More to come...

We have all had the stomach bug and wow, not fun.
We are not doing transplant. They want to resect and do chemo. Transplant is still a huge possibility and always will be and I will post more as soon as I can make good sense again.

Tomorrow is the big Day

They will meet about Isabella and make the final decision about listing her and how quickly. I am feeling alot of emotions right now.
I feel pretty alone here in South Carolina. Online I have tons of support but at the end of the day. There isn't any in my house. No one comes here that isn't paid to see us except for one person and that doesn't count. That includes Grandparents, Aunts, Uncles, etc.
Maybe once I know stuff for sure tomorrow I will feel better.
I just keep seeing Landon smile and know I won't be able to see it for weeks and I see Isabella bouncing and laughing and know that we are going to pull the rug out from underneath before she knows it and she will have to feel like crap to feel better again.
What if Landon forgets me in time I am gone? In a normal or somewhat normal life. I would have a supportive husband. landon wouldn't have the physical issues that keeps him here for therapy and we would have a room at Ronald Mcdonald house and Landon would be there and the supportive husband and I would alternate in hospital with Isbella at least some of the stay it would be that way.
But that isn't our norm or our reality. TRANSPLANT is huge and we need to raise a pretty good amount of money to make sure we don't lose everything while I am out of work.
I should have fundraised a year ago, but in my heart of hearts I hoped and prayed that liver would behave because it functions. But I will be damned. Cancer in both lobes and what could have been HCC.
There is the ultimate fear that she could die. It does happen. It is morbid to type it and think it but how can I not. I always want her with me forever no matter what we have to do and Landon. We are a threesome. We must all be here to be complete as family. Landon and Isabella have always been here together and I can't see it any different.
People say I am strong, well I think the next months will test it to the nth degree and I hope I don't just fall apart because I might. I am scared for all of us. Landon. Isabella and myself.

Could this week have been longer?

On top of Isabella having scans having a port placed only last week, we learned today that the provider for the supplies that I need to maintain it didn't have everything we need. This supplier is contracted through my insurance and I just don't think the rep I talked to tried that hard...FUN.
Landon and Isabella are happy as ever. Isabella is really feeling all her toddlerness I tell you:)
Meanwhile, all this is going on, I have someone trying to make trouble in my life and taking time away from work and the kids by the trouble they have caused.
Oh, well that person hurt themselves more than me.
PS. getting the stroller/wheelchair tomorrow.

Landon and I may have a special outing together soon since the princess has gotten so much more of me lately.
I hope everyone's weekend is off to a goodstart!
Take Care
Chasity

At MUSC

Well I am killing some time on their public computer while we wait to go back for Isabella's bone and CT scan. I really think all scans will be done by 11am, but we will not know the results till next week. Everyone has to see them and they have to be read, blah, blah. This is the typical way it works.
She hasn't eaten since last night and is such a little trooper. She is all woman and very tough. It kills me because she knows she is having something done but she isn't crying or upset.
Of course,Landon is with the sitter as it wouldn't be good for him to be toted all around with us and he likes his routine.
Oh and I think I am going to have a stroller for him soon!! Fingers crossed, eyes, legs and toes!!
I am going to make alot of phone calls today while she is scanning. You know have to make use of the time.
The things that happened yesterday for those of you who know and or at least sort of get it, will most likely continue to get worse. I have never seen someone so intent on just causing me trouble and hurt because I wouldn't negotiate something that wasn't negotiable with that person??? Just silly and it stresses me out which is what the person wants is my misery but I am trying to breath deeply I only have a couple of weeks and will be tightly nipped and clipped!
Wasn't there a Mary J Blige song? That said something about No More Drama - I will be riding around in my minivan listening to that song and singing it as loud as I can LOL
Update later

Who Knew?

That someone could put so much effort in to trying to hurt me?? Even indirectly. Well someone has enough effort to stay on computer and contacting people all day long and try to do things 3rd party through me.
But that person can't make that kind of effort to come up and help me?
My mind is blown and I am somewhere I truly thought I would never have to go!

SNOW!!

It stuck to the ground for like 5 minutes and they closed all schools and I didn't have sitter and of course Jeremy wouldn't watch kids for stupid reasons. So today I missed a day of work for no real good reason.

The water line broke outside yesterday but luckily it was fixed relatively cheap!

Wow!! Busy

That doesn't even describe us. In the past week, we have had car repairs, cardiologists appts, learned medicaid cut all therapy, trained on how to care for Izzyb's port, eye doctor and working out a way to keep Landon's therapy because our state is stupid when it comes to budget cuts and well most everything in the money area. But that is a topic for a whole other day.
Other than the kids are doing well. Isabella did bleed from the darn, tooting, volluting, dilated capillary! again tonight. When I say she bleeds like blood arches in the air up to 2 inches and you have to hold pressure. Just one of her weird things because of all that has happened. She is fine and we got it stopped.
Landon is doing quite well. Right now, the latest craze at our house is Dannon Danimals Yogurt?? Well the kids both love it and eat the heck out of it. Landon is really doing great with his spoon feeding and his motor skills are improving more and more and the includes ORAL!! Way to go Landon.

Oh and can we say thank goodness it is tax time!! Must pay lots of bills!!!!!!! I am sure alot of others feel that way, too.

Hope everyone is having a good weekend.

Monkey Joes!! Our First Fundraiser

Anyone local - we are having our first fundraiser on 1/29/09 (Thursday) at Monkey Joes right next to Barnes and Noble. It will be from 3:30 to 7:30 and we will be raffling off two 8 guests birthday parties for Monkey Joes!
See you there!

Help Isabella and use IGIVE.COM

I have registered Isabella with IGIVE. If you go to IGIVE.COM and do keyword search on COTA when searching for a cause, it will give a list of COTA for XXXXX XXXXX. Scroll down and you will find COTA for Isabella Gwinn. Once you select her you can register with the site and shop at many of the stores we are already do online and portions of what you spend will be given to Isabella's fund!!

Isabella's COTA Page is Up!!

http://cota.donorpages.com/PatientOnlineDonation/COTAforIsabellaG/

The above link will take you directly to Isabella's very own COTA website where online donations can be made to help with her liver transplant. Please spread it around to as many as you like! Every dollar helps. Of course, we could use volunteers!!

Her website is pretty plain right now but in the next couple of weeks we will have it glammed up a bit with more photos and things like that.

Love you guys,
Chasity

I am so sure...But

I am so certain of our plans and feel good about them. But then today when tthings slow down and I let everything run through my head over and over again. I look at her in the face and I think it. That stupid freaking thought and I let it creep in my head. What if I lose you?
Sounds selfish, doesn't it? Well it is to some degree because honestly I don't think there isn't anything I wouldn't do to keep her here with me and Landon.
I don't have enough video and enough pictures and I am so afraid that somehow I will forget the most important details of her face and her smile and her kiss.
I am really forgetful these days and it really tears me up. Literally.

Fundraising and Moving Forward

As of right now we are not listed for transplant. The scans on the 22nd should rule out any cancer outside of her liver and then we will list for transplant. We are going to do some fundraising for household expenses, travel, etc. My time off will be unpaid and Landon will still be here with his care provider and of course we want to have a home to come home to!
In the next couple of weeks I am going to post more about the fundraising. But the way we are doing it all donations will be tax deductible through a foundation. In the meantime, if anyone can link to us and help get word out so that once we have the fundraising website up and running I can direct people there where the option to make online donations will be available as well as other ways.

Not much has changed. Isabella had a port placed Wednesday and because Dr. Chandler rocks it went very smoothly. She bounced back like nothing. I think the iron and extra vitamins have helped alot. She is back to plundering. Pulled all her clothes out of the drawer tonight and threw them around the room.

Landon well he is definitely feeling his 2's. Can we say temper, temper? If he doesn't get what he wants oh, to be non verbal he can still tell me off very well! We are doing more spoon fooding with him and you know he does really well with it. He is more accepting of foods than Isabella. He is growing and his trunk has gotten alot stronger and he is just funny. He will kick and hit his little gym.

Oh and as for Isabella eating. Yeah, we are still eating vanilla pudding. Nope, this isn't sensory anymore. Even speech agrees. She is stubborn. She will drink the heck out of pediasure and eat vanilla pudding. She is very calm about it. She simply looks at the spoon and if it isn't vanilla pudding she closes her mouth and turns her head.

Well I guess that is it for now. More information will start to pop up regarding the transplant plans. Right now, we plan to list in Pittsburgh, Atlanta Children's Heatlth and MUSC Charleston. That will put her in 3 different regions. We also have a living donor possiblity.

Love,
Chasity

Listing for Liver Transplant

We have scheduled scans for 1/22 and once it is confirmed that there is not cancer outside her liver. Isabella will be listed for liver transplant.

Isabella is getting back to normal!

After alot of iron and vitamins she is finally getting back to herself. I got the first kisses where she crawls to me and stands up for kisses and then I squeal telling her how great they are and she falls over laughing and we repeat. LOL.
She was just in a wonderful mood tonight!! It is good to see that coming back out of her.
Landon got his haircut the other night so he is still giving me a bit of the evil eye since it is least favorite thing for me to do!

But overall both kids have been a in great moods since we kicked that nasty cold over Christmas.
Isabella's port will be placed on 1/7/09. Then the following week we will have a CT scan and bone scan. Once all of this is complete I would expect for the doctors to recommend their treatments options to us by the end of January.
So for now we are just hanging out and resting up for what is to come.

We are looking forward to the new year. Great things are bound to happen! Well honestly, having Isabella and Landon in my life is already a great thing no matter how I look at it.
During the holidays I thought alot about this and they have brought a tremendous amount of joy to my life and will continue to do so.
Just one thing at a time.
Take Care
Chasity