An event worthy of a post

Reese is officially tubie-free!!  (no more central line) The nurses refer to them as "tubies" when talking to peds patients.  I was nervous a few days before the line came out because Reese had been a little grumpy and had been having diarrhea/vomiting more frequently after her infusion on Tuesday.  I was afraid that she might have nausea after anesthesia as she has in the past.  Strangely,  she hasn't!  In fact, she has actually been happier since the line has come out.  She only required 3 doses of pain meds and she has otherwise been great!

She has been active and bearing weight on her arms and legs more.  Actually straightening her legs and standing (while we support her).  We have been able to get her feeding volumes up (the amount of formula she is getting) as well so that is exciting.  We are now out to monthly clinic visits and she has been turned back over to her neuro-oncologist (not her stem cell transplant doctors).  The preliminary immune results came back and the immune cells are present but in low numbers.  We don't have the results yet that will tell us how well the cells are functioning (which is really the important part).  It's possible that some of the restrictions could be lightened (which would be great), but we won't know that for a little while longer.  In 2-3 months, she will have to undergo more testing to see how she is recovering.  In the meantime, we have to keep her from getting sick (by precautions and prayer!)

Another fantastic thing is that Reese's hearing was normal (for the pitches/frequencies tested by this particular type of test).  She had the same test after her first cycle of chemo and everything was stable after 4 additional rounds plus a stem cell transplant round.  There was a 25% chance of hearing loss so we are so thankful for this. This is one of the things we have prayed for.  Reese LOVES music and we hoped that she would be able to fully appreciate it someday.  She may still lack some of the highest pitches that weren't tested but none of the pitches that are required for speech or every day interactions.

After Reese's line was removed, she had to leave the bandaid in place for 2 days.  Tonight, we got to remove the bandaid and she is officially adhesive free for the first time in 10 months! Whew-hoo!!  She still has her Gtube for now and her shunt (which is completely under the skin).  She has to wait 5 days to bathe or submerge the stitches (there are 2) but we can't wait to bathe her in a tub (and not with special wipes!)

Below are a few photographs documenting some "lasts" of the week and a few "firsts"!

Last flush of the central line the night before surgery

One last night with my central line!

Now you see it...

Now you don't!

First time Reese "helped" put Charlotte to bed 

The big reveal (the most exciting bandaid removal ever!)

Reese takes a peek....

And decides she LOVES it! :-)