Thursday, March 1, 2007

15th/16th mth (Mar./April)

Here is a video of how Luke would sit up and then just fall back. We had to always have pillows behind him. You'll see in the pictures below as well.




Luke wanted to do wagon stuff and have Daddy take him on rides. Dad always put special pillows behind him as 1/2 way through the walk he would slide down into the wagon and had zero trunk control to get himself up.


As you can see, he got tired 1/2 way through. So, he would lay back.

Again, Luke could sit up but he would eventually start slouching and have to be respositioned. We could never walk away from him at any moment besides flat on his back.
Luke's personality was emerging and his strength issues were really starting to show. We really noticed the fatigue and frustration.





At this point, he could cry somewhat without suctioning.

Waking up and pulling his tube. (for us..this was a milestone)

Cognitive development was so there. He could hold his paci and figure out how to make things happen with his feet and hands.

We tried Horse therapy at this point but his weakness stopped us from going after a few weeks. He could not handle the crying on the horse without us having to stop after only 5 minutes. It was again....frustrating. We will try back this fall when it's cooler.
Luke loves stimulation --OT work, textures, balls, cloths, anything that has textile touch..he loved it. He was not averted to any type of toy...he just embraced all that came his way. We give credit to therapy early on for this. (And God of course!)



We finally got a Gait Trainer to help promote strength in his legs. He did not like it at all. This equipment constrained him and he missed the walker.
His fatigue showed again.Began Vital Stim therapy. I cannot tell you how much I believe this has helped us prior to medication. We saw radical results in his 'managing of secretions' with Vital Stim therapy.

Video of Luke doing Vital Stim:




We were still asked...."is he sleepy" all the time. The time of day here is 4:00pm (after a 3 hour nap)
His special needs wheelchair was a Godsend. Literally. Luke would 'slide' and 'slip' out of regular strollers. So, this really helped as you can see below.

Easter picture ---of course!



Monday, January 1, 2007

13th/14th mths (Jan, Feb 07)

Big smile

Luke was sitting up SOLO!!
(we had to put him in that position--he could not get to the sit up position on his own)
He was showing some 'baring weight' with bouncing up and down in his car.
Starting to reach higher

The 3rd failed swallow study attempt. He choked, coded and had to be emergency suctioned. We knew he would fail but it was our only way to get Vital Stim approved.
His legs were still unable to bare weight for very long here. Maybe 2 seconds long.
HUGE MILESTONE: He started to push himself backwards in his walker. He loved this new found freedom.
Sitting up on couch and leaning forwards and balancing his head control. (huge)

Wednesday, December 6, 2006

Wednesday, November 1, 2006

11th/12th mth (Nov, Dec)

Luke is still 100% gtube fed. Zero feeding orally. He's in speech therapy 3x a week.

Luke was able to sit up in his bumbo for a brief moment but he would fatigue.
Luke is in special needs bathchair.
He turned 1 year on Nov. 21st