Walking first time...

Bailey hadn't felt the ground in days. One of the things she had to do before going home, was walking. When Ashlie came to visit in the hospital, she was obviously inspired when she brought bubbles, cause it helped!!! Here's a cute video of Bai walking for the first time.

Wednesday Morning Walk.

She wanted to go on a walk first thing in the morning...so we did, and obviously I wanted to document it. Don't you LOVE her faces???

Treats!!!

I decided that we need to have a desserts party, since we have recieved so many desserts!

Bailey didn't even give me time to check out these plates of cupcakes, she immediately took the whole plate of htem over to her table, and started sticking her face in them. Silly girl!!! I convinced her to just take one and put it on her own plate. But they are good!!!

Thank you all my friends and neighbors for the treats :)

In the Car.

Finally, in the car to come home!! This is from 07/27/2010!
Happened to be my Dad's Birthday, as well as my parents anniversary. Sorry you guys that I failed to get you anything since I was a little preoccupied, but Ms. Bai got out of the hospital for you, and thats pretty good right?! She was excited to be in the car, but that's been the last time...We're hoping she'll want to get in the car again soon!!!

This is driving thru downtown Salt Lake. It was so cute how she was just so interested in everything going on.

Funny Kid...

So glad it was a kids hospital and they let kids do what they want...
On her way to get an Echocardiogram, she decided she wanted a banana, and that she was gonna walk and do things her way!
So funny.

Make a Wish

Outside of the hospital, they have this garden area, wish a couple wishing well, and some benches and flowers. Real cute.
So we made some wishes. Here's Bailey making hers. She said she made it to get more Bubbles. Our friend's Ashlie & Liam, had given her some earlier, so I guess her mind was stuck on that. I'm sure you can guess what Dave & I's wishes were...Ours came true ;)

The Alligator.

For some reason, Bailey called the Elevator, an Alligator. On Tuesday (the day we got discharged), she loved to ride it, and look at the fish that were out the window of the Elevator. So cute.

Bailey's Favorite Nurse

This was the nurse that we had for 3 days 12 hours a day. She was so kind and patient, and knew the ins and outs of Bailey. Bailey loved her. It was so fun to be able to see her on the way out, and say goodbye. She was just coming in for a nite shift. Bailey has asked to go visit her, so we'll have to try and fit that in. If you're ever on the NTU at Primary Children's, which I HOPE you are NOT, I hope you get Cassie! She's awesome :)

HI!

This is Bailey saying Hi! in sign language. We know the "I" isn't corrected, but she insisted thats what it was going to be that day. This was Tuesday (7/27/10) just a few hours before we were going to go home :) I never thought that when we were teaching her sign language as a baby, that she would still love it today. I LOVE it!!!

The Names...

The Names of the tumor that were passed around by the oncologist that called me yesterday are:

solid aneurysmal bone cyst; giant cell reparative granuloma

We hope to find out more, but that might a few weeks, but basically she's fine, and we are loving just playing games, and coloring and focusing time playing with her, and taking walks. She is LOVING the extra attention from friends, neighbors and family stopping by. She's still a little worreid to get in the car. She has had some bad dreams.

I still wake up concerned that I'm in teh hospital. I guess I should hang some things on my wall, since they're just plain white. But still...we're sooo happy to be home.

I still have some pictures to post, and some video, but I've been busy catching up on sleep, housework, and playing with my little Bailey. We have lots of Thank You notes to write too :)

We look forward to her next surgery, to get all this over with and done, so we can move on with her healthy little life :) She is the best little girl, I could've ever asked for.

It's....

It's Benign!

Those of you that don't read my facebook, It's Benign!! :)

We couldn't be more thrilled!

I have the exact words on what it is, but that doesn't matter right now. I'll post that when I'm done celebrating. Just thought I'd share the good news.

From Bai

h bbbbbvvvvvvvvvvvvvvvvbbbbbcccccxxxxzz bgyydggfhghighryh9fu9gufjtj fhvihijytykhojffjobjmcvnnbvnbgdfjxgixfijfgjhhfyfyfhgfgjjrfjrtuccccccccjnvvncvbbfhfhhfdrdfhhfffhffvn bbnbhbn nvjbjbbgvhgnn jgghgiiuuuuuuu7yvb887587rtgjtirghcvmfxkjkkkkjljj xkcdthfhdrdv fgdxjghfhbfghfci fjhfihvhjvihhhhjgu666668yu67ggx bbfvduturtyyhtfyr6yt7s ydydgughhdughfughfhuhgh8h8ikfihuufuhgiyjhgy v gvfgcvfgifhijhijgitjyh bcgcvvvvv

Translation:

Thank you for all the presents and prayers.

I love you all so much.

Now I can play and when I do I can play.

And every nite I can come to your house a little while.

When that will be you will watch Kronk in my room. You will be Kronk.

You will turn into a llama. Then I'll have to watch it all by myself.

Love,

Bailey

Another GRR

They want to change our oncology appt yet again.

So, when we left yesterday, they told us our appt was going to be on Monday (Aug 2nd).

I got a call this morning, saying that they were going to need to change it to next Wednesday! I can't wait a week! I'm already losing it as it is.

I told the office, that my husband, won't be happy with that, so that he'll be calling back to make the appointment.

Apparently the doctor won't be in that day.

I'm not sure when the oncology appointment will be now :(

CT SCAN of the Tumor

I know it seems a bit weird to post this, but we have a CD of all the x-rays that we had done. That sort of stuff, highly fascinates me for some reason.

This is the first view we saw of it, as they were telling us it should come out first thing in the morning.

We were just in crazy crazy shock. (We still are in fact...) I haven't looked at the rest of the things on the CD that we have, but this was just too interesting to not share.

 

Home

We are HOME!

I'm just so excited to be home, I can't even explain it.

I came home and just cleaned up, and started laundry, next is throwing away expired food in the fridge. :) Yay me!

Bailey keeps saying how excited she is to be home, and then asking me if I'm excited.

Heck yeah I'm excited little girl!!!

Bailey Pooped!

Which was one of the final things we needed to go home...

Our oncology appointment has been postponed AGAIN.

BUT....we're going home, RIGHT NOW!

Or in the next hour or so, or whatever. I gotta get off of here, and start packing, and get bai dressed!

WOOHOO!!!

YAY!

BAILEY WALKED!!!!

The Good & The Bad.

Good News...
Looks like we'll be going home today, sometime. Bailey has to meet a few criteria for that to happen, but she's just as anxious to go as we are, so I'm sure if we bribe her with home, it'll happen!

Bad News...

Still unsure what it is. It is not the Histi----word I said previously. Well at least they don't think it is. I believe the surgeon said that oncology has ruled that out. Its now some sort of Sarcoma. They are just trying to figure out what kind.

We will have an appointment HERE, with oncology tomorrow to go over things. If they postpone it, I will be one ugly mother. I just want some answers!

Bailey will have a CT scan of her Chest and Abdomen later today since oncology has asked for that.

Her neurosurgeon team, Dr. Walker and Dr. Bollo are great. We see Dr. Bollo here 24 hours a day, our first meeting wasn't so kind, as he abruptly woke me up at 7AM, and I couldn't carry on a conversation with him, but he is very nice, and says hi to Bailey when we're on our walks.

Bailey is excited to see her friends Liam and Ashlie today. Right now we are just watching her 2nd favorite Movie, Alice in Wonderland :) The Real one, as she would say it.


Oh, and Dr. Walker said, that we will need to see him at the end of August to finish up her surgery or something like that. ack.

Silly Bai...

Dave and I went home to shower, and we had just given Bai a dose of lortab thinking she would fall asleep.

Boy, were we wrong!

She was still wide awake sitting up in bed, being crazy. The nurse on for tonite, said she came in to check on her, and the menu was on for her movie, and she was just sitting there singing songs. Typical Bai.

She had also talked some other nurse into getting her mac n cheese and chocolate milk. AT 1 AM!!!

We brought back some movies that were better than that VHS, I think Bai just got tired of them. Since they are all older movies. Well the first one she picked, was...THE LABYRINTH! Go figure. She's got all the nurses all excited about it. Quite cute.

Bai sweat so much in her bed or spilled her drink or something that her bed got wet. So she screamed SOOO loud JEN!!!!!!!!!!!!!!!! to call her nurse in. Good thing her nurse has a great sense of humor, and thought it was great.

She keeps telling Dave, that she's so happy. I hope we get happy news tomorrow :) So we can ALL be happy! :)

UGH!

We definitely won't be home tonite (Monday).

There's a chance we just might be home tomorrow.

Pathology is not sure what this is, and what the treatment options would be at this point.

So if they don't know by tomorrow, then we may go home tomorrow dependent on Bai-Bai, and then have an appt here on Wednesday, to discuss what it is.

At this point, I'm so drained, physically and emotionally. Bai is just so tired of being here, and we're just so worn out. Poor little girl. I just want to be able to snuggle her, and have her not be in pain.

Thanks for all your kind thoughts and prayers. :)

Update.

A Nurse Practioner just came in, and said the pathology report isn't complete yet, so, we still have to wait on oncology. Waiting really sucks!!!

This word was mentioned in what it possibly is.

http://en.wikipedia.org/wiki/Histiocytosis

I will have to do more research on it AFTER MY NAP!!

She Ate!

Sunday nite, she ate a whole bowl of Mashed potatoes!

Rayann (our awesome neighbor!) brought cookies, and told bai if she had one bite of potatoes she could have a bite of a cookie, so bai had a bite of a cookie, then went back to the potatoes and ate the rest of the potatoes!

Thats the msot she's eaten the whole times she's been here, definitely a HUGE relief. :) She finished the Cookie too, and all the M&M's that came with them.

 

Ice Cream & Necklaces

Chocolate Ice Cream for Breakfast, a little Sword In The Stone, and some Bracelet and Necklace made for a great morning with Daddy, while Mommy was catching up on sleep.

 

Nail Painting

My friend Stacie, was in town from Arizona, for her sister's wedding. So on saturday nite, she stopped by (with her friend Nicole, whom i've met a few times) with a treat for Bailey. She also pulled out nailpolish and painted Bailey's fingernails and toenails. That made Bailey so happy. She has let everyone know that her friend painted her nails. It was very thoughtful of Stacie to do that, and I never even thought of doing that, even though Bailey is constantly asking me to paint her nails at home! It definitely helped boost her spirits :)

 

 

 

 

Playing with Uncle Josh

These 2 colored, sang songs, drew pictures, Bai made him draw a llama from Emporers New groove. It was cute. They had a blast. So much fun. I loved the songs bai was making up. I'm so glad i caught a little of it on video.

Thanks so much for coming up Josh!

 

OoVoo with Idaho Family.

With our new laptops, Bailey got to talk with family from Idaho. Oovoo is like Skype, and Grandma and Grandpa Idaho, wanted to talk to her. She didn't say too much, but she did say a few things.

 

 

Coloring

A favorite past time has been coloring lately. We have many drawings on the walls now ;)

 

The cut

Bailey tells people, that she got a cut on her ear, and then she says, "did you know that I have drums in my ear?!"

Its sort of funny to hear. This is after her bath, so her hair was pulled back a bit. It still looks pretty scary. :(

She just fell asleep, so I think I will too.

MRI at 7:30 AM and she has to be sedated for it, so that should all be interesting.

 

 

Visit from Uncle Josh

Bailey adores her Uncle Josh, and so far he's been the only that's been allowed in the bed with her, they were so funny making up little songs. They drew a bunch of pictures, and talked, and played with all of Bailey's toys. She had a lot of fun, and cried a little bit when Josh and Rachel left. Thanks for coming, guys :)

Bath!

This is a new style of bath, that i've never heard of, but it pretty much worked.

The shampoo you didn't need water, and there was no need to rinse it out. Apparently Nasa uses it. It turned the towels Orange. She smells much better. She doesn't want her hair brushed out too much though, so it still looks pretty bad :(

 

 

Wagon Ride #2

Bailey wanted to go with us to dinner, so she got to go on another wagon ride!

We've just been eating hospital food (its not THAT terrible (it IS cheap)) since we can't bear to leave her.

The kid stole my potato chips!! Oh well, i'm just happy that she actually ate :)

 

 

 

Sunday Morning

Dave and I slept on the "bed/couch" in shifts last nite, so we're both a little sore.

We could both totally use a massage/chiro adjustment after all this. ouch! haha

She slept most of the nite, for once, but was up really early. Right before my shift of sleepign in the chair was up, she had a fit of pain, so they gave her some tylenol, I believe, and that helped. Her fever broke, before we went to sleep and she's doing better on that end.

Her face is looking a lot more swollen today, but she's got her cute little smiel goign on, its adorable.

I was awoken to her going, Dad, its morning Mommy needs to wake up! Funny kiddo.

Found out she was acting a little loopy due to some medicine they had just given her. :)

She just had a CT scan, and is now beading some necklaces/bracelets for an activity.

She was doing some random signs before the CT scan in some pictures, it was funny.

I told her that Dave's cousin would probably be coming to visit her today, and she got real excited.

She's still complaining about her back being sweaty and itchy so we take turns itching it and blowing cool air on it.

Other than all that, nothing else is new.

She'll have an MRI in the morning, and hopefully we'll know more tomorrow!

Ride with Dad

I like this pic, because she is sitting up, and looking at everything around her. She loved it.

:)