It's hard to believe it has been more than a year since Lilly first went to the hospital. All the memories still feel so much more recent than that. I can still remember the sound of the helicopter lifting off to take her to Peoria and how helpless we felt at the time. For the past few weeks, we have been referring back to this journal remembering the different things that were happening a year ago.

Lilly had her monthly visit with the doctor this past Wednesday. The last few times have just been visits with no infusions, just blood work. She hasn't had an  Eculizumab infusion since the last week in July. Things have been going so well, that the doctor gave her a break and didn't do any blood work this time.

She did do a urine sample though because her protein levels were up a bit last time. Unfortunately they went up some more. When she was first admitted to the hospital, her protein levels were very high, but have been in the normal range for the past several months.

This could be happening for a number of reasons: scar tissue in the kidney filters, tapering off of some of the medications, etc. We didn't know this until recently, but the blood pressure medicine actually helps reduce protein levels as well. The blood pressure medicine she was on was causing side effects so that got changed recently and it seems the new one isn't working as well. The doctor increased the dosage to see if that will get the levels back down again.

Lilly is very upset because all she hears is something is wrong and doesn't think about how much progress she has made. Every new pill is a disappointment. She couldn't go to sleep last night and Laurie had to lay with her for a while to get her calmed down. She seems in better spirits today though.

Her next appointment isn't until 10/12. For that, she will be doing labs here in Bloomington and then a video appointment with the doctor rather than traveling to Peoria.

Hang in there Lilly!

Brent & Laurie...