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Forum: Children with Special Needs

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  #1  
April 14th, 2009, 02:46 PM
~Coley125~'s Avatar Mega Super Mommy
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Hi,

Im Nicole. I have 3 beautiful little girls; Melody 5.5, Hailey 2.5 and McKenzie 15months. Kenzie is my special child. She is as of yet "undiagnosed" meaning we know somethings not right and we know she has a brain abnormality, but we don't know what it is or whats causing it or what it will mean for her long term.

She has been diagnosed with a cortical vision impairment which is kinda a blanket diagnosis to tell us that there is a 'communication' issue between her eyes and her brain. The nerves and everything are there and fully formed but for some reason her brain isn't able to process what she sees properly. She is considered "legally blind" right now based on her numbers (you know the basic 20/20 or whatever numbers that we all have) however I don't put much stock in her numbers just because her issue is with processing and those numbers are based on what you can see how far away (nearsighted/farsighted/etc).

As far as her development she is significantly developmentally delayed. She doesn't roll/crawl/sit/walk/talk. She is very much closer to a 3-4 month old in terms of development. She will eat some solids but not much and she is mostly on pediasure.

All that said she is the sweetest little thing ever. She is such a doll and everyone whose ever met her just loves her! It is frustrating to not know whats going on with her and having to deal with all the drs/test/specialist/etc (Im sure I don't have to tell you, you all know exactly what Im talking about) but we have faith that the Lord has a plan and a purpose for her life and until that plan is revealed we just do what we can to help her along and to care for her the best we can.


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Last edited by ~Coley125~; April 14th, 2009 at 03:03 PM. Reason: to add pics
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  #2  
April 14th, 2009, 05:40 PM
Ditzzy's Avatar Stupid Lamb;)
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Welcome back I'm so happy you posted. Please jump right in. I'm on a mission to get this board going.

McKenzie is beautiful! It sounds like you've had a rough time and I hope you get answers soon. Has she had genetic testing?
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  #3  
April 14th, 2009, 08:26 PM
~Coley125~'s Avatar Mega Super Mommy
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Yes she's had a slew of genetic testing done..everything came back negative or normal. We are taking her to a genetic specialist next month.
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  #4  
April 15th, 2009, 07:48 AM
quietsong's Avatar Just Another Slacker Mom
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She is such a beautiful girl! I can't imagine not knowing at all - I am bugged enough by our unknowns, and we at least have a cause for everything of Danny's. I hope the specialist is able to give you some ideas.
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  #5  
April 15th, 2009, 12:15 PM
iamkc's Avatar Platinum Supermommy
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Hi! I was in the Sept '06 PR with you! Welcome back to this board!

Kenzie is beautiful! I'm sorry that you don't have more answers for her. ALl the testing gets to be quite old, I know. Has anyone been able to give you any suggestions that you think may pan out? We have Milo's blanket diagnosis, which is hard to pin down with tests. Unfortunately, there are many unexplained things for him, and the docs here often repeat tests and don't listen to me about some of his issues. It's so frustrating!

I hope that you get answers soon! Kenzie is such a cutie-it would be grea to know how to proceed with treatment for her! HUGS!
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  #6  
April 15th, 2009, 01:38 PM
stacyp's Avatar Mommy to Andrew & Luke
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What a cutie!

I can understand the frustration of not knowing.... I hate that. Hopefully the specialist will be able to give you some answers.
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  #7  
April 15th, 2009, 01:39 PM
~~~Sara~~~'s Avatar Platinum Supermommy
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It's nice to meet you, Kenzie is a real doll. I hope you get some answers soon. Is she in therapy in the mean while?
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  #8  
April 15th, 2009, 01:47 PM
~Coley125~'s Avatar Mega Super Mommy
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Quote:
Originally Posted by iamkc View Post
Hi! I was in the Sept '06 PR with you! Welcome back to this board!
I remember you! How have you been? I don't think I knew you had a special needs child.

Yes she is in therepy 3x/week she's does vision, PT and OT, and were in the process of getting another developmental eval done.
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