Tyler

Well -- he's been admitted back into the ICU at Scottsdale Osborn. He had a sinus infection that wouldn't clear up and his asthma kicked in.

I'll post more soon with some photos and updates.

:)

Story Time . . .

Every day at lunch time -- Tyler and Arlington wait patiently for Craig to come home to eat, rest and read a mid-day story.

Tyler and Arlington take turns choosing which story is to be read.

Today it was Arlington's turn to choose. She picked 'It's Not Fair' featuring Ernie and Bert.

Tyler continues to improve every week. Except for a bit of residual leg weakness -- Tyler is nearly back to health.

feeling better all the time

Craig, Tyler and I recently attended a luncheon where Tyler received an award and recognition for being the 'Best Participant' in his day program.

Throughout the event I couldn't help but watch Tyler an see how far he's come since April of this year.

As Tyler was being celebrated in front of the audience -- he was clapping at himself and saying 'woo-hoo' the entire time.

He's very proud of himself for fighting as hard as he did this summer.

We're very proud of him too.

Life without Tyler just wouldn't be complete.

Tyler is the boss now

Tyler has decided that enough is enough.

He has taken it upon himself to remove the BiPap support at nighttime. He's refusing to keep the small tube attached to his trach. So -- we have no other option than to leave it off of him.

He's been off nighttime support for nearly 10 days now and is doing very well.

In addition to removing himself from the BiPap -- he as now taken the trach collar off.

The trach collar is connected to a small tube which supplies a small amount of supplemental oxygen.

When he came home from the hospital this last time he was needing five (5) liters of oxygen in addition to 12-hours of support at nighttime.

I guess Tyler knows best. His O2 saturation's are staying in the mid to high 90's and his many doctors are pleased.

The O2 saturation level is a measurement of how much oxygen is being supplied to the body at any given moment. A small sensor is temporarily attached to his fingertip and a light reads the oxygen level. Craig and I generally run from 97 to 99% oxygen levels on room air - which is 21% oxygen. The additional oxygen that Tyler is receiving bumps him up to about 23% - 24% oxygen.

He's come a long way from earlier this summer and our hope is that he continues to improve.

The real treat for him this past week was when he got to return to school for two days in a row. Although he only stayed for two hours each day he was very happy to see all his friends.

reunited

Following an extended vacation to the northwest -- grampa and Tyler have been reunited.

Grampa came over on Friday afternoon and Tyler was absolutely thrilled. The first order of business was Tyler telling grampa where he had to sit and which story book he had to read.

Tyler proceeded to pinch grampas arm, pull his hair and pop him in the nose. These are common games for the two Bell boys to play while visiting with each other.

You can see that Tyler's progress is continuing and his smile tells everyone how happy he is to have his grampa back.

Tyler has been weaned down to three liters of O2 during the daytime. The BiPap machine is still hooked up at nighttime from about 9pm to 6am.

Tyler is doing well.

Tyler Speaks!

For more than four months Tyler hasn't been able to speak because of the larger sized trach tube that was placed in his neck during his first hospitalization in April.

Craig and I took Tyler to to see the pulmonary doctor this past Monday for his second follow-up visit since his last hospitalization.

"Tyler - you are doing remarkably well. You're probably four to five months ahead of where I thought you'd be right now."

Those were the words his doctor said to him when he was through with the examination.

So - Tyler got to have a different kind of trach tube put in. The first trach had a 'cuff' on it. The cuff would be inflated with a small tube and syringe whenever he was placed on the ventilator. The cuff would be inflated to the size of the inside of his trach which wouldn't allow any of the pressure support to be released through his nose.

The new trach that was places is 'cuffless' which now allows a small amount of air to pass through his trach and over his vocal cords. And -- voila! Tyler speaks!

This may not seem like much of an accomplishment but it really is.

What it means is that the air being exchanged in Tyler's lungs is doing so at a rate that allows some air to escape.

His lungs are improving and his attitude improved 100% when he got to speak again.

The voice he has now is a little bit hoarse and crackly and a little bit scratchy. He surprised himself when the speaking valve was but back onto his trach.

In the video you can hear him say 'mom' 'hi' and 'e' -- the 'e' sound is for the name 'Petey' which is the name of a little puppy in his favorite story book.

Now he is yelling, screaming in the hallway and pulling his own hair trying to get us to laugh at him.

He's about 80% back to where he was before his long illness.

The work ahead of us is physical therapy to help him regain the use of his legs for crawling and pulling himself up into and out of bed.

improvements every day...

Well -- this week Tyler has decided that enough is enough.

One day he sat up, crawled into the hallway and started yelling to play with his favorite ball.

His strength is returning to his body and his naughty personality has himself getting into trouble again.

The kitties -- Allie and Bernie -- thought they were safe but he's after them again.