190

190. That is how many pages I stood copying at Kinkos...all from Elizabeth's records that I will be trekking to UCLA tomorrow morning for our appointment with a GI doctor there. 190 pages from her GI chart alone, not including all the years she has been born or anything other than test reports and notes on things having to do with her stomach. It is one thing to live this stuff, and it is something else to have it presented to you in paper. Until the last year and a half, we would casually go through a scope or surgery. She'd have it done and we'd get past it. Yesterday I took the time to sit down and read through the 190 pages...and I cried. I cannot believe all that Liz's little body has gone through during her short life. And the surgeries; I cannot grasp, though I have stood watch over her before and after each one, all the times the surgeons have cut into her and manipulated her little tummy. These pages hold the story of her 13 scars. I stopped counting the number of scopes that have been done after 12. The doctor's words were what struck the most. Words that may have not been said to me, or if they were I let go because who can dwell on all of that or focus on it all? You'd go crazy if you did.

And yet now, I must. Until we get the right plan and diagnosis for her, it is no longer alright to let things go so easily. I have to focus if I am going to continue to advocate for her and help be the go-between for all the different doctors involved.

My stomach is sick for tomorrow. We will met with the new GI doctor at UCLA first.It is true that we have a new GI team here in LB now, but UCLA needs to see her too since a fecal transplant is still on the table and they would be the doctor to do such a thing.That appointment I am not nervous about as, let's face it, it will mostly be a meet and greet. There is no way the new doctor can soak Liz's whole case in during the first visit. I'll leave her the 190 pages and ask her to please help us.

I am most nervous for our afternoon appointment with the Immunologist. I had a heated conversation with him about Liz while she was in the hospital. He is conceited, arrogant, opinionated.....and brilliant. I need his brilliance, so I'll take the rest. He wants me to be assertive and forceful (he told me so in his own wonderfully cocky way, and my inner-strong woman wondered how he must speak to his wife), so I am preparing myself to go in there and show him how I can go head-to-head with the big boys.
That aside, I am most sick over what we may hear. During this appointment, we should hear all of the results from the tests and re-tests that have been done. I know many of the results already, and tomorrow Dr. A hole-Brilliant will link it all together for us and may even offer a diagnosis. We should also hear about his plan for therapy for her. Walter moved mountains to be able to get off work for this appointment and I am relieved he will be there to take it all in with me.

Please pray for us tomorrow. For Elizabeth's tolerance during a whole day of appointments. For my strength and patience. For the wisdom of the doctors. And, for us to be at peace with any news or care plan presented.