12 more days...Florida isn't far away

Hold on, this is a long post!

We are all excited about our trip to Orlando and Disney in 12 days, but I am a bit anxious as well! Ivee is still having gagging/heaving in the mornings, and sometimes throughout the day. She also still has the fluid build-up in the back of her head. She still shows no signs of shunt malfunction, but I stay concerned! I believe the gagging/heaving is stemming from constant drainage, and since she has a difficult time with swallowing, it is leading to the issues. Unfortunately, Ivee has a paraesophageal hernia, and the heaving really does a number on her little tummy that has been through the horrors of a nissen fundoplication pyloroplasty surgery. She also has been complaining on and off about her back hurting, and though I'm not overly concerned, it's always there in my mind. (Since her cancer can grow in the spine as well!) I am going to take her to her pediatrician today or tomorrow, I hope, to try to get her some relief from the drainage issues before we take her on her MAW trip.
On a good note, she is doing well! She is walking with the walker better, wanting to walk more, she has finally gained weight on a constant bases (there was a whole year + where she didn't grow at all in weight or height), and she is learning how to potty train. The potty training is taking effort on mommy and everyone's part. She doesn't have a great "warning" mechanism, so we ask her all the time, and many time she concentrates and tries to go. She has a few accidents here and there, but we all know this is going to be a long work in progress, like everything else in Ivee's life.
A funny Ivee story from the other night. She doesn't like to eat by mouth, and struggles with doing so, but sometimes she asked to eat. 2 night ago she said, "I'm Hungry." Here is the conversation that transpired.
I asked, "What do you want?"
"Chocolate pudding."
I thought to myself, "Great, I know we probably don't have any in the fridge." I looked and all I could find in there was vanilla. So, I held it out and showed her and said, "Ivee, all I have is vanilla."
She gingerly sang, "Chooocooolate."
I gingerly returned, "We don't have chocolate, all I have is vanilla. Is that okay."
She shook her head telling me no.
I said then, "Ivee, I don't have chocolate."
Then she cocked that little head to the side and said Oh, so sweetly, "Go get some!"
Well, after I stopped laughing, I found some mix in the pantry and made it myself! She manage to take 5 small bites...baby steps!
Today, our St. Jude friend, Brandon, has his MRI. Praying for great results for him and praying that God has shrunk or completely killed all of Brandon's tumor! Many other St. Jude friends are returning for treatments of chemo soon. Praying for Haley, Lucy, Justin and Allyson!
We return to Memphis on June 24th for Ivee's check up and MRI. Praying for NERD (No Evidence of Recurrent Disease)!!!

On a final note, this is copied from a friends CB site. If you can find the time, please help to make our lawmakers aware! I will typing my own letter about Ivee and making the government aware of my child!!!

More funding is needed for childhood cancer research.  Funding was cut this year by 10% when the NCI (National Cancer Institute) budget was cut by the federal government.  NCI funds the COG (Children's Oncology Group) hospitals where over 90% of all children with cancer are treated.  COG hospitals develop treatment protocols and carry out research important to development of new and innovative curative therapy.  There is a way that you can help to urge your senator to increase funding for childhood cancer in the 2012 fiscal year. All you need to do is ask your senator to sign-onto the letter that has already been sent to their office by Senators Reed and Isakson.  This letter is asking the Senate Appropriations Committee to fund the Caroline Pryce Walker Conquer Childhood Cancer Act of 2008. 
The Caroline Pryce Walker Conquer Childhood Cancer Act of 2008 was passed unanimously by the senate and appropriated 30 million dollars a year toward funding efforts for childhood cancer.  The funding was for fiscal years 2009-2013.  Even though the Act was passed unanimously the appropriated funds have never been allocated as promised.  The Senate Appropriations Committee has never voted to fully give the allocated funds from the budget.  In 2009 there was no funds allocated. In 2010 only 4 million was allocated but none went toward funding research.  The 2011 allocations were difficult to find but might have been 10 million and I wasn't able to determine where the funding went. 
How can you help to convince the Senate Appropriations Committee to fund the Caroline Pryce Walker Conquer Childhood Cancer Act of 2008? By asking your senator to sign-onto the letter written by Senators Reed and Isakson.  In your letter make sure that you state that you are a constituent.  State why you are supporting funding for pediatric cancer.  Reference the letter written by Senators Reed and Isakson.  You can attach the 2 page document if possible in your email.  I posted the link to the PDF file below.  Give your address and ask to be informed of their decision.
There isn't a lot of time since this letter needs to be signed by your senator by June 8th. 
If you are reading this then I know you have an interest in finding a cure for childhood cancer.  I have sent the letter below to both my senators today.  Feel free to use parts of my letter to send to your senators.  I read a blog today that said in 2010 more money was allocated by our government to help fish migrate than to find a cure for childhood cancer. Does that mean that our leaders think fish are more important than our children?  Let our leaders know what is important by sending your senators a letter today. 


My letter follows:

Senators Jack Reed (D-RI) and Johnny Isakson (R-GA) are spearheading a bi-partisan effort to get as many senators as possible to sign-onto a letter to the Senate Appropriations Committee requesting increased funding for pediatric cancer initiatives in Fiscal Year 2012. Your office has recently been sent a two-page correspondence from Senators Reed and Isakson. I would like to urge you, as my senator, to sign-onto this letter.
As a mother of a child who was diagnosed with cancer, I am frightfully aware that more funding is needed.  My son, James, was diagnosed with a common form of childhood cancer, yet his odds of 3-year survival are listed at only 48%. There are many children with far worse odds than my son.  If he had been diagnosed with DIPG (Diffuse Intrinsic Pontine Glioma) he would only have a 1% chance of survival. It is clear that advancement in treatment of childhood cancer is greatly needed. 2/3 of children who survive have long-term debilitating side effects from treatment. Some of those side effects are fatal.  Cancer remains the leading cause of death by disease for children in America.  Every year 15,000 children are diagnosed and more than 2,000 children lose their battle.  As your constituent, I ask that you sign-onto this letter addressed to Chairman Harkin and Ranking member Shelby of the Appropriations Subcommittee for Labor, HHS, Education and Related agencies.  The letter requests the appropriation of funds consistent with the goals of the Caroline Pryce Walker Conquer Childhood Cancer Act of 2008 (P.L. 110-285). The letter requests funding from the 2012 fiscal year budget for childhood cancer research, surveillance, and educational programs. The NCI (National Cancer institute) consistently spends less than 5% of its annual budget on childhood cancer research and publicly states that more could be done on its website. The letter asks the appropriations committee to provide funds for NCI to increase research efforts for childhood cancer. 
To sign, contact Kate Mevis with Senator Reed at Kate_Mevis@Reed.Senate.Gov or Tyler Thompson with Senator Isakson at Tyler_Thompson@Isakson.Senate.Gov by June 8th 2011.
You can download the PDF file of the letter at 
http://curechildhoodcancer.ning.com/forum/attachment/download?id=2253982%3AUploadedFile%3A116271
Please inform me regarding your decision about signing the letter.  My address is 3300 Morning Star Drive, Helena MT 59602.

I hope you can find time to help with this.