Luke 5mth pics (May 2006)

At 5mths he was getting to be more playful with the toys and coo'ing at the TV video's. He would start to laugh at a very weak level...but you could indeed tell he was laughing.

We put mirrors and tons of toys around him to promote positive stimulation.

This is a smile!
Luke would cry as well. I was impressed by his facial expressions even with his low tone.
We were working on tummy time and he did not like being on his belly. You could really tell he wanted to 'raise his head' up but could not.

At this point, a mother's intuition kicked in and I knew with all my heart that my child did not have neurological problems. I knew it was muscular and the only way to describe how I felt was massive frustration for my child. I knew he was 'in there' but could not lift or raise when he wanted too. It was so perplexing and yet I had hope/faith that someday....

Luke getting upset and frustrated here.
I wanted to point out his birthmark on his right leg. (see it?) It's a very coffe latte color and I think it's important to note as I read that could be a sign of a neuromuscular disease in my 'first year baby' book. (I never repeated this to a soul.....it made me nervous)

This is how I had to hold Luke. More like a football grip and I actually got quite good at carrying him around the house with his low tone.
Family picture on Daddy's birthday

Floor time--he could semi-roll to the left and right but not very strong. He could turn his head left and right very well.
First tooth
Playing with toys and chewing them.

5mth milestones:

Same....more like teething, rolling to the left/right and overrall cognitive development was starting to show.

Luke 4mths (April 2006)

I think it's important to note that in his 3rd and 4th months Luke could not ride in a standard infant carseat without choking. His low tone would just 'curl' up and therefore when he cried in his carseat..we would have to stop as he would start choking/turn blue and then we had to put oxygen on him. (yes..very scary)

I found this carseat off the internet for $60 and it was a FLAT BED. It was not the safest carseat in the world, but it worked! When we had to drive to doctor's appt's....he would be just fine. It was a life saver. It's FLAT with zero raise and/or tilt.

By this time, Luke as getting to be more active with his kicking and hands.

He could smile but it was a very weak smile and lasted about 1 second...
Sleeping was still on his side and propped up as much as possible.
His hands were slowly healing as we stretched his contractures out everyday. (4x a day)


This picture is probably one of the most 'right on' pictures showing his global hypotonia. We had to learn to carry him to accommodate for his low tone. He was a very happy baby...just very low key and relaxed.



We had to hold his passy in his mouth from 0-4mths. When asleep..we would prop it.

Bathtime was great for Luke. He loved the water.
A picture of Luke sucking on his index finger. You could tell he wanted to suck on his thumb..but his contractures and low tone in his hand was limiting him.

Luke sleeping on his side.
4mth Milestones:

About the same, kicking his feet, his hands and more verbal. His babbling was very weak as was his cry. In fact, he never really had to cry..we jumped at every sound.

Luke 3mths (March 2006)

With Luke being home after 94 days in the PICU/NICU, we opted to get him a floor gym which would promote reaching. As you can see, he could lay there and hold his link-a-doos and watch TV. This was his most popular position....watching Baby Einstein while holding his toys. He really loved it.

He could take the link-a-doos and swing them back and forth. This was great to see as we knew he was promoting play with the toys.
Sleeping was a difficult task. He was not 'strong or toned' enough to keep his pacifier in his mouth. So, we had to prop it in his mouth during sleep. (trust me...we kept the pulse-ox on the entire time) Also, we had to manually roll him over during the night so he would not ache from sleeping in one position all night long. This made for many long nights as he was very accustomed to 'softly moaning' and this was our cue to roll him. (he was very smart early on!)
Luke started sucking his index finger early on. I know that in the womb he would suck his thumb as we have a sonogram proving this. However, post birth he could only get his index finger in his mouth due to his low tone of turning his hand just right.
His open mouth showed his tone during boppy time.
Luke could turn his head left and right early on. Not overly turn...but enough to see what was going on.
Easter Sunday. A special day for us as parents. He was our miracle baby and we celebrated the resurrection of Jesus Christ with our little man.
Luke could take toys and lift them up to his mouth on the floor. This was great for him.
A picture of Luke's gtube and nissen fundo scar.

Our first portraits of Luke.




Milestones at 3mths:

• Taking toys and chewing them
• swinging the link-a-doos back and forth
• babbling
• kicking his feet
• lifting his arms from elbow and up