Sunday, November 28, 2010

Amelia and Max

Here are the photos of Amelia with Max, our cousins' dog.  It's the first time I've ever seen her take any interest in an animal.  It's so cool!


Take note of Amelia's new shoes and a BIG THANK YOU to Bubbie and Zadie for early birthday/chanukah gifts.  They're actually orthopedic shoes that typical kids in Poland wear.  There are numbers on the bottoms and as they wear away the numbers doctors/therapists can tell whether the child is supinating or pronating and there are inserts that you can buy to put in the shoes to correct the child's gait.   Amelia's PT uses them with the Therasuit Therapy that Amelia receives 2x's weekly.  Amelia walks really nicely in them and can't turn her ankle in them.   They're pricey but really easy to get on and off, comfortable for her to wear all day and quite stylish, I think!  If you're interested in them go to the site


Friday, November 26, 2010

What's New?

Happy Thanksgiving to everyone.  This is the first year in a long time that we weren't trekking from Nestor's family in NJ to my family in MD to be with everyone at once.  Very strange.  Instead we drove about 3 minutes to Nestor's cousin's, The Rosario's house and had turkey day with them.  It was truly delicious and we had a wonderful time.  The turkey was tender and juicy, the mashed potatoes and gravy smooth, the pumpkin pie was almost as good as my homemade (altho I think Nestor was just being kind because he kept saying "there's just some flavor, some spice in here that is spectacular!  I've never tasted anything like it in pumpkin pie"), hmmmm and the company was outstanding.  Anywho, it was the perfect new tradition for our new hometown. I am so thankful for our family and friends -- here and across the country!  I thought of everyone like crazy yesterday.

So yesterday I was talking to my folks (they each pick up an extension and it usually results with someone not being able to hear well, or one talking over the other -- tons of fun) and of course the conversation eventually rolled around to shopping.  This is the part where my father usually says "well, anything else before I hang up and let you ladies talk?" Only this time he said "is Amelia doing anything new?" To which I stopped in my tracks and thought for a half of a second and said "yeah, actually, she is."  I then went on to talk about how Amelia seems to be demanding a little more from the world around her and responding to it more than she used to.  For example, when she's on the feeding pump, sitting in her chair and watching her cartoons and I sitting next to her reading a magazine, she'll reach out and pull my shirt or arm or hand to her -- demanding my attention or giving me a hug or kiss.  Also, Amelia seems to be a much easier audience than she has ever been.  She laughs and reacts much more with a lot less effort on my part (for those of you who don't know, it's called "The Mommy Show" and it's the ridiculous things I do desperately trying to get a laugh or smile from her).  It's very exciting! 

Last night at dinner we all encouraged Amelia  to pet The Rosario's family dog, Max and she did.  The difference is that she really reached for Max.  We all laughed and encouraged her some more and she reached out for Max again and again and again and again.  We couldn't believe it.  She was actually reaching out for him and really playing with Max's fur.  We've been around a lot of therapy dogs, regular dogs, cats -- Amelia even used to have horse therapy (Hippotherapy) and has never really bothered with animals before.  This was the first time I've ever seen her really interested in an animal.  I think there's a lot to be said for how she's beginning to view the world outside herself and her toys.

But I have to say that one of the most remarkable moments to date happened this afternoon while Amelia was on her feeding pump for lunch.  So let me set this up by explaining that Amelia's nutrition  is 100% via her gastrostomy tube.  She has a high risk for aspiration and chronic pnuemonia's due to aspiration of her own secretions.  So although I love giving her flavors of food (she had literally a drop from the tip of my finger of gravy and cranberry sauce last night at dinner, which we wipe out of her mouth after with a cloth) and we try to give her a lollipop 1x daily.  It really thickens and causes much more secretions though, so there are many days that I won't give her the lolly because I'm afraid of her hyper-secreting and aspirating.  The last couple days I haven't given her the lollipop because she had her flu, tetanus and whooping cough shot on Wed. and she seemed slightly cranky -- I didn't want to mess with her.  So she's in her chair watching her cartoons and crying.  Just howling and crying and Nestor and I are at a loss trying to figure it out.  In one motion she put her hand up, pointing to the cup of lollipops I keep next to the TV and when I asked her if she wanted "lolly" she signed "give me" immediately!  We are both so blown away!!!! Amelia signing "give me" were her first words, so to speak.  She's only really used them when prompted, ie. "do you want the red ball?"

To see her put "give me" into real action, proving that she understands the context of using those words and how to utilize them on her own, gives me so much hope in looking to the person she is and who she is becoming.  Baby steps friends, I am truly thankful for them. 

Monday, November 15, 2010

Sunny and 75 Degrees

It's the strangest thing to be sitting here, in November, wearing cargo capris and a little cotton blouse.  I haven't quite grasped the concept that although it may get chilly at's going to be sunny and 75 degrees most days for us from now on.

Amelia is continuing to adjust really well out here.  Her newest way to give Mommy and Daddy (and nurses, friends, family -- whoever happens to be standing there) a heart attack is to "rock and roll".  She is probably around 45 pounds now and is learning to throw her weight around.  Amelia sits in her chair for her feedings (similar to a Trip Trap Chair) or in her stander (which she is just growing out of and we desperately need to get her a new one) and throws her entire upper body from side to side! Nestor has been doing a recur on the show "90210" and asked one of the Grips if he could have a 35 pound sandbag (they use them on set to weight down lights, screens, props, etc, anything and everything really).  The Grip said to Nestor "What do ya want it for?  To weight down your garage door?" Apparently that must be a common request.  Nestor had to politely explain our unusual circumstance and need for it.  Needless to say, we now have her chair weighted with a 35 pound sandbag -- but no joke, I think we need another one!!!!  It's a real discovery for Amelia to feel her body and it's movement in space.  AND, she is moving it quickly!  For those of you who know Amelia, she doesn't do anything quickly.  Her movements are slow and somewhat floppy, so to see her bounding from side to side is exciting. We're not exactly sure how to work with it.  Clearly Amelia is needing that stimulation, and I also think it's cool that she's found a way to provide it for herself -- but it's just too dangerous and scary to allow her to do with reckless abandon.  I've started putting a velcro band diagonally around her like a seat belt when she's in her chair, she still does the "rock and roll" but can't get up as much momentum so the chair legs no longer leave the ground!  -- as for the stander, I just put my hand on her shoulder and encourage her to stop rocking the whole thing from side to side (the stander is on it's last legs and I'm waiting for it to start splitting apart -- like Forrest Gump's leg braces in the movie).  Anyone have any suggestions/ideas?

Amelia is really getting expressive in her vocalizations and facial expressions.  She makes lots and lots of faces while she's playing.  When I talk to her she'll scrunch her nose and mouth up in response a lot of the time.  Her teacher at Lokrantz, Carolyn is one of the top teachers at her school and Amelia is doing so well in her class.  Carolyn is very well versed in Augmentative Communication and Amelia has a 4 button switch at her school table that she uses each day.   Also, Amelia has a health care worker who is always with her named Esther.  She's really terrific with Amelia and gets her up and around the 3 hours Amelia's at school.

Nestor and I were able to steal away last weekend for a couple days, to Palm Desert for a Celebrity Gold Tournament benefiting Childhelp.  It was a wonderful getaway for a wonderful charity.  Childhelp is for children who have been abused and/or neglected. There were so many precious kids there and this event raised so much money to help with their facilities and programs.  We were very honored to be there and be a part of it.

Here are some photos from Halloween at Amelia's school. Nestor is not a huge fan of dressing kids up unless they are part of the dressing up process.  So my compromise is to put her into an outfit that is festive and exudes the "Spirit of Halloween."  I thought the pants and top were hip and the skirt was actually chosen by Miss Amelia at a recent trip to I guess she was actually a part of the dressing up process (so there!)

Charming the crowds in the Halloween Parade at school!

Seriously Mom, get the camera out of my face please!!!!!