my obvious frustration and concern today. I try so hard to keep my frustration, anger and tears out of sight from Elizabeth, but sometimes it overtakes me. Today, as Liz was being examined and wincing from pain, I couldn't help from starting to cry.

Some of you know that last night was a difficult night for Liz and we were almost sure of needing to head to the ER. In fact, I called Walter home early from work which I never do.
Liz started heaving and retching and it took much longer than it should for her anti nausea med to kick in. She also had horrible stomach pain and her poor little bum is painful and bleeding. Both of those issues I knew could wait until today, but the retching is something that needs IV medication if her Zofran at home doesn't work because she cannot blow her Fundoplication.
Anyway, the medication finally worked and she ended up falling asleep.

The cause of it all, we are sure, is impaction. Her motility is awful and even on a huge amount of Miralax, mag citrate and Dulcolax, she is impacted. You'd think this would mean a person could not go to the bathroom, but when it is this bad, she actually can, as stool works itself around impacted stool. Even more evident of that is when she soils...which is happening throughout the days. How awful for a preteen girl is that?!
It is bad and there is nothing more I can do from home to help her, so I've called the GI doc and I went to her pediatrician this morning so that she can put pressure on the GI team to figure something out.  Everyone wants to avoid admitting her, but we may have no choice.
Dr. L is pretty fired up, which is good for us. She will talk to GI and she is also crazy-frustrated with the Hem/Onc doc at CHLA who has yet to call us both back with his interpretation of Liz's bone marrow slides. I haven't yet written about results from her labs drawn at CHLA, as I have been waiting for the final notes from Hem/Onc there.
Poor Kate went to the office with us today because she is pretty sick with a horrible sore throat. The kid has had it since Thursday and hasn't been able to eat for two days because it is so bad. I feel awful for her; she is miserable. Dr. L. said it looks like Strep and half-jokingly said that I need to send Liz away from our house. The girls got a heavy lecture from her again about hand washing and how nothing in our home should be shared.
Instructions everyone should follow of course, but the weight of it and knowing the gravity of what Liz needing an antibiotic means is yet another reminder of how not-normal this whole thing with our Liz is.

I hate all of this. I hate that our wonderful couple of weeks of Liz feeling pretty good was like a dream, because like a dream I knew we would eventually be snapped back into the reality of her health issues. 
Don't get me wrong- I just know we WILL get to a point where the dream of good health ( or maybe just wonderfully "fair" health) is a reality, and I won't worry daily because any issues she may have will be managed.
For now we are not at that point.
We are, though, a little better than this time last year and I must remember to be encouraged, excited and comforted by that on difficult days.

"We were promised sufferings. They were part of the program. We were even told,  'Blessed are those who mourn'" - C.S. Lewis...... (for they will be comforted)