October 1998

Sunday, October 4: It's almost impossible to believe he's been home for three weeks. This has perhaps been the most difficult time for us all to handle. Seeing Tyler at home unable to do the things he used to has been incredibly hard. For the first week or so, he had three distinct moods: 15% of the time he was "not unhappy" (or zombie like), 70% was unhappy (whining and fussy), and the final 15% was screaming and purple. He still has not given us a smile.

He has continued to progress though. Each day so far has given us a small but distinct improvement in his abilities. Last week he started making raspberry sounds with his mouth and tongue - something the speech therapist was very excited about.

Saturday, October 10: Wow, I was interrupted during that last update, and haven't been back for a week. It has been a eventful week though. Tyler continues to amaze his family and friends. Where can I start?

After the raspberry sounds, he continued to 'exercise' his mouth. He is 'saying' more and more each day. His most popular statement is 'Nanananananana.' This is a multi-purpose word. It could be used as a regular "I am ok" or the beginning of an unhappy stage. It's up to us to guess which... He also will sneak in a 'dadadada' or some sort of word that starts with a 'g' sound. I cannot quite figure out how to spell that one yet ;-)

He sleeps a little (ugh). He actually gets almost less sleep than we do. We are looking forward to a time when he returns to his old sleep patterns. He won't go to sleep until about 10:30 or 11:00 pm, then he wakes us up at 2:00 am for his quick turn. Since he is unable to turn himself, we need to do that for him. We put an egg crate mattress pad under him, that helped his sleep quite a lot. He will wake up about 6:00 am for us. We don't have to set our alarm any more ;-) It is amazing that he can tell time so well. Lately, after his 6:00 am wakeup, we bring him into bed with us. He usually will cuddle and fall back asleep for an hour or so. It's a nice time for us all.

In order to help us out, Grandpa came down from the mountains for a week to watch Tyler with us. What a great help that was. We were able to get caught up at work a little, as well as have an extra 'calm' adult at the house. Donna and I actually went out on a date as well!

His latest trick is one of the best we've seen. He has decided that chewing on things is very calming (and fun). We will put one of his chew toys in his right hand, then he immediately puts it up in his mouth. This is the first purposeful and repeatable action he has done. We were very excited about that. His left arm is showing more signs of activity as well.

More clinically now: He cannot sit up, but he has regained almost full head control. He will not bear weight on his legs, but he will kick them (almost continuously ;-). We haven't tried a bath yet, but he likes to shower with daddy. Being outside is still a favorite place for him. He eats very well still, but will not take a bottle. For a while, we had to fight with his sipper cup, but that has stopped. He doesn't like juice, or any clear liquids, but he will take chocolate milk (won't we all). We have started using cow's milk and haven't seen any bad effects. We have 6 or 7 therapy sessions each week (physical, occupational, and speech). He is still on a minimal fat diet. He is gaining weight - and still has his red hair!

The theory of us bringing home a 22 pound infant is holding. Each of the milestones we have seen during the past few weeks are things we watched him do before. He is doing them more quickly this time thought. As long as this continues, we will carry the hope that his recovery will be complete!

Thank you all for your continued support and prayers.