Tomorrow I will FINALLY get to see my girl. At long last Nathan and I are over this cold. I hear she is doing well, improving in small ways each day and I can’t wait to see her with my own eyes.
Speech therapy came today and performed a swallow test which showed that she is not quite ready to swallow liquids on her own. They gave her some toys to chew on that will help her with that reflex. I had no idea she would need so much therapy to re-learn how to do things. I guess I expected that it took longer to lose those abilities. She will have to learn how to swallow, drink, eat, walk, use a fork, etc.
Tonight we took the boys out to eat, something I usually enjoy, but ever since Phoebe has been away from us I ache each time we have to request a table for five. She is so obviously missing from our family and that revelation sits like a heavy rock in my gut each time we go out somewhere without her. I see a little girl her age and I physically hurt, I pass by the little girl clothes in the store and turn my head. I’m weary of that empty feeling. Tired of it hounding me. I was thinking tonight that even if she was at dinner with us, she can’t swallow, can’t eat..can’t walk. I feel like I am losing her in increments.
I might be extra emotional tonight because I haven’t seen her since Friday and maybe I will feel like it’s all turning around when I see her in the morning, but right now I just miss her here with us, living a normal little girl kind of life. I miss being free from “what if’s” and having the luxury of a mind not consumed with medical details.
Tomorrow is our meeting with the ICU and Oncology doctors to talk about where Phoebe is in her healing process and where we need to go from here. This is not a chemotherapy meeting to discuss the details of her chemo treatment specifically, it is more to get everyone who is working with Phoebe on the same page. She has several teams of doctors involved in her case: Oncology, Endocrine, Infectious Disease and of course the ICU team, so it’s important that good communication takes place between all of those and everyone works together toward the same goal.
It looks like Phoebe could be moving back down to the Oncology floor as soon as this weekend if all goes well, and that would be wonderful! We love our ICU nurses and Phoebe has some very special ladies taking care of her right now who know her from before when she had her brain surgery in early January. We hate to leave the nurses, but we won’t miss the ICU floor. We love the HEMOC floor (Hematology/Oncology) because we have fridge space, comfy couches for sleeping and we can have food and drinks in our room. It’s just easier to feel at home there (and we have great nurses there too!).
Of course, ultimately we would love to have her at home for a few days and we are praying for that opportunity soon! We have gotten to know some of our neighbors this week and are really blessed to live in a great neighborhood with such wonderful people. People have been bringing food over, inviting the boys to play and stopping by just to chat. We feel very welcomed here.
I can’t wait to post pics tomorrow of Phoebe awake and playing. I am looking forward to seeing her really awake for the first time in weeks! Here’s to a wonderful day with my girl!