Aug 30, Time for ear plugs

10:10 pm
Dang good day here at LPCH. Lindsey slept well last night, better than I did.

Her Berlin still alarmed 3-4 times last night.  They are all very confused as to why.  Every time the message says 'Check left tube and driving pump!' They have called Berlin and continue to check Lindsey out, and she is checking out fine.  Whatever it is, it only happens at night, when we are trying to sleep.  I'm not complaining, I just got some earplugs for tonight (really I did).  I will sleep a lot better when they have my child's life support system figured out.

She has also thrown quite a few pvc's, or irregular heart beats today.  It is something they watch pretty close, along with a lot of other stuff.  For some reason they were pretty concerned about it earlier today, but tonight it backed way off. So who knows?  Remember Stacy and I are just the cheerleaders and support squad.  We will let the doctors worry about the rest.

Had all the major doctors in here this morning looking at a potential blood clot. It's been over a month since the last clot, but they are still watching for them. This one isn't developing (yet), so false alarm, but it always makes you a little nervous when Katz, Rosenthal, and Bernstein all come in for a visit.

Still haven't put in the feeding tube. As long as she continues to increase her food intake they want to leave it out.  She is down to 20.3 Kilos, down from 21.7. In our language that is about 45 pounds down from 48 lbs.  They still believe the benefits of keeping it out outweigh the other, but it wouldn't take much for them to put it back in.  She really enjoys having the tube out, but it is such a burden to eat. If we didn't push the food down her with a broom handle, she would starve and not give it a second thought.

Having said ALL that, she really did have a great day. Went to both sessions of school, rode a bike around for physical therapy, she is happy and positive, went to the library, drank 4.5 pediasures and other food, and is currently jabbering with her nurse and showing her pictures of our home in Oregon.  I am so grateful for the doctors and nurses who help her have a good day while watching so many things about her. We really do have angels watching over her, from Grandma Roach and Mrs A to wonderful doctors and nurses.

Sierra brought home a paper from school regarding 'Math Night' on Sept 13.  A required event to attend.  Wow, you could see the excitement just bubbling out of our oldest daughter. Hang in there Bug.

I am planning to head home next week after Gage's appointment and Sierra biopsy / IV infusion on Wednesday. Be there to check in, go to the office, gather up some work, and get back down here.

Excited to have Jake and Wendy and their gang here this weekend. Hopefully Lindsey will continue to feel good and we can all have good time.  Thank you for your comments, we read each one.

 Lindsey and Grandma playing 'Trash', and having a good time.

 

 Her ordering from the menu. Yes this was a big deal. She ordered apples and peanut butter, gummy bears,  a pickle and water. She took a few bites of the apple.

 This is it, Room 3241.