Going back to the other "World" GKTW 3 Big Gives 5/14

[blessedmom4]

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!

 

[tinytreasures]

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.

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

Hope you have a great week too

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

 

[tinytreasures]

Sorry Kristy I got you a coke but the cat stole it

 

[brookerene]

Wow how scary.... I hope that something can be done fro Avy if not now in the future....Will pray for her!

 

[blessedmom4]

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)

 

[blessedmom4]

 

[tinytreasures]

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

Just remember you have to be able to "pack' them in your luggage
So glad I could help

 

[tinytreasures]

I had Avy's IEP meet today.
They really changed things up. The vision teacher will be going from 2x a month to 2x a week. She has already started some Braille but she now with the increase in time she will really start working on it. I have some paperwork to fill out to get her a free "book reader" I am not sure what it will look like. Then I can check books out for her and the reader will read them to her.
They ordered her something like a cell phone that will read to her too, I didn't understand what it does. I am going to go in when she works with Avy so I can learn too.
The Blind teacher gave me a computer program to download that will help her learn to type. It talks to her.
They want me to get her a i-pad because there are a bunch of programs that she can start working on. The teacher is going this weekend to a big conference about what Apps to get on it so I will have to look into getting her one as soon as the new one comes out.

Edited to add
The vision teacher said she have NEVER seen a eye do what Avy's is doing. She said the scar tissue is spreading and that is what is causing the blindness.

She is reading at Grade level *wiping tears here*
Her math is at 1st grade level.
Speech is her hardest thing. They don't think she will ever get her "R" at all. That is just one letter that will never come for her. She can't move her tongue the right way. There are several other letters she is working on but it is slow going because she can't move that tongue right. She can't lick a ice cream cone, because she can't stick out her tongue.

Now for the BEST NEWS I never thought I would hear.
They told me if she never learned another thing from today on, she has enough skills to live on her own
This is the child that was never suppose to amount to anything. My one goal in life has been to prove that dr wrong, and today my baby girl did that!!!!!!!!!!!!!!!!
She is my miracle.

 

[Mom2Miracles]

What great news about the progress and the new plans being put in place. I'm sure that eases some stress you must have been feeling. How exciting about the new readers as well.

This is the child that was never suppose to amount to anything. My one goal in life has been to prove that dr wrong, and today my baby girl did that!!!!!!!!!!!!!!!!
She is my miracle.

THIS is the best though.

 

[Tnkrbelle565]

Already commented on FB but that deserves from dancing bananas

 

[tinytreasures]

What great news about the progress and the new plans being put in place. I'm sure that eases some stress you must have been feeling. How exciting about the new readers as well.



THIS is the best though.

Already commented on FB but that deserves from dancing bananas

Thank guys
It was hard to hear the bad news but the good news totally makes up for it.

 

[EEs*Mommy]

I finally found you today woot! You know me from FP too

 

[tinytreasures]

I finally found you today woot! You know me from FP too

Welcome to Avy's thread

 

[Wonders10]

I had Avy's IEP meet today.
They really changed things up. The vision teacher will be going from 2x a month to 2x a week. She has already started some Braille but she now with the increase in time she will really start working on it. I have some paperwork to fill out to get her a free "book reader" I am not sure what it will look like. Then I can check books out for her and the reader will read them to her.
They ordered her something like a cell phone that will read to her too, I didn't understand what it does. I am going to go in when she works with Avy so I can learn too.
The Blind teacher gave me a computer program to download that will help her learn to type. It talks to her.
They want me to get her a i-pad because there are a bunch of programs that she can start working on. The teacher is going this weekend to a big conference about what Apps to get on it so I will have to look into getting her one as soon as the new one comes out.

Edited to add
The vision teacher said she have NEVER seen a eye do what Avy's is doing. She said the scar tissue is spreading and that is what is causing the blindness.

She is reading at Grade level *wiping tears here*
Her math is at 1st grade level.
Speech is her hardest thing. They don't think she will ever get her "R" at all. That is just one letter that will never come for her. She can't move her tongue the right way. There are several other letters she is working on but it is slow going because she can't move that tongue right. She can't lick a ice cream cone, because she can't stick out her tongue.[/B]
Now for the BEST NEWS I never thought I would hear.
They told me if she never learned another thing from today on, she has enough skills to live on her own
This is the child that was never suppose to amount to anything. My one goal in life has been to prove that dr wrong, and today my baby girl did that!!!!!!!!!!!!!!!!
She is my miracle.

Overall, it was a really successful meeting! I'm glad she is getting more help with the vision therapist and they are giving her some AAC to help. I use some programs similar to that. But more so I can make materials for my students than for the students to actually use it. One is called Writing with Symbols and its basically a word processor. You type and it says the word you wrote, plus you can also have a picture pop up for the word (more for the children who can't read).

As an SLP, I can say that /r/ is the hardest sound to produce. I tell it my students all the time because the frustration for some of them is unbelievable. Just curious, is she able to say any /r/ sounds well? Sometimes the initial /r/, like in "red" may be easier than the vocalic /r/, like in "bird" or "door". If she can say any /r/ sound very well (even if it is just one word), I have a trick for you Not that the SLP she has isn't trying her best, but we all have our own tips and tricks in our therapy bags.

ETA: in your school district, do the speech paths do any oral motor exercises for the speech? We occasionally do them with our students on the sly, but are unable to write goals for them. In private therapy, I do them all the time because often, it makes sense to strengthen the muscles and increase coordination.

But, for Avy! And for you for supporting and helping her along the way.

 

[blessedmom4]

I am quite tired; however, I wanted to make sure you knew I AM here reading and cheering for successes and praying for those needs that are still unmet!

 

[tinytreasures]

Overall, it was a really successful meeting! I'm glad she is getting more help with the vision therapist and they are giving her some AAC to help. I use some programs similar to that. But more so I can make materials for my students than for the students to actually use it. One is called Writing with Symbols and its basically a word processor. You type and it says the word you wrote, plus you can also have a picture pop up for the word (more for the children who can't read).

As an SLP, I can say that /r/ is the hardest sound to produce. I tell it my students all the time because the frustration for some of them is unbelievable. Just curious, is she able to say any /r/ sounds well? Sometimes the initial /r/, like in "red" may be easier than the vocalic /r/, like in "bird" or "door". If she can say any /r/ sound very well (even if it is just one word), I have a trick for you Not that the SLP she has isn't trying her best, but we all have our own tips and tricks in our therapy bags.

ETA: in your school district, do the speech paths do any oral motor exercises for the speech? We occasionally do them with our students on the sly, but are unable to write goals for them. In private therapy, I do them all the time because often, it makes sense to strengthen the muscles and increase coordination.

But, for Avy! And for you for supporting and helping her along the way.

I just posted on your thread I have no idea how I missed that your at a speech therapist.
No she can't do any R's at all.
She did get her first ever "sh" this week.
She just doesn't have a clue that she has a tongue at all.
She has both school speech therapy and private. Her private therapist, that has been working with her since she was 3 is the one that said she will never get the "R". She comes to all of Avy's IEP's.
She treats Avy just like her adult stroke patients because that how Avy's speech problems present to her. Avy has very bad word recall without visual clues. Where is why we are so scared with her vision going because she will lose that now. We are all scared her speech will suffer as her vision gets worse.

 

[blessedmom4]

Sorry you had such a long day and had to go to the MD on top of it all. I hope the hearing aids were ordered without incident. I hope the weekend is nice and relaxing (okay, I can dream, can't I).

 

[tinytreasures]

Sorry you had such a long day and had to go to the MD on top of it all. I hope the hearing aids were ordered without incident. I hope the weekend is nice and relaxing (okay, I can dream, can't I).

It was a longer day then we thought it would be. I really need to take pictures of her new "earring aids" they are so cute. Thanks for talking with me it past the time.

 

[tinytreasures]

I scanned some of Avy's baby pictures to share.
Her first day in our home.

First time we propped her to stand (it was hard to get this picture)

Wearing the dress we wanted her to be baptised in, but her adoption took way to long and she outgrew it

This gives you a idea how little she was right before her first birthday. She was wearing size 0-3 months and only 10lbs.

 

[Mom2Miracles]

Awwwe, she was such a sweet baby. Thank you for sharing!!