2011 - quite a year!

2011 has been a big year. 

Sleep
Tom is now sleeping in his bed alone all night. Since I've been off for the holidays we thought it would be a good time to work on Tom's sleeping. He had been sleeping in our bed most of the night and no one was sleeping well. We tried different sleep training methods at different times but we were never successful. Tom has endurance and lung power like you wouldn't believe and he used to cry until he threw up. (No sleep advice book ever covered that!)

Christmas overload - catching a nap after presents

A couple weeks ago we tried Melatonin. It is a hormone naturally produced by the body to signal it's time for sleep and you can buy it at CVS over the counter. The cycles of light and darkness (days and nights) are what tells the body to produce Melatonin.

Blindness can really interfere with your sleep cycle. Tom's body never got the message that it was time to slow down and he would just go go go!  (Read more about Melatonin here.) I used to laugh when people saw him in action during the day and said, "Oh, he will sleep good tonight." Ha! It never happened. Melatonin won't keep you asleep; it just helps you fall asleep. But at least we can start getting Tom to sleep at a reasonable hour instead of midnight or later.

We have been just putting Tom into his bed when he is tired and then reassuring him periodically until he falls asleep. The first night was awful and I was in his room almost all night. But every night has been better! I think he knows now that he has to sleep in his own bed. He is sleeping better and waking up less at night. I am very encouraged by our progress.

He is eating purees - just mouthing solids

Eating
He is eating by mouth once a day and happily using his improved oral motor skills. He's not consuming enough to cut back on his tube feeds but we do have a starting point and we can build on that. It is so nice to see him enjoying foods!

This progress would not be possible without the patient guidance and therapy Tom receives at the Children's Institute of Pittsburgh. They are so patient and kind. Now that Tom has bonded with his therapists he is more focused and willing to participate. Trust is so important in therapy. It's not a bad idea to just let your child spend some time playing with their new therapists for a session before trying to do any real therapy.

Pre-Braille and O&M
We have vision therapy twice a week and are working really hard on pre-braille skills. Finger strengthening, finger isolation, shape recognition and following along on braille books are are main activities. Tom has a cane but doesn't really use it yet. He can get around our house quite well without a cane and seems to be able to find doorways with ease. It's the toys on the floor or unexpected object that trips him up. Our O&M doesn't think Tom is ready for a cane but I think it would be a big help to him. I just don't really know where to start. I signed Tom up for the NFB's Early Explorers program recently. This free program aims to introduce children to the long white cane at a very early age to build their skills and confidence. I can't wait to get the newsletter and DVD that will guide me in teaching Tom some cane skills.

Braille "Tommy" tag on a Christmas gift

This work Tom does with his Occupational Therapist also contributes to his braille readiness. Along with basic skills like putting on shoes, they do sensory play and balance work to strengthen Tom's core and sense of balance.

Physical 
Tom is walking, dancing, climbing stairs and jumping. He spent a long time working on taking steps but once he got it all the other skills quickly followed. Tom has always loved movement and physical play. His new skills bring him so much happiness! He can play games like ring around the rosy and dance around the house to his favorite music. OMG does Tom like music! He loves to play his dad's real electric guitars and jam on his keyboard.

Singing with Dad

He has excellent trailing skills and can get around the house and go anywhere he wants. I will never forget how awesome it was when I was in the kitchen a couple months ago and he came walking in the kitchen, all nonchalant, just to see what was going on. His world has gotten so much bigger now!

Dance!

Dance!

Dance!

Medical
Things are quiet medically. I would have never imagined that statement when Tom was 6 months old or even 12 months old. Right now, Tom's retinas are stable and his glaucoma is under control. He is growing and learning. We are very very lucky!

So that's where we are now. Can't wait to see what happens in 2012!