A good day, considering where she is in the chemo cycle. Her levels are dropping, so she probably doesn't feel very well and she's super tired. She's taken several naps, but is mostly just being an iPad Zombie. They have her scheduled for a blood transfusion soon to replace hemoglobin. I wish blood donors could know what sweet little girl is getting their blood (I know that's not practical for many reasons, but it would be cool). BTW - donate blood! She's A+ =)
She's still having an issue where the excess mucus is making her gag (which makes her puke). That's happened a few times today. I asked about the patch that's behind her ear (that helps control secretions and nausea) that she keeps ripping off. They said at CHOP, for pediatric patients, behind the ear is the only option due to absorption considerations. So they just keep an eye on it and replace it when she gets grabby.
No therapies today - she's just way too tired. But she has really enjoyed her new Peppa tea set sent by a Facebook friend! She doesn't like that it makes noise, but she loves fake-pouring tea and giving Peppa a drink <3 This is really the first time I'm getting to see any of my kids play pretend (since she's my oldest, and she had JUST started getting into this before the hospital). So it's really cool to see her using her imagination <3 Oh, and we could not figure out what the heck she was pointing at, but she was insistent that she wanted something over by the TV. We went through all of the obvious toys... and then realized she was pointing to a random tomato on the sink -_- Apparently you can pull it apart and put it back together with velcro, and it's just the best thing ever. So... Julia has been hanging out with her fancy Peppa tea set and a tomato.
I had my PT consultation for my back. It went well. Just sitting up straight for a solid minute is enough to set my entire back on fire, because apparently I've forgotten how to use those muscles. But I explained the situation, and that my immediate goal is to be able to bend over the hospital bed without wanting to die. We agree that this therapy (this time without the restrictions of being in the third trimester) has a good chance of being successful, so I start next week. 2x a week. Next week I also have an appointment with a therapist who specializes in PTSD, so we'll see how that goes.
Right now Reed's setting up for a trach change and my anxiety is starting to rise. I'm 30% confident I'll stay in the room... Oh, the training nurse is going to sit next to me and "talk through it". I can't tell if I feel supported or trapped. TBD. Update: OK I stayed in the room. Out of nowhere I heard Reed counting down for the switch and it was too late to run away. It actually went really well. It was useful to have a nurse sitting here pointing out things like what the monitors were doing while everything was happening. Usually the nurses are involved with the change so they look so serious and intense (and my brain decides that means she's dying). So this was nice.
Pic tonight - this is how the EXHAUSTED baby fell asleep! Unwilling to let anyone put her iPad to bed while she's snoozin' <3 And video in comments: we were talking about the oral swabs (which Julia hates) and so we asked if she'd like to brush her teeth like a big girl again. She used to love brushing her teeth. We happened to find a PEPPA tooth brush and she was very excited =) Hopefully we can do this nightly and she might eventually get it into her mouth!
YouTube: https://youtu.be/YiyTlRhhM8w .
. ********** ~~ Julia Adams ~~ *********** ************* Official Links ************* **************************************
Car Magnet: https://tinyurl.com/y4nxr3lr
Where I buy Julia's CBD Oil (CBD BioCare 3500mg bottle): www.naturallywellforlife.com || Coupon code: danaboyd
Chordoma Foundation: www.chordoma.org
If you're new and want to know what's going on, my first post about Julia was on October 31st. You can find them all on my Facebook page or Julia's website <3