Sunday, November 13, 2011

whats in a name....

EVERYTHING....
Listen very closely.  CONNOR SAYS HIS NAME.  You will hear the hard C a pause and NER.   It sounds like K   NER.  
We are squealing like girls because we are so proud and Connor is acting crazy because well....hes 3 and thats just what three year olds do.

Sunday, October 16, 2011

Look what I can do now...

Saturday, September 10, 2011

someone I love...


Someone I Love

By Lori Hickman
Someone I love relies on me in ways you will never understand. Someone I love endures pain and challenges that break my heart and renew my spirit at the same time. Someone I love is unable to advocate for themselves for things that most of us take for granted. Someone I love will never have the opportunities that every child should have. Someone I love will need unconditional love and support after I am gone - this frightens me to the core. Someone I love encounters pity, stereotyping responses, and prejudice at every turn, because they look, act, and/or learn differently than others. Someone I love has needs that require me to allow "outsiders" to have power and input in areas that should be mine alone to meet. Someone I love will continue to look to me for everything in life long after other children are able to assume a place as part of the world. Someone I love has needs that require more time and energy than I have to give. Someone I love has needs that mean I am not able to meet basic needs of my own. Someone I love has needs that have become the driving force behind major decisions my family makes. Someone I love has changed me in ways I will never be able to describe. Someone I love has taught me about love and about the really important things in life...
And still others don't understand what it is to be me.. they aren't living in my skin.

Monday, August 15, 2011

A bit sour yet oh so proud...

My little boy was just diagnosed with Spastic Cerebral Palsy and is now going to be tested for seizures.  The doctor has already pretty much made the determination that what we are seeing in Connor is seizures, we just need to do the 72 hour EEG to make sure they are not harming him.  I think she wants to make sure he is not an epileptic.
He has quite a few very spastic movements he does on a daily basis where he basically loses all control of his muscles and he just shakes.  Its usually due to being excited.  We always thought it was just him being adorable. Apparently there is a technical term for it (Which I cant for the life of me remember what it is) and it is also related to seizure like episodes.
Connor will be hooked up to an EEG machine for three full days later this week into the weekend.  We will be monitoring his behavior via video as well.
As with a lot of other 3 year olds, Connor suffers from very bad night terrors.  This is common for the age, according to the neurologist but we will be video taping his sleep sessions along with the EEG to make sure there is nothing else going on (seizures) while we are sleeping in the other room.
I am secretly hoping that the EEG comes out PERFECT.  The doctor informed me that if she gets nothing (which in most cases with kids with developmental delays we might not because they don't happen frequently enough) he will just be monitored to make sure the seizures don't progress.  If she does by chance see something, we shall go from there.
Connor doesn't seem to care much about whats happening.  This is his life and he wouldn't have it any other way.  Secretly, neither would I.  :)
Someone decided that Eric and I would be the perfect parents for this very special child.  I personally think it is a lesson.  I have amazing patience now and have more sympathy for situations then I ever realized.  You never know what life is going to bring you and you are most likely not prepared.  You will learn more then you ever thought possible and this child will make you realize that different isn't always so bad.  As he gets a little older, things are getting tougher as we start to notice more and more but that will never change who he is and I would be upset if it did.  :)

Friday, August 5, 2011

A new word...Thats progress

We have a new word....Purr (for the kitty cat that is).  It sounds more like PUH but you get the idea.
Here is video number two.  This is from the end of the second week on Nutriiveda.

Some new things Connor is doing-
He is associating words with emotions.  He has NEVER done this before.
We went to the store today and Connor got a balloon.  He was so excited.  He told us later in the car-"PUH". and then made the sound of a cat purring.  I asked he what he was talking about and he said "lala (Shirley the kitty cat) PUH".  "Are you happy you got a balloon and are purring like Shirley when she is happy"? Connor-"YEA"!!
AWESOME!!!!

Saturday, July 30, 2011

A first....

Connors first movie (in the theater)
Winnie the Pooh

Didnt think it would be such a hit but he keeps making bee sounds and signing more meaning he wants to see more of that honey pot.  :)



Thursday, July 28, 2011

lets communicate...

We are on a mission to help the Con man become less frustrated with not only himself but us as well.  I have started him on a product called Nutriiveda. It is an all natural food supplement used in adults for weight loss but proven in children to help improve speech.  I have seen so many videos of children taking Nutriiveda (NV) and how much it has improved their speech and their lives that we just couldn't pass it up.  I have not seen any videos of children with chromosome abnormalities or of children with other problems on top of speech issues but I am sure they are out there.  I truly do not believe this will all of a sudden make Connor talk because as well all know, he has to learn to do that but I do feel that this will give him the confidence and ability to learn the words to help him communicate with us.
I am willing to try anything at this point.  I am having a hard time understanding the grunts and crooked pointing and would love just one or two words to come out of that perfect little mouth of his.
He has been on NV for two weeks now.  I will be taking a video of him later today or tomorrow and posting it here.
The video here is taken the night we started him on it.
I have noticed a major difference in the sounds he is making and found he is falling less which is awesome.  He will go on and on and on for about 5 minutes now just babbling badabadladababa......
this is all brand new.  :)
Here is video number one prior to NV



Thursday, January 27, 2011

Follow that bird...