Friday, March 30, 2012

Go, Luke, Go...and Hannah too!

This kids are on the move!

Luke is walking with his walker with very little or no help!!!  And he loves to walk in his walker and will walk in it at almost every opportunity.  At home he is usually limited because I can't help him all the time as I am busy with Hannah at times and my back can only take so much bending.  We visited school this week and since there were some sick kids in the classroom we had our PT time in the hallway.  We met a new PT that Luke seemed to take to right away.  We started by showing her Luke's awesome skills with his walker.  If you hold the walker he can get up into it and turn around all by himself.  Luke then walked for 45 minutes!!!  He walked up and down the halls, he walked down inclines and up inclines, he walked to look at the school doors and talk to another little boy through the glass (good socializing) and when asked if he wanted to play with a large ball or keep walking...he wanted to keep walking!.  It was awesome.  Yes there are lots of exclamation points in this post but I am so proud and happy for my little guy.  It has taken us a long time to get this far.

I have also been wanting to get him to use a ridding toy to get around because it gets him off the floor, he will be able to travel better with others, he can rest on it, he can stop to talk (he signs), he doesn't need as much supervision, and just seems like a good alternate mode of transportation.  We know another boy who has Moebius Syndrome that uses a ridding toy and loves it so we thought this could be a good avenue for Luke.   We have been showing Luke ridding toys and trying to get him on one for over a year.  He doesn't like new things very well and this not so new thing still wasn't his thing.  And after awhile of fighting with him about it I just stopped.  Well we started up after he started using his walker more and still had a lot of protest from him when he was on it.  A week or so ago I got him to hold the handles while I moved his feet, and he protested the whole time.  After seeing him do so well with the walker at school I thought that I would really like to try, with more effort on my part, to get him to use the ridding toy.  Today the first time on it he protested but was willing to work with me if I would read him a book at the end.  (Our Moebius Friend G's mom said she will work for music, well Luke works for books.)  During our trip to the bookcase and then over to the couch and back to the bookcase (with book reading at each location) he used his legs by himself a couple of times.  When Kevin came home we put him back on it and he rolled to me all by himself and then back to Kevin!!  I was amazed!  Very cool and hopefully he will continue this upward climb and meet a lot of his gross motor skills goals.

In other areas Luke is doing well too.  I was reading about teaching preschoolers to read on some blogs and someone suggested starting with the sounds as that is what they need to sound out works and not the names of letters.  Luke knows the names of letters and their order so I thought I needed to get cracking on teaching him the sounds.  Silly me, I think he already knew a lot of the sounds.  I worked a little bit, mainly with the front of the alphabet one day and the next day I just though I would quiz him (gently) to see what he knew.  He knew them all.  Wow Luke!  He amazes me all the time.  That little brain picks up so much more than I give him credit for.  He is working a lot with our OT on tracing letters and he really likes it and has gotten into tracing letters and things all the time.  And of course, his favorite letter is "L". :)

Okay, so I did say Hannah too.  Well Hannah is everywhere!!!  Luke was never like this.  He was happy with his toys and he was old enough once he was mobile to listen and obey, to some extent.  Hannah is crazy.  We are finally baby proofing our house.  Thankfully she has only two teeth.  We have baby monitor cords and the cords to the light sensory bin just laying around, well did.  I found Hannah chewing on them one day and if there is a cord out accidentally she will make a bee line for it.  She also like to eat the wheels on Luke's walker, Luke's shoes, Luke's HME, and basically anything she can get her hands on.  She actually pulled Luke's HME off his trach and started chewing on it while he was watching "Signing Time" one day.  We are working on getting Luke to be more assertive and telling her "no".  She would also get into the sensory bins if she could, and has gotten close.  She pulled herself to a knee on our large box with activities all around and the wire and beads at the top.

So our house is moving a lot more, which is good for me, but can be exhausting to deal with Luke and have to make sure Hannah is in a safe place.  She ceased to be contained by her swing or a rocking chair bouncer thing when she got mobile.

Here are some pics, although not recent, we just haven't had time to process them, of the kids.
Luke in his walker!

Hannah going for the box of fun.

Containing Hannah in the Moby Wrap.

Sensory bin!

"Look mom, no hands"

Hannah not being contained by her rocker and working on figuring out how to turn the vibration on and off.

Thursday, March 22, 2012

Tubefeeding book

A book was just published by a tube feeder for Tubefeeders and their families.  It is a guide on all things tubefeeding.  Check it out here https://www.createspace.com/3811540.  I have followed the author on his blogs and in forums and he is all about sharing knowledge and making things easier for tubbies.


I am researching AAC programs (communication programs) for Apple and Android mobile devices.  Watch for a review blog coming soon.

Oh and here are some pictures of the cuties: no super new ones but cute ones.

I will eat anything!

6 month shot

Gotta love a good tractor.

Luke and his flip up book.

Making a tower.

"Wow mom look how high"

Reading with daddy.