ACTH Update

This photo is from our hospital visit just before we started the injections. I wanted you to have a before/after of what this medicine is doing to her weight.


Here she is week three. (photo coming soon)

Marleigh has been on the ACTH now for almost three weeks. She is doing great. We have been going to the pediatrician 2 times a week since she began treatment on October 2nd, to test her blood pressure and her blood sugar. Her system is handling the drug very well. Keith and I have a good system for administering the injection and even though she cries a little, it doesn't take much to cheer her back up.


We had an in office EEG on 10/23 (we like these because they only tape on the leads so it is not as uncomfortable for her and much easier to remove!) Here you can see Conrad and Andrea applying the leads, the whole process takes 15 minutes or so.


Marleigh doesn't love this process, but she sure handled it well this time.

The good news is her results show no infantile spasms, the bad news is her brain patterns have not completely normailized - but they have improved since the last test. These are the supplies for doing the EEG



Marleigh started physical therapy two weeks ago. We have an Occupational Therapist that comes to our home once a week to work with her and show me things I can do to help her develop her motor skills. We mostly do some stretching and tummy time. But she has given me information on infant massage and some resources to work with.


Here is a picture of Lindsey helping her stretch. She is behind on a few things, but she is doing well with holding onto things, bringing her hands together and getting her hand in her mouth.


My friend Katie came out to LA from Colorado for a visit. More on this visit will be on our family blog.