November 1998

November 19th: First, I need to tell you that I only have good news to tell about our little man!! He has continued to improve each and every day. The speech, occupational and physical therapists he sees every week are VERY excited about his progress. That has been one of the most important things for us to hear. Their professional opinions carry a lot of weight.

For us, the most important event in the last month was his smile. Tyler has returned to the happy little guy he used to be... He smiles at everyone again! He flirts with people in the supermarket, and gives you the greatest smile when you come home from work. This, we can live with!! If nothing else, his smile has been so great for us to see again. He has discovered playing again. He can hold and manipulate toys (mostly only to chew on them, and still only with his right hand). By the way, this also means his vision has returned (another rather great milestone). He is able to track objects fully, and there just seems to be a lot more behind his eyes. He will also smile at you in the morning when he sees you peer over his crib.

Did I say 'morning', I meant at odd hours of the night AND the morning. He still will wake up at 2:30 for us about every third night. At least we can count on a good night sleep every few nights. He will take about three hours of naps each day as well. We're almost feeling like regular people again.

Tyler's heart function is great, we saw the Cardiologist last night. He was happy to see the strength of Tyler's blood flow. We did finally ask if we could call Dr. Cocalis by his first name, he laughed at us. We know him so well by now. I'll probably start referring to him as Mark from now on. Anyway, Mark said we could stop the minimal fat diet for Tyler. Tyler is growing, but looks a little skinny. Donna and I do not, but Tyler does ;-) This is not a problem, just something moms get a little worried about.

Clinical update: Tyler is not able to sit on his own yet. It looks as if his trunk is strong enough to support him, but he is not interested. He can sit up for about 15 seconds if he has something in his hand to distract him. His head control is great, as well as his hearing. He will turn his head to look at you if he hears you! He can support his weight on his legs if you hold his hands up. This was something the PT (physical therapy) people were working on. Tyler has five therapy sessions each week, as well as the occasional Pediatrician and Cardiologist appointments. He seems to understand two words right now, 'kiss' and 'up.' He has started his kissing ways again!!! He will also raise his right hand fully (and his left hand mostly) if you say 'up.' He will almost say 'momma' and 'dada' when appropriate as well. It's a little stretch, but we think that is what is happening ;-)

He has become self feeding again as well. This is VERY handy as he takes almost 45 minutes to eat, even if we were to try to feed him. Mommy and I have different techniques for feeding, but both seem to work for him. She likes to sing to him and get the food down, daddy does the guy thing (hang out in the room with him, but not get in his face). I think the combo is the best.

We have recently applied for a few programs that are offered in San Diego. One program has a school teacher come to the house to help give Tyler a 'head start' for elementary school. The other is to allow Donna and I to attempt to live a normal life. They come out to the house and watch Tyler for a few hours each week to let you do whatever you want (except work). You are supposed to go 'out' and get away from primary care for a few hours a week. Both are designed for 'special needs' children. I'm not certain when these programs will start, but we are both very excited about them...

The goals in the next few weeks will be to have Tyler:

• Roll over on his own

• Sit on his own for a longer period of time

• Recognize more words

• Repeat words we say

• Finish memorizing the Declaration of Independence ;-)

He is really been a lot more fun lately. We're looking forward to each and every accomplishment...