Let's get the bad over with first. In answer to everyone's question......NO LUCK ON THE EATING!! She simply refuses to let that bottle pass her lips. When daddy got there today, he held her and I tried to "gently" force the bottle in her mouth but all she would do is cry and let it sit there with the milk falling out. So we gave up for now. The doctors agreed with me that it would be a waste of time for us to try to NG tube so they decided to start her on IV nutrition called TPN. Basically this will give her some calories and protein and the hope is that she will start to get her appetite back and then we will be able to stop it. The bummer is that she would have probably gotten to get unhooked from the IV if she was eating but now will be hooked up indefinitely!! Her energy level seemed to have dropped again today and even though we got out for a walk, it was mostly walk a few steps, sit down for a bit, walk a few steps etc. etc. And the rash on the back of her head doesn't really seem any better either. They took a swab of it today to see if it is a fungal or bacterial rash but we won't know anything on that until at least tomorrow. Please pray for her to turn around soon!!
Now on to the good stuff. We got a visit from Reid and his mom Cheri today. And I am happy to report that there were no injuries suffered this time (see this post) Reid was a little shy today so mostly wanted to hang with mommy and Ella was not herself either so it was a very quiet visit. I am sure that Cheri and I should be thankful as normally we probably wouldn't have been able to visit at all because we would have been chasing the kids all over the place. We had no luck getting a picture of the kids by themselves so of course the mommy's had to be in the photo too. Thanks to my old co-worker, Erica, who also came by to visit and was the certified photographer of the day as well as the child entertainer (of all the kids who were out playing on the floor). I have also attached a picture of Reid from Halloween so you can see his "true" personality. Isn't he the cutest!!!
While we were hanging out in the hallway for hours today, it was like social hour for all of the cancer warriors. Here is Ella hanging out with one of our new friends who has quickly become one of our favorites. This is Delilah and she is battling Neuroblastoma. We are madly in love with her and her wonderful family. It has been cute to watch the girls get to know each other. This is one of those pictures that has me realizing the differences in my life right now....Ella and her friend both hooked up to IV's.
Inclusion, We Have a Long Way To Go.
1 week ago