11/7 Fri Evening Update

So it appears that we finally have a gameplan! I like having a gameplan much more than the "let's take it day by day" approach. The surgery team has said that once Ash has been NPO for two full weeks we can restart the nastrogastic tube feeds. So next Tuesday officially marks two weeks. Once they restart her feeds and they are sure that she is tolerating them well, we will get to go home for a few days. We'll have to come back to the hospital the following week for chemo, but it will be great to have a few days at home in between.

Just in case anyone is wondering what the difference is between the TPN feeds that she is getting right now through her IV versus the NG feeds, the NG feeds are much more natural. The TPN feeds are more harsh on your liver and are used as a last resort. Ultimately, we want her to eat on her own through her mouth .. but we understand that her intestines are still healing and we don't want to rush things.

An interesting thing happened this morning. We have a roommate and her mom and I started talking. She mentioned that her daughter was also two, but she looked much bigger than Ashley so I asked when she turned two. We found out that both girls were born on the exact same day. Both girls were also born two weeks early via scheduled c-section and both girls were admitted to Children's Memorial and diagnosed on the same day. Gloria has Neuroblastoma, but like Ashley she was also Stage 3 when she was diagnosed. She's such a sweet little girl. Ash has been having a hard time in the hospital the last couple of days and when I had to step away to use the restroom for a minute I was worried that she would start screaming. However, when I came back I found little Gloria at her bedside sharing her Mickey and Minnie dolls as well as her piano.

I also wanted to mention that Ash has been having physical therapy almost everyday in the hospital. She doesn't love it, but she has slowly started to regain her strength. Today she lifted her head on her own and almost started to sit-up. She is also slowly regaining trunk control and has some movement in her left leg.

Thank you for keeping Ashley in your prayers and checking in to see how she's doing!