Sunday, September 06, 2015


Psalm 130:5   I wait for the LORD, my soul does wait, and in His word do I hope.

Last night's sleep was a little interrupted: Ruby's IV bag ran out at 3AM and caused the alarms to go off, which woke us both up. I finally got her down to sleep again by 4....just in time for the 4AM vitals and blood draw. She normally sleeps through that, but she was not deep into her sleep again, so it was close to 5 before either of us saw any more sleep. The good news is, she slept until after 7AM.

Today was more books, more blocks, more speech therapy (I've got nothing but time!), and more oral meds. That part just sucks. Ruby has had to take several medicines (chemo, Zofran, Bactrim...) orally each day. Sometimes it's twice a day, but today was three times. In the beginning, it was mildly bothersome to her, but we are at the point now that she sees the nurse with the oral syringe and starts crying and says 'nooo'. Yup....I get to hold her down while the meds are given to her. That is always fun. I really really really don't like that part.

Ruby drank a bunch more water today than she has been. She ate plenty of calories too, though she is still struggling to enjoy the same foods she used to. Today's success included peanut butter, crackers, mashed potatoes, a little bit of meatloaf, and raspberries.

5PM marked the end of Ruby's IV chemo for this round...hip hip hooray!! She will still have blood draws each morning so we can watch her counts; her white blood cell count should drop over the next week, bottoming out on day 10 (from the beginning of chemo). So she has one less thing she is hooked up to, but unfortunately she is still hooked up to a tube. Ruby will receive fluids through the night and then 'more', as the doctor put it today. I think that means the same thing as 'we'll see'. I will be pushing for her to have some time off of the IV over the next few days. I know she needs it and it will make her feel better, but my girl needs to walk. She needs to explore. She needs to play without me telling her 'no no...don't move too fast/too far/too high/too low'.

This last week has not been as hard as I imagined, mainly because Ruby is still healthy. Her appetite is odd, and she has had a few more naps than usual (and then there is the roid-rage), but in general she is still the same. The hardest part has been the anxiety over her chemo and IV lines. She is hooked up via her port and I'm constantly stressing out over her pulling too far away from it or rolling one too many times in bed, or doing anything that could compromise the port or her bag of chemo. Something as simple as me brushing my teeth requires me to put her inside of her crib and try to coax her to just sit still because if she jumps around or moves around, the tubes get all tangled and short.

Lehr is with Ruby tonight and will be most of tomorrow. That girl loves her Daddy, and as not ideal as the circumstances are, I am so grateful for this one-on-one time they are getting. I am with Ruby so much during the week when the kids are at school, and during therapy and at Gigi's, but Lehr doesn't get to hang out with just her that often. That has been a gift, for sure.

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