Special carseat

It's so key to have good protection with minimal head control. We finally got the Britax Decathalon and insurance paid for it.

Gait trainer

Insurance paid for the RIFTON Gait Trainer to assist Luke in gaining his leg strength.
If you will note...he hates this thing. He is a very relaxed child and to have to 'work' is hard for him. Mentally he wanted too...but physically he could not. He was so mentally frustrated all the time.

9th-10th mths (Sept./Oct)

The next 2 months were really exciting for us as Luke really started to 'get it' and he was starting meet some physical milestones. Yes, he showed symptoms of fatigue and it was combined with frustration. It perplexed us. We could see he wanted to do things physically---but could not and would scream out. This is when we really communicated to Dr. Susan I. that we were 'concerned'.

Luke could lean up against the chair and had a hard time balancing himself.

He started to keep his paci in his mouth somewhat. It would still fall out..but he would start to hold it with his hand.


This was huge for us. Luke would turn the pages after we read them to him. He really understood the concept of books early, early on. (this was so exciting for us as we loved books ourselves!)
Dad rigged up Luke's red flyer wagon and off they went. My husband has not one time ever treated Luke special needs and has paraded him around the neighborhood with great pride.
Luke could reach but could not hold his arms out longer than 1/2 a second. (literally)
We were instructed that with low tone children you have to be very careful and get the most supported carseats. Insurance paid for this as we needed a very sturdy/padded one. It's called the Britax Marathon.
His smile was getting bigger!
He was starting to show strength in his head control when leaning up against my husband.
As you can see...his head control getting better.
Then...his 10th mth...he started to balance his head up. (he could keep it for a little while..but indeed progress)

Bath Chair

We had to get a special needs bath chair by Columbia Contour.
It's awesome. Luke loves it.

7mths-8mths July/Aug

Luke could cry but it's so key to note that we could not live without the suction pump. He would choke on his own secretions and therefore we were always on high alert.

This picture shows how Luke would turn his eyes to see me but struggled to get his head to turn.
We could set him up against pillows and he would balance himself. He could not move from this spot...but at least he was upright versus on the floor all the time.
This stroller was before we got the special needs stroller. I searched everywhere on the Internet for a carriage stroller that could lay back. I found one! It was only $81.00 and worth every penny. I had to see his face while walking as I never knew when he would start choking.
ECI gave us this special chair to position him and it was such a relief. With Luke, we didn't want all his secretions to settle in his chest..therefore, we were adamant about getting him upright most of the day.
My big smile. This is Luke smiling really big.
Our little man did not go one day without us thanking God for him! He is truly perfect to us.
Daddy and baby----a very loved little boy.

This picture really shows the low tone in his face.
Luke had to lay on my husband's shoulder to get his haircut. He could not quite hold his neck up and therefore this was the best we could do.
Luke would choke if transported in a standard carseat. Therefore, again...I had to buy a flatbed carseat so that his airway was more aligned and not so 'scrunched up'. And yes, he rode in front with me because I had to see his face. (dangerous....but we had no choice)

The 7th and 8th mths were the same mobility wise. His intellect was soaring as we could really see that. But his physical milestones were starting to show radical delays.

6 mth pics (June 2006)

The 6mth mark was quite fun. Luke would prop his feet on top of each other and that was cute. He was starting to get a little personality with his disposition physically and emotionally.

He also started sticking his tongue out. Not much...but we could see him moving his tongue more so than before.

Again, open smiles...
He still had to be positioned correctly before holding him. This is his Aunt Kim.

This is his favorite Nurse that we saw at the NICU reunion. As you can see, he had to be propped up on your shoulder as he could not hold his head up.
Ok, this was huge for us. We could balance him on the back of the couch and he would stay there until he lost balance. Of course, if he slid over he would dive in the couch and not be able to get himself up. (you had to watch him very carefully when doing this as it was not real safe)
For some parents, this might be scary. But, we could vacuum the house and he would be just at that exact spot when we got back. Luke could not roll.
p.s. Not that I ever left my child while vacuuming! I just wanted to give you a good analogy.
:)

6mth milestones as per above...

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.