Some videos

We had to give back the communicator because the 2 week trial was up, but we will pursue getting Jackson one of his own.  Here are a couple videos of him using it.

The first one he was again playing the chase game.  When there are 4, 8, or 15 squares he does very well and hits his targets easily.  When there are more than that it gets pretty hard for him, but as you can see he put a lot of effort into it and is eventually able to hit even very small targets.

The second video is when he is making his music play.  He hits play and then hits next twice so he could hear a Justin Roberts song.  He just LOVES his music and he REALLY LOVES being able to control it himself.

And I had to put one of Zoe up too.  She likes to play very repetitive games.  Her favorite seems to be putting people (Daddy is her most willing victim) to bed.  She gets a pillow, tells him to lie down, covers him with a blanket, tells him to close his eyes, kisses him good night, and then tells him to snore.  It's kind of weird but it makes her happy.


Here is another repetitive game she was playing with me today.  Sorry for the goofy camera angle but she gets really upset if she sees me filming her so I had to hide the camera.  She is putting a band-aid on my hurt leg...over and over again!

Sassy kid!

Jackson was playing music on his communicator and it was getting a little bit loud.  I told him I was turning it down a little bit and with a big grin on his face he proceeded to turn it back up! :)

I am so pretty!

 She got a pretty new headband and she looked so good she decided to give herself a kiss!

Jackson and his communicator

He is doing well with it.  I got it set up so that he can control a playlist of songs which is VERY motivating for him.  He knows exactly where the music is and gets right in there.  The first song on it is "Hey Bulldog" by the Beatles which is one of his favorites and makes him smile and laugh.  He can play, pause, go to the next song, go to the last song, and turn the volume up and down.

Here is what his home screen looks like.  Each of the buttons goes to another page except for the yes and no buttons.

Some things you just aren't expecting

Jackson had an appointment at Shriners today.  It was so he could get casted for his AFOs and TLSO.  But someone did not get that message so we had to wait and wait and wait for the doctor.  Seriously, no place can make you wait like Shriners.  So finally we get into the room, and when the doctor came in and realized why we had come he was very apologetic that we had to wait needlessly for so long.  But he wanted to take a quick look at Jackson since he was there anyway.  Then he starts saying that clinically he feels that Jackson's right hip is worse even from 4 months ago and that we need to start thinking about surgery.

Um, WHAT!?  I just was not at all expecting that.

Not that I am shocked that hip surgery has come up, it is pretty common in kids with severe CP.  I just wasn't expecting to even be thinking about it TODAY.  We only came in to get casted for new braces!

We don't have to decide to do the surgery.  It is possible that his hip may not eventually become dislocated and even if it does dislocate that it may not cause him pain.  But if it does become dislocated (and that is what the doctor feels will eventually happen) and it is causing him pain, then it becomes much harder to fix it than it will be before it happens.  So we will most likely be doing it.

The procedure is called a varus derotational osteotomy.  Basically they will cut a wedge shaped piece out of his hip bone to change the angle of it so that it will stay inside the hip socket.  I usually like to link to these things but I am not finding a nice simple description or illustration I like so I may keep looking and link later.

Anyway, after that we did go get him casted.  First they casted his feet and legs for his AFOs.  He picked out red straps with a space themed ribbon.  He decided he did not want any transfer patterns on the outside of the AFOs.  He was very definitive that he just wanted them to be white.  Here he is being casted.

Then the fun part (read sarcastically!)...to get casted for his TLSO, he had to put on a very tight gauze body sock and then I get to balance him on that contraption you see in the background.  They call it a table, but it's not a table.  It's a fabric strap strung up that he balances on while his feet are up on the wooden part.  It is CRAZY!  This is our second time doing it so it wasn't quite as bad this time.

His other orthotist always measured him for his TLSO instead of casting him.  It is less precarious to measure for sure, but it is actually quicker to do the casting and I think it fits better when it is casted too.

Here is a better look at the "table".

A funny story:
While we were in the waiting room forever before the appointment, a child life person came through with a cart of toys for the kids.  I looked through it and there really wasn't anything for Jackson.  The books were all coloring books which he can't really do, there were little toy cars which he already has and can't really use anyway, there were stuffed animals but they were all too large or too girly. I just do not need more crap in my house so I was about to pass but she said she had a snow globe for him back in the office that was really cool and she ran off to get it.

So she brought it back to Jackson.  It is NOT a toy snow globe for kids.  It is a big heavy glass and ceramic snow globe of the town of St. Charles, IL with a music box in it.  I think it is pretty weird and ugly and I tried to convince Jackson that he didn't want to bring it home.  But Jackson really likes it and he wanted to bring it home.  So here it is on our mantle...sigh.

We are constantly wondering where she gets this stuff!

So we were at the mall today buying Jackson a Chicago Bears hat.  Of course Zoe had to have a hat too..."Baby hat!"  So we picked out a cute little pink ball cap style hat for her.  Lee put it on her while we were waiting in line to pay.  She then takes it off her head and proceeds to turn it around so that the brim was in the back.  Seriously, she isn't even 2 yet!

If you ask her what her name is she will tell you "Zoe" and then she will think a little bit and tell you "Diamond".  One day she when I asked her her name she said "Zoe" and then asked me "Baby too?" because we often call her Baby, she likes to be called Baby, and she often refers to herself as Baby (like in the hat store).  It made me laugh...we then talked about nicknames a little bit. 

ECO2 with ECOpoint trial (eye gaze communicator)

Jackson got his 2 week trial of the ECO2 yesterday. He is doing pretty good with it so far.

Jackson gets really tired sitting up in his chair very quickly so I figured out how to set it up so he could use it lying on his futon (thanks, Joan, for the idea!). Here is a video of him playing "chase me", where he uses his eyes to find the target. As he plays longer, the target gets smaller and smaller. As you can see, Zoe really want to get in there and play with it too.

What a sweet lil sister

Zoe decided it would be nice to show Jackson all her "friends" (the ocean creatures) so she brought them all over and put them on his futon where he could see them.  She even put a monster in each of his hands.  Then she showed him her weebles and told him what each of them were.  Very sweet and Jackson liked it a lot too.