Day 16 - More Guests!

Hello all.  Today, we had a number of guests, from Amelia's classmate Hailey and her family, and Amelia's Uncle Joe, Aunt Erika and twin cousins Joe and Dan.

But going back just a bit, I posted this to Facebook as well, just a picture of the nightly feeding.  The bag hung, the feeding started, Amelia asleep.  I look forward to when I don't have to do it any more, but I am still glad that we have a way to keep our little girl fed.

Each night, we go through the same steps.... Once Amelia is asleep, we aspirate the NG Tube to make sure that it is in place (either pulling some stomach contents, or if that doesn't work, listening with a stethoscope, use a syringe to push air into her stomach).  Once done aspirating to confirm location, then fill a bag with 4 Boost Plus, hang it and thread it through the pump.  Once it is through the pump, turn it on, confirm we are using the same settings, and then auto-prime it.  Once the bag and feeding tube is primed, then plug it in to the NG tube, and start the process.  2 hours later, once one full Boost Plus has been fed, add the 5th and final one.  Total of 1800 calories a night.  It isn't optimal, I look forward to being able to share meals with my sweet girl again, but it is better than watching her waste away...  Still, it makes me a little heart sick, and I look forward to when we can put this chapter of our lives behind us...

Done with that, on to the fun of the day.  Amelia was up EARLY (a little before 6 AM this morning) and we were up and around doing things.  She was excited because Hailey was coming for a visit.  Eventually, she wore herself out a little and had to have a bit of a lie-down.  Then, when Hailey finally showed up, we got to give them the tour, and then me, Amelia, and Hailey went on a scavenger hunt.  Shortly after that, and some time in the craft room, Hailey had to leave, but we got an e-mail this evening saying she would love to come back when the weather was nicer.  We look forward to that.

Then, after a trip to New Seasons by daddy to get the princess more Apply Juice, our next visitors showed up.  Uncle Joe, Aunt Erika, Cousins Joe and Dan.  They had a "little" surprise for Amelia, a stuffed caterpillar in Valentine colors... Can you find it in the stuffed animals on Amelia's bed?

(psst... it MIGHT be a little tough to find... It is the red pink and white one....).  Needless to say, I am starting to think my mother is right and it will require a U-Haul rental to get all of Amelia's stuffed animals home...

Also, we had to have a picture of Amelia and her cousins, for posterity and all...

They are both 16, and right around 6' 3" or so... Just an inch shy of their father's 6' 4".  They get along pretty well with Amelia, and finished off the evening after we all went out to dinner by playing Monopoly with Amelia (thank goodness Katherine and I didn't have to play it with her... again... and again... and AGAIN!!!).  Joe, Erika, Joe, and Dan have since headed to their hotel for the evening.  Since they are close family, and since they made the trek down from Seattle, they are staying the night and coming to hang out with us part of tomorrow as well.

Last little bit of news, regarding how Amelia is doing.  Vitals were taken on Thursday, but we didn't ask Sherrill how Amelia was doing, but we should see the Doctor on Monday afternoon, and that should be well after Amelia has had her vitals taken, so hopefully we should know if she has made her goal weight.  She should be close if she isn't already there.  Once she hits her goal weight, then we start looking at when she will be ready to start the process of eating again.  This could be in the coming week, or the coming month... The experts are keeping an eye on her and will let us know when they think the time is right.  Until then, we will be here, waiting, hoping, and praying.  The end is in sight, sort of...  It is more like we can hear somewhere in the tunnel the sounds of the outside, though we can't quite see the light just yet... We know the tunnel opens up eventually, we just aren't quite there yet... Soon... very soon.

Thanks again to all the friends, family, and others who are keeping up with Amelia's story, who are sending gifts or cards, who are praying, sending good karma, good thoughts, all of that.  It is appreciated, it is felt, and we are thankful for every one of you.  Thank you so much.