Late post for Thursdays clinic day, but I know we had lots of prayers being said for her Wednesday evening because things turned out about as well as possible for her fasting. It was hard to know what to think from 1:30-4:30 am when we were up feeding her and trying to put off her sleeping meds so she would sleep until we had to leave. Turned out it was worth every second of those 3 hours! She went to sleep at 4:30 after we gave her all the drugs we could to help her sleep and slept until 8:45 just enough time to get her SUPER SOAKED diaper changed, a quick sip of apple juice from her Caprisun (the only thing she would even look at for clear liquids) and head to clinic. We even made it about the whole car ride distracting her with baby signing time and a fabulous sticker book a great friend of mine sent her!! It was truly amazing and then she even did amazingly well as they bothered her the next hour for her vitals/blood draw and Dr exam. She was pretty upset after she got out of sedation I'm pretty sure she just thought she was starving to death so luckily we had many options ready for her because NOTHING would do except for her cup o noodles which she ate a full one and probably half of a second before we could even consider heading home. She even declined her one vice-American cheese. It was pretty shocking, but she made up for it after she was satisfied with her noodles.
Her levels looked great though and she made her way through yet another sedation/spinal tap and bone marrow aspiration just like a champ. She is truly remarkable, I marvel at her strength and watching her endure all these awful drugs and procedures and realize what a baby I've been my whole life! I hope she can read this one day and realize how amazing she is for getting through all of this.
Weight: 34.0 lbs
WBC: 9.2
Hemoglobin: 9.7
Platelets: 394,000
ANC: around 4.1
These are a couple pictures from Tuesdays clinic visit. We didn't get any Thursday we were just trying to keep her happy before sedation then feeding, feeding feeding after!
As soon as I snapped the picture she decided to drink the leftover milk in her bowl!
Our pretty girl!
After her medicine...a pretty regular occurence now.
This is how she gets her aggression out....chewing and ripping on her blanket. We just hope she doesn't rip her teeth out!
Jace does the same thing with his blankie! Bites down hard and pulls it out! Crazy kids!
ReplyDeleteI'm so glad to hear that the fasting went well. It's important to have little victories like that.