Day 15 (only 809 days to go)

We get to go home tomorrow!

Last night was a typical night with Kennedy – up every two hours for a feeding, like a newborn.  Each time a tech or nurse would come in to administer antibiotics or get vitals, Kennedy would pop up and say “I’m hungry”.  Her stomach is huge and hard.  It looks very uncomfortable but that doesn’t stop her.  Each time (like every 40 minutes) Kennedy wanted to eat during the day, I made her walk down the hallway to the Bear Necessities room that housed the refrigerator so she could get a little exercise. 

We did a lot of arts and crafts today to keep her distracted. We also started working on thank you notes for all the generous gifts.  I’m exhausted just thinking about getting them to all the wonderful people in our lives.  

A lot more hair fell out today, it’s about half gone.  I’m surprised at how quickly it is happening and K is upset.  She keeps saying “But mom, everyone is going to think I’m a boy in a dress”.  I told her that was nonsense.  We would get her some fancy earrings, a cool scarf or wig and she can even wear make-up if that will make her happy.  She immediately put on the hat Christina knitted for her when Dad brought it this evening.

Kora is getting her hair cut tomorrow and we found a place online (hatswithhair.com) that will create an “underhair” that Kennedy can wear with hats or scarves and wouldn’t be as hot or itchy as a full wig.  I doubt she will wear it all the time but it would be perfect for a birthday party or anywhere she’s not 100 percent comfortable.  Options are good.

Infectious disease doctors came in and noted they were happy with her progress.  Dr. Manera also came in and said she was ready to go after tomorrow’s chemo.  We can’t wait to get her home.  A home nurse will be by to set up the IV administration of the antibiotics.  Right now she is getting the drugs every 6 hours.  Kennedy will receive one more blood transfusion this evening to make sure her counts are ok to go home.  Her hemoglobin was around 7.

Gene and I had a changing of the guard at around 7:30pm.  He could already see the changes from yesterday (puffier cheeks and less hair).  It’s hard to watch her change right in front of our eyes, I wonder how Maddox will react. 

Speaking of Maddox…I came home to a wonderful surprise.  Maddox wrote us a note (based on the blog he was helping me write the other night).  I asked if I could post it and he said "yes.

Written by Maddox:

Dear family

My sister is in the hospital.  I got a little sick to.  I’m home from school.  It is not fun being sick.  My mom is going sleep at home like my dad did last night.  To day I saw a cool movie it had sord fighting and that movie had soss in it.  My sister will be home tommoaow.  I miss my mom and dad.  Thank you God for making my little sister get out of the hospidle.  I love you Kennedy.  My grandpa called today and said that Kennedy was fealing good.

Your friend Maddox