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

Friday, October 6, 2006

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.

Friday, September 1, 2006

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)

Thursday, July 6, 2006

Bath Chair

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

Saturday, July 1, 2006

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.