Wednesday, November 28, 2012

Luke is doing awesome!

So I never seem to find the time to sit down and write but here it goes.

Luke is doing awesome!  He is doing new things and other things better every day.  What has he been doing?

He stood up by himself this week!!!!
He is touching and squeezing play dough with help from a 5 to 1 countdown without protesting.  This is a first for him.
He is using more words with his speaking program on his iPad.
He is walking better in his walker.
He got really really excited to see the Christmas tree light sand other lights around the house.
You can ask him a number with 5 digits like fifty four thousand three hundred and seventy one and he will find the numbers and make the number.  He is highly motivated by numbers.
He is getting more curious.
I am sure there is more but that is what I have now.

We have a nurse to go to school to keep Luke safe and I really like her.  I am feeling like this is the last week I will be at school and then I will leave Luke here without me.  Ahhhhh!  I think I can do it.  Looking forward to the time spend with Hannah helps too.  I miss her little cuteness int he mornings.

We are moving forward with getting a consultation with a new pulmonolgist in an office that is going to start doing phernic nerve pacing which will use electricity to make his diaphragm act like a ventilator.  This means if we do this and it works Luke could get his trach out!!!

Hannah is progressing as well.  She is moved from walking to running and now climbing.  I have found her on the dining room table quite a few times when I come to get her after doing things with Luke.  She is doing great at building with legos, starting to string beads, and building with blocks.  Some of her favorite things are putting hot wheel cars down a track and playing with babies.  She is great at finding a smaller type object and having it with her all day.  She is also starting to put on her clothes by herself.

For the first time in quite a few years we have a real tree for Christmas.  Kevin really pushed for it and I am so glad he did.  It is 10' or so and he cut it from our backyard.  It has just lights on it right now but it makes me happy to just look at it.


Check out this Christmas post from a mom of a teenage girl with a hypoventilation syndrome that has had the never pacer since she was 3.  It is the 12 days of Sickmas and is pretty funny.
http://confessionsofasleepdeprivedmomma.blogspot.com/2012/11/the-12-days-of-sickmas.html

Pictures are coming when the insert photo starts working for me again.