We’ve had a successful last few days. Well, in some ways. Since my last post we have given Madeleine the new pain killer each night. No, she has not slept better. However, she IS moving better/more in the morning. So after our appointment today, Dahlia told us to start giving it to her once in the morning and once at night before bed. That should help her to move more and strengthen her muscles again.
We have physical therapy scheduled for Monday before her labs/clinic visit. So that will be a very long day at the hospital. Then we go in for more chemo on Tuesday with an overnight stay at the hospital.
We have been receiving meals from friends for the last couple of weeks and it means so much to us! Thank you to all of you! It is more of a help than you could possibly know, especially with these long days at the hospital and a very very tired mommy.
What else. The sleep. She is still not sleeping, so we have adjusted how we give her her meds before bed time and are going to step down the steroid slightly faster than was scheduled, so she will be off of it 4 days sooner. They said that the longer you are on the steroid, the worse it makes your sleeping. So the sooner she can get off of it, the better. I am exhausted, but Alex doesn’t work for a couple of nights here, so he can help a bit.
She is still eating like a maniac and gaining weight, we think. They started out weighing her with clothes on, so now it’s all screwed up since clothes change, diapers get heavier, etc. Starting on Monday we’ll be doing naked weight checks for more accuracy.
The Nulasta they gave her to help her white blood cell count has made it SKYROCKET! She is still close to 40,000 for her ANC levels, so we have still been giving her Oxycodone to help with the pain from that. It’s better than a super low ANC, at least.
As for movement, she is doing great, as long as she has that Neurontin (new pain med). In the mornings when we play on the floor she does this: Click Here! 😀 That makes for a very happy mama!!
The hair status is sad. It’s almost gone. She has a bald spot on the back of her head and it is severely thin everywhere else. Starting in the last day or two, we have been using head bands instead of her cutie pie hair clips. The good news is that she looks adorable with the headbands, too. The ladies at the clinic today were fussing over her like crazy.