It's my night with Linley at the Ronald McDonald house here in Atlanta. Because both her and Chad are out of class for the Christmas season we are doing a lot of trading off of the girls...it's good that way, no one becomes too spent, hungry or bored. Time with each girl is so different but still so special. Have I mentioned what amazing girls I have lately? Or today? They really are.
Piper continues to do well. We are seeing her slow down as far as energy resulting in some mega naps. She is not eating but thankfully the NG tube and the TPN are intended just for this reason. While I don't really consider it throwing up, she is bringing up a lot of clear, thick mucous which we assume are just signs of the mucositis beginning in the GI tract. She has her nightly oatmeal bath, she does her mouth rises four times a day and she loves when we put lotion on her little legs and body. Each diaper change is done using mineral oil and cloth instead of alcohol bases baby wipes and each diaper change also ends with liberal slathering of sensi-care. All of these steps are taken to prevent problems with bacteria and/ or germs...our biggest fear until she engrafts and we see white cells here for the fighting.
Linley is also doing well. I know she is hearing a lot of what is being said over her head when she asks how Pipers "electricity" (radiation) is going. Tonight we were able to visit with one of my favorite oncology moms and her daughter Lindsay who is +36(????) of her own bone marrow transplant. They are currently staying here at the Ronald McDonald house in one of the transplant apartments and it was good for Linley to go see how that looked and what we have planned for Piper when she engrafts and is able to leave the unit. Plus, Lindsay is just an amazingly cool 12 year old who happens to share Linleys birthday so I feel they are destined to be friends, much like myself and Sara.
Tomorrow I plan to sleep in with Linley and then we will do the clean up, pack up and check out here. I'm thinking maybe a movie or a park for the afternoon and then after Piper is done napping I will relieve Chad and he and Linley will head home for the weekend and for Linleys basketball camp on Monday. Chad doesn't start class until the week after so we will continue to do the two days on and two days off until next week in which we will do me at Egleston with Piper Monday thru Friday and then Chad there with her on the weekends. Hopefully Piper will engraft quickly and will be moved to the Ronald McDonald houses own transplant apartment of which Linley will be allowed to join us and my little family will be together again...
...one sweet day, prayerfully not too far away.