little miss Tania has been deemed eligable by maw.

[jessg]

So I'm not sure if I am doing this right or even in the right place if not feel free to let me know
So my daughter has been deemed medically eligible for a wish and im confused if I should happy because she is gonna get the experience to go to wdw or sad because she is sick enough to have qualified even though she hasn't spoke to the volunteers they are supposed to call me and confirm to come out either this up comming week or the one afte. Im 100 percent sure she will pick wdw because she has been begging to go since she could talk .
My daughter like many was born a beautiful healthy little girl with what looked like a birthmark on her ear or so that is what I was told it was, and thats what we believed till right before her second birthday when one day I noticed what I believed was her bitrthmark had a scab on it so I took her to the er as her dr had told me to they kept her over night to give her iv antibiotics and the next day went home with and appointment a week later to visit and ent. Well the day of her appointment I was changing her **** when it tugged her scabbed birthmark so I called 911 and waited for the paramedics while my baby loss blood in large quantities to the point were she was really pale. Once again they kept her overnight and gave me an appointment for a few days later with a diagnosis of a hemmangioma. 2 days later she woke up from her nap and the scab she had on her ear stuck to her pillow, there blood was everywhere it looked like a scene from a horror movie. Back to the hospital we went the paramedics couldnt get get it to stop bleeding the er doctors couldnt get it to stop bleeding they had to put a stich in it and stabilize her she lost over a liter of blood. They sent her to a bigger hospital where after many test and almost 2 week stay we got a correct diagnosis of an AVM since then my daughter has been in and out of hospital to manage her avm and control bleeding as needed since hers is in a difficult spot the best they can do for her at the moment is embolizations and sclerotherapy.
Her avm is located in her parotid gland feeding off her carotid artery. So far we are waiting for the drs to come up with something, anything to help her. I have faith and pray always pray but she has been through so much she is such a strong little girl.
Our family consist of the following.......
Erick 18 months
Tania our wish kid 5 yrs old
Raul aka daddy 26
And yours truly Jessica aka mommy 26

I have read many of you alls trip reports and love them !
Any advice or tips let me know

 

[Betty Rohrer]

I have 2 grandsons who each has had a MAW trip. if you would see them you would wonder why. if breathing meds quit working both are gone but to look at you can not tell. for what your daughter has been thru, it is a week for her to be a normal kid. hope you get to stay at Give Kids The World for her wish as there is a lot of extras there. go, have a great time and let her be special

 

[jessg]

My daughter also looks healthy for the most part except when she gets over worked or cries then the left side of her face tends to change go a darker color do to the blood rush from the avm or if you look at her ear you can see where it has been partially reconstructed. If I knew how to post a picture I would she looks like your typical healthy 5 yr old

 

[LockShockBarrel]

If you head to the disAbilities section of the board you'll find lots of other parents that have kids that are going on or have been on Wish trips. Lots of great advice, tips, and stories.

 

[jessg]

If you head to the disAbilities section of the board you'll find lots of other parents that have kids that are going on or have been on Wish trips. Lots of great advice, tips, and stories.

How do do find said area im not very good at this its all pretty new to me

 

[Betty Rohrer]

to op: when you get to the list of boards where you found this board you will a little ways down the list you will find it. it is not hard

 

[jessg]

Thank you Betty, so I have an update I just hot a call from make a wish volunteers and it seem like they will be comming monday at evening to see Tania and ask her what her wish is.

 

[Claire&TheBoys]

Here's a link to the MAW trip thread:

http://www.disboards.com/showthread.php?t=3084932

I hope your precious daughter has a wonderful trip.