First whole day home

Today was a little better as far as giving her medicine. It didn't feel so hectic, just a lot of pill crushing and mixing. I have a list of the meds shes supposed to get in the morning. As I draw it up, Abel gives it to her, and I cross it off the list. All day she was exhausted with almost no activity level other than going to the bathroom and eating. (At least shes eating) She took a mid-day nap around the same time as Sabrina and I was able to run to the store to pick up some thing. Around 5:30ish she picked up a little bit of energy and played with some stamps and walked around a little bit. It was nice to see my princess acting like herself. Most of the day shes been so fussy and seems miserable most of the day. I wish she felt better.

Michelle stopped by today which was nice to see someone in the outside world. As soon as she left we gave Isabelle her meds. When we were brushing her teeth and giving her mouth meds she threw up all over Abel and all over the bathroom. My dad and I gloved up as my mom took Sabrina upstairs. Abel jumped into the shower quickly to rinse off. (Not supposed to get chemo on our skin) My dad took her clothes off and wiped her body off. She was crying the whole time. I wanted to give her a bath, but her wound from the spinal tap isn't healed. It was still in her hair so after Abel got out of the shower he helped hold her over the tub so I could just get her hair. Her hair is really dry and is starting to "shed" a little more than normal. She was very upset that she threw up and asked me, "mommy what happened to me." Was a little sad, but I turned it into a funny thing that she threw up on daddy, which worked.

I can't wait until she feels better and her energy picks up. She just wants to lay down all day and have me lay with her. I'm just lucky that she is taking everything, so much better than a lot of other kids. Even though she is doing really good considering, it is so hard to see her falling apart.

Medicines we are giving her:

• Sulfa-5 ml 2X a day for pneumonia prevention (only on Saturday and Sundays)
• Zofran- 2.5 ml every 4-6 hrs. for nausia
• Tylenol #3 (with codine)- 5ml every 6 hours as needed
• Miralax- 8.5 grams as needed for constipation (caused by chemo)
• Pepcid- 1 ml 2X a day for a week while on Dex
• Dexamethasone aka Dex- 3.5 mg in the morning and 3 mg in the evening (steroid)
• Nystatin- 4 ml every 6 hours in mouth to prevent thrush/sores
• Lidocaine- numbing cream that I have to apply to her port an hour before we go to the clinic so they can poke it without it hurting her