Christmas 2010

Well, we had Christmas.  But I'm a  loser who doesn't really think ahead of time about things like batteries.  We got a few pictures before the batteries went dead.  

The girls all got musical instruments this year.  Story got a keyboard, Lyric a guitar and Cadence got a drum.  

They also got a new craft table.  

I was really surprised by how late Story slept.  She didn't get us all up until about 7:30.

Story was showing off her new candy cane lip gloss.

The girls had a good time trying out the keyboard.

One of Cadence's favorite gifts was a He Man DVD (thanks Jones family!).

The other girls moved on to other presents, but Cadence was still mesmerized by He Man!

They got their gifts open and were checking them out and she was still checking out the He Man DVD!

Grammy and Bob came to town on Christmas day.  

We all enjoyed a beautiful white Christmas.

 It was a first for us all.

Joey Needs Medical Attention

Story is on TPN and lipids for her nutrition here at home like she was in the hospital.  Tonight, Lyric was doing some major medical work on Joey the gorilla.

She got a bag and filled it with scrapes of paper for his TPN.  She connected two straws to make the tubing.

  

He had to have a dressing on his chest with tubies for the TPN to hook up to. 

 He also had a feeding tube.

Luckily Joey is doing much better now.  He is off of the TPN just like Story.

Home Sweet Home!

Today was the big day!  Story was released from the hospital.  We were there a total of 42 days.  She had her bone marrow biopsy this morning and we packed it up and headed out this afternoon.

She got tired of waiting on Daddy to load us up, so she decided to take a seat with all the stuff.

 We filled up two carts like this one, plus Devon and I had both of our hands full.

 We asked Ms Amanda, the child life educator, to get our picture before we headed out the door.  It was very strange all being in the car together for the first time.

 Story Bell was happy to be home!

Happy 5th Birthday Story Bell

Today we celebrated Story's 5th birthday.  We really wanted to be able to celebrate at home, but it just didn't work out.  

She and I decorated the room before Daddy and sisters arrived.  Only being allowed two visitors at a time made things kind of tricky.

Cadence REALLY wanted to go in first, so she came in for awhile and gave Story her present.

Story wanted to do her cake with Daddy and Lyric, so Cadence and I went out and let them come in.

They had cake, opened presents and played.

 Lyric and Story did a photo shoot.  Lyric was the photographer.  She told Story how to pose.

 Here she is with Birthday Bear that Daddy gave her.

 In this one she has Birthday Bear, the baby doll Cadence gave her and the Tiana doll that Lyric gave her.

Daddy and Lyric accompanied Story down to have her X-ray (she gets one every Sunday).  Overall, I think Miss Story Bell enjoyed her "party."   It was snowing pretty hard outside, so Daddy and sisters left a little earlier than they had planned.  They didn't want to get stuck at the hospital.

Happy Birthday Big Girl!

Love This Picture!

Lyric came to visit today.  i just love this picture of them!  I love the way Lyric looks so grown up, with her blue fingernails and the way she is holding Story's head.  Story looks so small in her sisters arms:-)

Around and Around We Go

Story Bell has started a new habit.  She likes to be pulled around in the wagon at night.  We walk for miles around the pod.  I really wish I has a pedometer  to wear because I would love to know just how far we are walking!  

 She has even fallen asleep a few times.

Felling Better and Having Fun In the Hospital

Story Bell was feeling better today.  This morning the doctors diagnosed her with GVHD.  They started her on steroids and said the throwing up should stop soon.  Aunt Becky sent her the cutest tea set ever!  She had a tea party with Mimi J today.

 They had apple juice and Teddy Grahams.

 They took time out to pose.

 Baby Jamie joined them.

 And Brown Bear was there too.

 Story ate part of a Teddy Graham.  The first food she has had in about five weeks.

 Cheers!

 She drank her apple juice.

 Nurse Jessica joined us for some tea.

 Dr. Frangoul came by and had some tea too.

 After the tea party, Story and Mimi J had to get their surgeon gear on and play a little operation.

 Even surgeons can take a break for a picture.

She did throw up a few times today, but she was feeling much better!

Story's New Tube

Story added a new tube to her collection today.  This one is coming out of her nose.
It was snowing on our way down to the OR this morning.  She was excited to see the snow!
Here we are about to get on the elevator.
 
 I tried to take a picture of the ceiling. There is a huge duck surrounded by fish. (It looks much cooler in person)

 Miss Story Bell before the procedure.

 We did a little cuddling.

 I took this one after she was snoozing tonight.  I wanted to do this post, but forgot to take one while she was awake:-)

Cadence and Story Skype

Last night Story was on Skype with Daddy.  He had to leave the room for something and Cadence walked in.  Her conversation with Story was so cute!
Cadence: Hi, Story.
Story:Hello.
Cadence: I love you, Story.
Cadence: Are you not hooked to your polee? (She couldn't see the IV pole)
Story: I am.
Cadence: Are you ready to come home, Story?
Story: Well, Cadence, I am ready to come home, but the doctors aren't ready for me to come home yet.
Cadence: Story, can you help me send you a picture? (They recently learned how to chat on Skype.)
Story: tried to explain what she needed to click on to send a picture.
Daddy came into the room to help.
Cadence sent Story two clocks.
They all chatted a little and then Cadence sent two more pictures to Story.
Cadence: Story I sent you two cupcakes. (They were actually two mugs of beer.)
Cadence then showed Story the ornaments that she painted.  One of them was Rudolph the Snowman.

Story has been having a good time with the Elf Yourself website.  This is one she did with the whole family.

Ups and Downs of Getting Better

Story Bell's morning started off kind of rough.  She didn't wake up in a very good mood.  The doctors have decided they think she is going through withdraws from having the pain pump removed.  It is normal and nothing to worry about.  We just may have to deal with some mood swings for awhile.

She eventually perked up and did some sewing with Daddy.

He didn't know what he was doing, so they were pretty cute trying to figure it out together!

They decided to do a little bowling, but then they realized the sand moving around in the pins sounded kind of like maracas. 

So, they made a little music.

The pins also made good swords.

This afternoon Story Bell got pretty sick!  She had mucus in her throat and she was having a really hard time throwing it up.  She got some Benadryl and some pain medication.  She eventually finished throwing up and fell asleep.  After her nap, she woke up refreshed and ready to play!

We have Ms Megan, one of our favorite nurses, tonight.  Story wanted to Elf herself, so she took a picture of Ms Megan, herself and Ducky and picked a dance.  They watched it once and then danced to it the second time.  

Enjoy!