I thought I would have to teach my daughter about the world; turns out I have to teach the world about her. They see a girl who doesn't speak,
I see a miracle who doesn't need words.

Friday, January 21, 2011

Another Bust

Uggh. Wish I had a better report on our speech therapy appointment, but it was pretty much the same as last week - zero interest in participating. I decided to take a video anyway!

I have another video that wont load for some reason, but Lisa is trying to hold her head to get her to look at the computer but  instead she looks upward totally avoiding the screen and then she closes her eyes....stink bug!

We are going to add another speech session in on Monday's so she will at least have two hours a week working with the machine.  For years we've been trying to get her to look at the physical object to let us know what she wants so she's frequently looking for the actual object - even though the icons on the computer screen are actual pictures of her toys that we uploaded.  Lisa tells me to be patient and that it will come in time - easier said than done!

Saturday, January 15, 2011

It Had To Go

I got home from work yesterday and Alex had pulled her pony tail out and had drooled all in her hair.  Her hair is very thick - it's beautiful, but man is it a chore!

We've donated her hair in the past to Wigs for Kids, but I couldn't take it anymore, I put her in the car and drove straight to the Hair Cuttery! 

I think she likes it!!!

Soooo much better!

Friday, January 14, 2011

Speech Therapy

Yesterday's speech therapy appointment was pretty much a disaster.  Of course I had my camera all ready to go and record her using the eye gaze system so that's probably the reason she was not compliant, at all.  It is so frustrating and exhausting to sit there and try to mentally will her to do what I want her to do.  She had absolutely zero interest in looking at the computer yesterday.  She was frustrated and so was I!  At one point I, KIDDING, of course said "I'm so beating your butt when we get home, Alex" - and do you know what she did?  She looked at me, frowned and started crying - and I mean crying - crocodile tears and all.  I felt SO bad.  Alex has never had her "butt beat" in her entire life, so why that made her cry is beyond me.  I'm guessing she felt my frustration.  I KNOW she can do it, she's PROVEN she can do it.  I know this all new to her and it's going to require baby steps - but when you want your child to do something and succeed, patience isn't always easy.  Poor girl.  The thing is, she KNOWS what we want her to do - and her blatant eye aversions are so obvious.  Zach had stayed out in the waiting area with a friend of mine who was entertaining her youngest while her oldest was having physical therapy.  He stayed out in the lobby for about 40 minutes (writing a 'book' for Alex, but that's another story for later!)  There was about 15 minutes left to her session when he came in her treatment room and as soon as he walked in she turned her head to look at him and giggled.  Lisa, her therapist, said, Alex, show Zachary how you can use your words and ask for pudding - so she looks at Zach, looks at the pudding icon and as soon as the computer said "PUDDING", she turned back to look at Zach and smiled at him....as if to say..."OK, see Zach, I can ask for pudding!"  Sigh.  I SO wish we could just get her to the point we need to for justification for a loaner machine.  I can't help but think of the great strides she could make if we were using it every day rather than for an hour once a week.  Baby steps....I have to keep reminding myself...baby steps!

Wednesday, January 12, 2011

Another Christmas Celebration

Since school was closed yesterday for 'inclement weather', and we got nothing, I thought I would post pictures of Zach when we actually got some snow! :)  It's very hard for Aaron and I, who grew up in New York and went to school in blizzards, to get accustomed to the crazy school closings here when there is little, and in some recent cases, NO snow!

After Christmas we had our Christmas celebration with Jennifer and Brad, our other 'adopted family' as Jennifer likes to say.  Zach absolutely adores Brad.  Brad is usually completely exhausted after about an hour with Zach because he plays any and everything with him.  I wish we could really adopt them and move them in with us, they're both absolutely wonderful! :)

Brad and Zach both love Nerf stuff, and Zach actually picked Brad's present out all by himself...obviously great minds thought alike!

Alex is very much into baby dolls recently.  She picks them up and kisses them or holds them very tightly to herself.  Here she is kissing her new doll from Jennifer.

Books are her other obsession!

So lucky to have such great people who love our kids so much!

Friday, January 7, 2011

Better Late Than Never!

So I'm a week behind, but HAPPY NEW YEAR!!!  We had a great time at home with friends and the kids.  I know I've said it before, but one of our biggest blessings is the friends we have in our lives.  The friendship, support and love is second to none.

Zach and his best buddy Sean

Silly Boys!

Me and Noreen

The guys and their boys!

The girls!

The girls and their boys!



Leslie and Scott

Sheila and Lee

I have to say that 2010 was a good year for Alex.  It was by far the healthiest she has ever been, for the first time there were no hospitalizations for her!!  Her eating by mouth is completely where we want it to be, she is up to 5 oz. per squeeze bottle feeding and she's made huge gains cognitively.  I couldn't ask for more.  I hope 2011 is just as promising for her, I'm excited to see what this year has in store for all of us.

I hope each of you have a blessed, happy and healthy new year.  Thank you for taking your time to check in on our blog and sharing our crazy life with us!