Probably my LAST post...

This will probably be my LAST post on this blog.

Bailey had her 6 week follow up appt with Dr. Walker today...

He said everything looks good, and that he  doesn't need to see her for SIX months, and at that time, she'll need to have a 3D CT scan.

We also told him the story how Bai asked if she could text Dr. Walker to see if she could ride her bike.  He gave her a big smile and said, you can text me anytime. HAHA.

We talked to the plastic surgeon on the way out, and he remembered Bailey right away, and said the incision looks good.  She wasn't happy to be there, that's for sure....

We are SOOO thrilled not to have to (hopefully, knock on wood) go back to Primary Children's Hospital for SIX MONTHS!!!


Thanks for everyone's support thru everything...We're glad its basically over :)


Our bills have been super high, but we got a bit of good news with one of them (our highest one).  They said if we paid it off in full, this week-they'd discount it 30%.  That's a BIG chunk of change.  So we're gonna do it, and make it work.  That'll save us a lot of money in the long run, and it'll have one bill paid off.  WOOT!!!

Follow Up Appt

The Tuesday following Bailey's surgery we had a follow up appointment with Dr. Siddiqi and Dr. Walker.

Bailey was completely unhappy about going to the hospital again, but we assured her that she wouldn't get any pokes, and she wouldn't get hurt in any way, and the doctors would just look at her.  I feel so bad for her sometimes...

They all said everything looks great, which we knew would be the case, and Dr. Walker wants to see her in 6 weeks, and Dr. Siddiqi (the plastic surgeon who did the Bone graft) wants to see her in 6 months.

Dr. Walker (We still think he's the bee's knees) feels pretty confident this was a one time thing and its all over with for the most part.

It was really nice to have these guys working in the same clinic so we didn't have to go to multiple offices that day and they work together, its just nice.

We tried to go get an image of the bone graft from CT, but the lady in medical imaging was just SUPER rude.  We walked up to the Window and she picked up the phone...I swear she just pretended someone was there...and then she was rude our entire conversation.  She wanted to charge us for the CD, when we weren't charged before.  We'll just have to work our way around that one.  It's too cool of a picture to not have for records to show Bailey when she's older, what it looked/looks like.

Coloring

Doing one of her favorite things. Coloring. On her bed, downstairs. Little girl would color all day. She has crayons, probably in every room of the house, even some in the car. I know it kind of has a glare from the flash, but we bought her a porcelain teaset that has princess stuff on it from ROSS for being a brave girl in the hospital...She LOVES it. :)

Bed Downstairs...

I brought her mattress downstairs, because I thought it would be easier for her to get up and down out of it, and didn't want her hitting her head on the railings and such. She loved it, it was so fun for her. I thought it would also help promote more rest for faster healing. I think it helped with everything overall. She did stay up late watching movies most nites, and that has been a hard habit to break, but I'm gonna blame her Dad for that one. He's the one that would set up the sleep timer on it...

It only was like this about a week, and she's back in her own room now, and has slept thru the nite in her room 2 nites in a row now, which is a record. I'm pleased as punch! haha

Final Wagon Ride.

Final wagon ride to leave...just waiting for Dad to bring the car around :)

She even said a weird thing...that she didn't want to leave. I forgot what we told her she could do if we left, but whatever it was, it worked, and she was okay with going home.

Crazy Hair

Look what having surgery, and having part of your hair shaved does to your cute little hairstyle that you once had...

She's getting ready to go home here, in her new shirt that she bought the Monday before we came in :)

Bubbles!

One of the things that Bailey must do before she leaves the hospital is WALK! Bubbles is the answer to get that going.

So we took her down to a playroom, and got walking. Her Face in the 2nd picture on the top is my favorite. Its absolutely adorable.

She still loves bubbles, and I'm so glad that during her first stay Ashlie came on the day she did with bubbles, so that she would walk...we stuck with the idea this time, and it STILL worked. :)

Eating.

Bai was very particular this trip. I just called it a trip? Crap. I mean stay. By no means was this a trip! Sure, I packed a suitcase for her, but still. Geez.

She didn't want to get dressed at all, she wanted to do things HER way. Which for the most part was fine. She and I spent a lot of time together. We snuggled a lot. It was great. We watched movies together. I am shocked and amazed at how many movies this little one has memorized! Seriously!

Here she is eating her food just in her lap. She didn't want the whole tray in front of her.

She also didn't want to take that funky looking hat off of her head, I finally got it off about 5 minutes before we were discharged. Silly kiddo.

Hanging Out

Bailey loves the wagon rides. It helps her feel better. She didn't want to get out of the wagon at the end of the ride. She said she just wanted to sleep there. The 3rd picture is right after the drain came out. She was NOT happy about having that thing come out. Neither would I, to be honest. It seemed painful. She's still grasping onto that doll for dear life. :)

Recovery Room

Right after surgery, she goes into a recovery room area, where they make sure everything is okay, then they move her to a room. It was super hard to see her like that. Especially with the drain hanging off. :(

Way to Surgery

After getting some Versed to calm some anxiety and fears, she was a little more chilled out, and not so angry with everyone. (She had yelled at the nurse that came in to talk to us...). The Anesthesiologist didn't give us a whole lot of time this time to say goodbye, like we had last time. Probably cause this day was a regular day, and they had lots of kids in there. Last time was a holiday and there was only like 1 other person in the waiting room with us. We cried on our "long" walk back to the waiting room, to wait for our phone calls on updates. They estimated it would take 3 hours, but it only took about 2, maybe 2 1/2. They also told us she would be going to be PICU afterwards but she went to just a regular surgery recovery room. We thought she would go to a NTU room, so we would have a chance to see our Favorite Nurse Cassie and/or have her be our nurse, but we ended up going to the 3rd floor. Sure is different once you get used to something!

Making A Face

Primary Children's is so great about making kiddo's feel comfy before a surgery. A Child Life specialist came out while we were in the surgery waiting room (which we were in for an hour), with a little doll, and some markers so that Bailey could draw on it. She even brought out a bunch of Doctor Tools so that Bailey could practice on the Doll. Bailey named the doll, Doll. She's usually creative with names. She still snuggles with the doll, and it stayed on her bed with her the whole stay in the hospital.

Before Surgery

On the car ride over to the hospital. It was still dark outside, since we had to be there at 6:45, we had to leave at about 6AM. Bailey isn't normally up til about 10. She was very quiet, and just wanted to hold hands, and didn't really want to talk. We would get whispered I love you's though.

Her laying down on the table with her blanket...It was after a friend of ours Chelsea, had checked her in-weight check and all of that fun stuff. Bailey was just really sad, and didn't really want to cuddle. I guess she was mad at us. :(

Updating on the Stay

Since I mostly only took pictures on my phoen during her last stay, I just transferred them to my netbook, and today I'm going to try to blog them, tell stories about them, since this is somewhat a journal, and I want to have it for my memories, and Bailey's memories.

Dave called the insurance today, and payment for her last stay seems to have been approved so that's a huge weight taken off our chest...It was only like 35,000 dollars. EEK!  Since it was 3 months ago, who knows how long this next one will take.

Bailey seems to be healing nicely, other than the weird rash on her torso.  I'm just glad that it isn't bothering her, cause then it would bother me even more.  Bailey sure is a little trooper.

We are home.

We got home at about 3pm Friday afternoon.  It's been interesting...
This surgery was a little harder for all of us.  Not that the first one wasn't hard, but it was such a surprise, that it didn't all sink in for us.

She was in a lot more pain it seemed, and wasn't anywhere close to her normal self.  She didn't like talking to anyone that much, when before she would take the nurse's ears off.

She didn't want to wear the hospital gown or her pajamas at all.  I don't blame her though.  :)

This time we didn't have any visitors, and last time we seemed to always have someone coming in, and that helped boost Bailey's morale, and  make her happier faster.  It was just the 3 of us the whole time.  Kind of different.  Serious bonding time though.  That is probably why I haven't put any pictures up on here.  I didn't take that many.  I only took 5 on my camera.  The rest were on my phone and I uploaded those on my facebook page.

She's doing fine right now, still not eating that much, but she's drinking.  I brought her mattress downstairs so we're camping out in the family room, and she's just watching some of her shows, and resting.

After Surgery

Well, we survived the early morning drive IN THE DARK!  Bailey was just really quiet and kind of dazed off the whole time.  Luckily we knew the nurse checking her in (weight check and such).  But it was still a long wait after all of that.  They gave her some calming medicine (Versed) before the anesthesiologist took her back.  It was a very different experience this time.  Last time Bai was so much more calm, and telling us jokes, and tellign the anesthesiologist jokes.  She was just very uneasy, and probably knew more of what was going on this time.  Estimated time they told us was 3 hours.  EEK.  I think it took shorter than that, but I sorta lost track of time, which was probably good.  I kept busy watching some TV shows on HULU, and playing on Facebook on my phone.  I loved reading all the messages from friends, and friends of friends.  :)

The plastic surgeon came back to talk to us after it was all over, and said he put in some plates and screws with the bone he put in, that will dissolve in a year...wow never heard of that one!  Very interesting.  He also said she won't have to go to ICU.  That was exciting for us.  :)

The best news of all, is that if her drain that she has (you can see it in the picture), can come out tomorrow, and if she's walking/eating...that she can come home tomorrow!!!  :)

The swelling we noticed last week.  They realized was her brain oozing out.  Seriously?!  EEK!  Her neuro surgeon was kinda funny when he told us, but seriously...EEK!!!  Such a nice guy though.

She must've been feeling a little nauseated casue she would sit up and say she needed to throw up.  She is still sleeping, and I should probably take a nap, but we don't have a nice lay down bed here.  LAME!  Oh well.  Hopefully, we won't be here long....Hopefully.

Tomorrow's Surgery

I just got the call from Primary's to let us know when to come in tomorrow.

We need to go in today to get some lab work done.  Bailey's favorite.  Poor kiddo.

Tomorrow we need to be at the hospital at 6:45, and surgery will be at around 8:15 AM.  We will be going to the PICU unit immediately after surgery.  I will update as soon as I can, probably while she's sleeping...

She's super nervous, and had a mini-breakdown today.  So we're just trying to keep our minds off of it all.  We're hoping to go golfing today, but the weather isn't cooperating. :(

I'm super nervous and super emotional over the whole thing.  Can't wait to come home.  :)

Thanks for the prayers, love and support :)

Sorry...

Sorry I didn't update y'all.  I haven't been so good on that.  Been dealing with a migraine all week.

Bailey went in to the doc, she had a CT scan.  No cause for alarm, surgery date is still Wednesday.  I am super nervous for that.

Anywho, doctor said it was some brain fluid leaking (CSF-I believe is what he kept calling it).  And the size will go up and down.  I've noticed when she's more active the size goes up.  She's supposed to lay with it elevated, but she doesn't lay still at all...She is ALL over the place.  She's a wild kid.

The nurse/helper lady is SOO nice in Dr. Walker's office.  She gave Bailey a little purse with a bunch of pennies in it, to make wishes in the wishing well in front of the hospital.  She also remembers how nervous Bailey is, and calms her, and lets her pick her room.  Maybe that's how she is with all the patients, but still, I appreciate it just the same.  She didn't get to see Bonnie in Radiology, so Bailey was super duper nervous, and moved  a whole lot during the Scan, but it was still okay.  As soon as her name was called and she saw it wasn't Bonnie, she freaked out.  Poor thing.

She still says that she doesn't love Dr. Walker though...She's so funny.  I love her so much.

Surprise Visit...

We're making a surprise/emergency visit to Primary Children's Today...

Her scheduled surgery is next wednesday, but we noticed some swelling and its super soft, in a super squishy way...so the docs want to check it out.

Dave called the hospital last nite, and the resident he talked to, remembered her story and all about her, kinda cool...but that resident said it could be leaking brain fluid, so it may mean time to move up the surgery or just let it go, and gave us some thigns to watch for.  UGH, i hate this type of thing.

Sorry or all the typos...I'm just in a rush.  10 AM is not my best time for typing a blog. :)

Forgot...

We were talking with Dr. Walker about the tumor, since we finally figured out what it was and stuff.

I asked if he knew anything more about it than what I was told. He said, they are mostly found in the spine, but he hasn't seen one in the brain/skull area in 15-20 years. The ones that he's seen in the spine are very painful, so he was amazed that Bailey wasn't in pain. He was also surprised that because it was so rare to see in the brain/skull area that it was benign and not malignant.

Let me just say, I'm soooo thankful for the many prayers and thoughts that my little girl received and that we are where we are today. All I could keep saying was Wow...

Today's Appointment

Wow, what a day!

Bailey as usual, got all dressed up for appointment. She's so funny about things like that. She started to get a little nervous about it as we got closer. She said, "Now nobody's going to poke me right? And if they want to, I can just say no thank you right?"

We had to fill out new patient information when we got to Dr. Walkers office, which took forever...but there wasn't much waiting in the room once we got called back. I love that hospital every one is so nice, and its all kid friendly. Its great.

Dr. Walker checked out her scar, talked to her a little bit, she was so shy! I figured she'd be all talkative, want to sing and dance...I mean, its Bailey!!!

He then gave us the options for what we could do as far as the bone graft. Originally, he had said they were going to do some sort of titanium in there. I guess they've changed their mind on that one. He said they could pull some from the back of her skull, from her rib, or do a bone donor. He stated that since she's so young that the best option might be the donor bone. They said it'll take a few weeks to order that. He also said that her bone and body should accept it just fine, and it should attach and grow with her.

He then called in the plastic surgeon, to check it out. Bai was very unhappy at this point, and would barely let him look at it/touch it. He ordered a 3D Ct scan, to get the correct measurement of what size bone to get. So, we got to go visit Medical Imaging. A place we visited 6 times when we were there in July.

Our favorite Radiology Tech was there....Bonnie! Bailey remembered her, and Bonnie remembered her, and Bailey was so good, and laid still. I'm sure if it was any other Tech in there, it would've been a fight. So glad it was Bonnie. Of course she got a little prize afterwards...

After the CT, we went upstairs to see if our favorite nurse was there (Cassie). She was on Lunch, but she's so sweet, she came out to talk to us. I asked if we could request her, and she said yes...if it could all work out. haha so I hope we can get her when we go!!! Some nurses you click with, and some ya don't. Bailey was so shy around her, but it was nice to be able to tell Cassie that the tumor was benign. :)

So her surgery is scheduled for October 6th, and the day before she'll have to have some blood work done-which Bai will NOT be happy about. I'm so happy to finally have a closure date to this, and let Bailey return to her normal life, and not have to be SOO careful. But, I'm still going to be that over-protective momma.

Tomorrow...

Tomorrow Morning we're meeting with the surgeon.

Dave has the day off.

Bailey is excited to possibly visit her old nurse, and the playroom, we'll see what we can do.

I'll update when we get home, what the plan is. :)

ONE WEEK!

One week til Bai's appointment with Dr. Walker. I never thought I'd be excited to say, I'm looking forward to her next surgery date, but this kind of surgery, where she can return to a normal life, I am! :)

Here's a video of Bai playing on one of our phones from last week.

One Month...

 

One month ago TODAY, we were sitting in the PICU while Bai was off and on sleeping and in some pain. We had no answers, weren't sure what was going on, and things still hadn't sunk in.

We're glad that this is where we're at today, and very VERY grateful.

This pic was taken last nite, as she decided she needed to eat a poptart at 10:30 pm in my bedroom...this was the sweet face I got. Love this kid. She cracks us up everyday. Such a cute kid.

Speed it up?

Can someone speed up September 7th Please?

I just want to get all this mess over with already?

Silly Kid...

Weekly Update

There isn't anything going on right now, but I thought I'd give an update anyways...

-We absolutely cannot wait til September 7th for the appointment with the Neurosurgeon to get the next surgery date made... It feels like its forever away.

-The stitches are dissolving and its really weird to watch. Its itching her as their disappearing, as well as the hair growing back around it, so that's not been fun for her.

-Bailey had a bit of a nite terror last nite (i've been having them since we got home from the hospital it seems), and it took a loooooong time to get her out of it. I hope it doesn't happen again tonite. I hope its not related to any of the trauma she's been thru. She's been really verbal about everything lately, and has been remembering people that came and visited her in the hospital. Kinda cute.

-We got two more bills in the mail today. We've yet to get anything from insurance saying they've denied or processed any claim...so we're anxious to get that.

Dave has had this past week off of work, from saved up PTO. We've celebrated our Anniversary (5 yrs on Monday), and his birthday on Wednesday. So, I've gotten to sleep in, do errands during the day, and get a few more things done around the house as well. :)

If you still read the blog, Thanks! Sorry I don't have anything exciting to put on here right now :)

Wednesday Update.

There's no real "new" update to say right now.

Bailey is doing really well. She sometimes complains of a headache, but doesn't want to do anything about it. She just wants to be Bailey, which is great! Her sutures are dissolving, and it is soooo crazy to watch that happen. The incision is starting to itch her, so I got some advice from a friend, of what to do for that, so Bailey won't scratch at it. We found blood on her hand yesterday, not knowing where it came from, so we're guessing it was that...

We went to Boondocks on Saturday to celebrate Bailey being home, and the tumor being benign and all of that. It poured on us almost the whole time, but it was still interestingly fun, and Bai loved it. We'll have to go another day when its not going to rain, I guess. I didn't take my camera (weird, I know) but I do have a picture from my phone, I'll put up. :)

We still have to wait until September 7th, to meet with Dr. Walker, the neurosurgeon to find out when the next one will be, and so I'm still being SUPER protective of her, but I find myself letting go just a little bit. She seems to be adjusting a little to it, but still mad about the bike riding. :)

We received an anonymous donation on Sunday...which made us actually think about just how much are bills are going to be. So we looked up how much are deductible is, and what percentages are insurance covers... Our house dreams and Disneyland are out for the next year (or two). That donation we received was a welcome surprise, its going straight towards medical bills. When we get a bill...so I guess its going into savings for now :) Thank you to whoever it was!!! You're great!

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.