CJ's Thumbs Up Foundation

Waiting for word from the Docs

She has had a very good night with only minimal "wakefulness". Mommy was definitely sick of watching Diego last night but it made her happy...the things we tolerate as parents!
At the moment (8:15 AM) she is still snoozing away peacefully. We are waiting for the doctors to call her for another head CT. Assuming everything goes well, we will begin the discussion about removal of the ventric line. This is just part of the seemingly endless process that counts us down to home (we hope). We will also be able to give her hair a REAL washing when the ventric comes out. Oh joy!
I want to give a small shout-out to the Shultz family. As part of the wonderful care package they brought for us, there was a book of "grown up" puzzles (crosswords, etc.). This has been a great source of amusement for Roger and myself. A good way to pass the time.
I personally slept through Roger's radio appearance so I hope it went well.
On for another busy day.
Rachel

Lines removed!

Another very busy day. Her head CT looked great so they came to remove her ventric line today. One less tube to conten with. She also got a bath and a great hair washing! She is resting peacefully now.
Occupational Therapy came to work with her earlier today. That was a lot of hard work. I think I got a taste of how hard therapy is going to be for her. It was definitely tough for her to move that left side and coordinate bilateral movements with her hands. And of course, in stubborn Charlotte fashion, she fought finishing the task. She knows how hard it is and I am sure it is very frustrating for her. Lots of tears and a very patient OT.
We also had a visit from Dr. Robinson, the rehab specialist. Based on the discussions he has had with the team, they continue to lean more towards outpatient therapy. This will, of course, mean a lot of work but we will be working with a great team. She will need a wheelchair and perhaps a ramp at home (a project for grandpa?). She might need a bed with rails at home but we don't know yet. There is a lot of question about how much mobility she will regain on her left side. She may always have some weakness but she should be able to regain some if not most of her mobility.
Discharge is still looking much like Monday or Tuesday.
It seems that on the food front, I think we have things well covered till then. There is plenty of food in the freezer at home and we have at least a couple meals left to eat from here at the hospital.
I will be setting up a Care Calendar in a few days that will have information about specific needs we may have for child care, meals, errands, etc. I will let everyone know when that is ready and you can jump in to help.
All for now...gotta go grab lunch and caffeine...
Rachel