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Old 02-17-2011, 10:00 PM   #91
blessedmom4
WE BELIEVE IN MIRACLES! ~~Nearly twice as many children die from Congenital Heart Defects in the U.S. each year as die from all forms of childhood cancers combined.
 
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Now now girls no fighting on Avy's thread
I will give you both Cokes if we ever get Avy to GKTW
But Mooooommmmmm, we AREN'T fighting, just teasing... But I will take that coke...if it is diet (My drink of choice )
Ella does have the FM system at preschool but we are not allowed to bring it home. She needs it at the YMCA for Gym and Swim. Poor kid just stands there and looks at all the other kids trying to figure out what they want her to do. She can lip read pretty well for a 4 yr old as long as she has some idea what you are going to say. In the Gym she can't hear at all and has no clue what they are going to play each day so she is so lost
Plus she has sunday school and other things we really need the FM for outside of school.
God Bless Ella, she DESERVES to hear in ALL situations, it just makes me so upset for her. I have to fight for EVERYTHING for my children as well. It isn't that you mind working hard to get them what they need, it is EXHAUSTING when everything is this way, I DO understand! Money doesn't make you happy...unless that money could be used to improve the quality of your child's life...Praying SOMETHING happens to ensure Ella can just be a child and hear!
For Avy we really don't know how long she will have her vision. There is nothing they can do for her. It is like she is looking through a paper towel tube that is closing down tighter and tighter. I feel so helpless
I am so sorry for Avy and for you. David was losing his eyesight due to his pseudotumor cerebrii..they tried to tell me he was putting on, he just wanted glasses. They had to eat crow when his Neurologist ordered an LP, which showed his opening pressures triple what they should have been. He is in a holding/stable pattern with his eyes at the moment. I do know the fear (his and mine) when he was unable to see anything but shapes. for Avy and prayers that SOMETHING will help. I believe in miracles!

Last edited by blessedmom4; 02-22-2011 at 07:16 AM.
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Old 02-18-2011, 07:54 AM   #92
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Just joining in. I have missed so many threads and can't figure out why!! Your family is so blessed as are any other children you foster! Can't wait to continue following Avy's journey to GKTW!! We were just there and my kids loved it as well!! Our little guy says he wants his wish to be for GKTW too!!(he doesn't qualify for a wish

Hope you guys get there soon and she can enjoy the sights some!
Christian and Ella are so mad they don't get a wish. We don't know if Hayden can get one down the road we will see how his arthritis plays out as he ages.

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I am so sorry for Avy and for you. David was losing his eyesight due to his pseudotumor cerebrii..they tried to tell me he was putting on, he just wanted glasses. They had to eat crow when his Neurologist ordered an LP, which showed his opening pressures triple what they should have been. He is in a holding/stable pattern with his eyes at the moment. I do know the fear (his and mine) when he was unable to see anything but shapes. for Avy and prayers that SOMETHING will help. I believe n miracles!
I really think in 10 yrs she will have her sight back. Medical advances are coming so far everyday. It is just hard to watch her struggle

Note to self I owe Judy one diet coke
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Old 02-18-2011, 09:40 AM   #93
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So sorry to hear about Avy's vision. Poor thing! Hope you guys hear something back soon.
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Old 02-18-2011, 02:53 PM   #94
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So sorry to hear about Avy's vision. Poor thing! Hope you guys hear something back soon.
Any updates for you yet
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Old 02-19-2011, 10:49 AM   #95
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WE BELIEVE IN MIRACLES! ~~Nearly twice as many children die from Congenital Heart Defects in the U.S. each year as die from all forms of childhood cancers combined.
 
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Note to self I owe Judy one diet coke
I will give YOU one!

I wish we could share it at Disney World!
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Old 02-19-2011, 12:03 PM   #96
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I will give YOU one!

I wish we could share it at Disney World!
Who knows if MAW doesn't get going soon we are looking at Oct too.

Sorry you can keep your Coke
I need this to keep me going everyday
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Old 02-22-2011, 07:18 AM   #97
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WE BELIEVE IN MIRACLES! ~~Nearly twice as many children die from Congenital Heart Defects in the U.S. each year as die from all forms of childhood cancers combined.
 
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Mountain Dew! Some of my children love that drink...I used to work with a lady who drank TWO LITERS every single day!
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Old 02-22-2011, 01:21 PM   #98
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Okay, so I have no idea where I have been, I thought I had subscribed to your PTR. Anyways, i'll play catch up now.
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The has started here
Hayden told me there was someone at the door so I opened it and found a balloon and stuff in the door from Avy's Wish Granters. How sweet is that



Looks how happy Avy is. So so exciting!!
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Thanks for the kind words Judy

Finally some great news for Ella
We have been fighting with insurance to get her new hearing aids and after 15 months they finally agreed to pay for them. She is getting purple see thru ones She really wanted the zebra but I am worried she will hate them in a few yrs so purple it is. The only bummer part is they are still refusing to pay for the FM system (extra add-ons that snap onto the aid so the teacher can talk into a micro phone and it goes right into her ears) because that is $2,550 extra. We are still going to fight to get that added so if anyone wants to send good wishes we will take them

No word about Avy's wish
What geat news about the hearing aids, I really hope they come through and buck up the $$ to ay for the FM System. Can her Dr write a letter indicating that she needs the system? Perhaps they would cover it then? I really hope you guys hear back soon about Avy's wish there anyone at your MAW Chapter you call? What dates did you give them for what you wanted to go?


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Now now girls no fighting on Avy's thread
I will give you both Cokes if we ever get Avy to GKTW

For Avy we really don't know how long she will have her vision. There is nothing they can do for her. It is like she is looking through a paper towel tube that is closing down tighter and tighter. I feel so helpless
Can I have a Coke too?

I'm sorry things are so scary with her vision. I hope that what limited vision she has left remains. What a horrible, scary thing it must be for her to be going through. I cannot imagine what it would be like to lose your vision suddenly, let alone a very slow process. Lots of
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Old 02-22-2011, 01:27 PM   #99
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Mountain Dew! Some of my children love that drink...I used to work with a lady who drank TWO LITERS every single day!
I am a good girl only 1 can a day here and most of the time I don't even finish.
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Old 02-22-2011, 06:28 PM   #100
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Just popping in to say hello! Hope you're having a good week
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Old 02-22-2011, 06:43 PM   #101
blessedmom4
WE BELIEVE IN MIRACLES! ~~Nearly twice as many children die from Congenital Heart Defects in the U.S. each year as die from all forms of childhood cancers combined.
 
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I am a good girl only 1 can a day here and most of the time I don't even finish.
I have to finish mine...it is the only vice that I have left!
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Old 02-22-2011, 07:44 PM   #102
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Okay, so I have no idea where I have been, I thought I had subscribed to your PTR. Anyways, i'll play catch up now.

HI

Looks how happy Avy is. So so exciting!!
she was sooo excited

What great news about the hearing aids, I really hope they come through and buck up the $$ to pay for the FM System. Can her Dr write a letter indicating that she needs the system? Perhaps they would cover it then? I really hope you guys hear back soon about Avy's wish there anyone at your MAW Chapter you call? What dates did you give them for what you wanted to go?

The teacher is going to write up a letter saying she needs it, hopefully that helps.


Can I have a Coke too?

I'm sorry things are so scary with her vision. I hope that what limited vision she has left remains. What a horrible, scary thing it must be for her to be going through. I cannot imagine what it would be like to lose your vision suddenly, let alone a very slow process. Lots of
It is scary. I feel so helpless. I don't know how to tell her what is going on. She doesn't ask and I don't know how much she gets.

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Just popping in to say hello! Hope you're having a good week
Hope you have a great week too

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I have to finish mine...it is the only vice that I have left!
My husband gets so mad when I don't finish mine
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Old 02-22-2011, 07:48 PM   #103
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Sorry Kristy I got you a coke but the cat stole it

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Old 02-22-2011, 09:12 PM   #104
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Wow how scary.... I hope that something can be done fro Avy if not now in the future....Will pray for her!
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Old 02-23-2011, 12:14 AM   #105
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WE BELIEVE IN MIRACLES! ~~Nearly twice as many children die from Congenital Heart Defects in the U.S. each year as die from all forms of childhood cancers combined.
 
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Sorry Kristy I got you a coke but the cat stole it


You gave away my costume idea for MNSSHP! (No one else is going to know what I am talking about)
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