Thank you for your prayers. We have much to be thankful for. God is so faithful to give us exactly what we need to grow and trust Him more. The day went smoothly overall. Annabelle only whimpered when they accessed her port and drew the blood. This is a big improvement from when we started in February. Also, the nurse measures and weighs her every month and she has grown 3.25 inches since March. This is great because they told us her growth would likely be stunted until she was off of ACTH (the shots she gets every other day that we are slowly tapering). We are so pleased.
A smaller praise that a only a caregiver can fully appreciate is that I am required to collect a 24 urine test from an active potty trained toddler who is used to taking herself. The praise is that I was able to do most of it while we were stuck there most of the day instead of trying to make sure I am with her at home every minute. Since she is not dry at night yet, we have to use an adhesive bag - very difficult. Please pray it stays on all night so we can be done in the morning.
The day was not any shorter because the volume of IVIG was the same even though the concentration was slightly less. So we were done at the usual 4:30. My mom had my girls and usually brings them home, but she came down with the stomach flu today while she had them. So I drove out to pick them up, and left Annabelle in the car away from illness. Please pray that she heals quickly and that no one else gets it.