Thursday, October 28, 2010


Here's Lewis getting casted for his AFOs. He should have them in a couple weeks.

Lewis will also be having an MRI done in a couple weeks. Right now his ventricles are very very small so they'd like to raise the setting on his shunt again but they have to make sure there is room between the brain and the skull. They'll also be checking his brain and spinal cord for anything that could be causing his stridor. They'll have to sedate him for the procedure and sedation with a stridor isn't ideal so please keep Lewis in your prayers. We'll put a picture of him up with his tiny little AFOs on as soon as he gets them! 

Saturday, October 23, 2010

Peanut Therapy

We spend a lot of time every day doing physical therapy with Lewis. He tolerates it really well because to him, we're just playing. Here's one of his favorite exercises. His physical therapist left this peanut ball with us so that we can use it when we're working with him. He lays back on it to stretch out his hip flexors and he stands up on it like this to bear some weight on his legs. Today he started sliding back on the ball so that he was in a sitting/crouching position then straightened his legs back up to a standing position. Pretty exciting! He's got some good movement and strength in those legs but not much sensation so it's a challenge to get him to use his muscles. It's so much fun, though! :)

Friday, October 22, 2010

Lewis Laughing

I love to hear this little guy laugh! He's laughing at me throwing a rope and playing with Gauge... in case you were wondering.

Sunday, October 17, 2010

Belly Surfing

Lewis has recently started rolling over and I am on a mission to get him rolling over on video. Of course he won't do it while I'm recording... and now that he can roll over it's not so exciting anymore and he'd rather try to do new things. Here is one of those things that is apparently way more fun than rolling over... I call it belly-surfing. :)

P.S. A couple good new Dr. appts! Lewis's hips both look good! His bladder and kidneys look good and during the ultrasound his bladder was empty- which is great! Praise God, keep those good appointments coming!

Saturday, October 2, 2010

Crazy Month

Whew! September was one crazy month! I could go on for days about all the appointments we had, but I'll give you the cliff-notes version.

Lewis's shunt adjustments are going smoothly. LOTS of trips to the office for them to check on everything but that should slow down again soon.

He thought everything looked good but wanted to do a hip ultrasound to make sure. Lewis's right hip is ok but the angle between his the pelvic bone and his left femur is around 58 degrees (it should be above 60). We haven't heard from orthopedics yet as to what they'll do.
Lewis's teacher at the CLC is recommending an AFO for his right foot. It is turned in and up a little bit. We've been working on it with stretching since he was born and it has definitely improved but it would be nice to get it straightened out before he can reach down and rip the brace off!
Lewis's physical therapist is recommending a nighttime knee extender since his legs are bent a couple degrees when extended. Straight knees are really important when it comes to walking so this is another thing we would like to take care of right away.
We have an assessment set up with orthotics next week to see what they think. Hopefully orthopedics will agree and write a prescription fort the necessary equipment without needing too much convincing...
I think it's hard to see your baby with plastic and bracing on. I can understand that. But I am so thankful that this is available to Lewis. My goal is to give Lewis every opportunity to reach his full potential and this is just another time when I have to get over my picture of what I thought my life was going to be like and embrace this life. Lewis has so many great resources available to him. Things that would keep kids from ever walking can now be corrected with a few months of braces or casting. It's amazing!!!

Oh my goodness. I don't even know what to say. I had my first experience with a doctor that I DO NOT get along with. Luckily he's not someone very important in Lewis's care. I'll tell you a few of the things he said, and you can draw your own conclusions about him:

To Lewis: "Well you're a real downer."

"Lewis's IQ will be 5 points lower than you and your husband. Here's the bell curve. You know what standard deviation is, right?"

"People with SB take about 3 years longer than average to be independent. So your husband can't turn Lewis's room into a man-cave when Lewis turns 18; he'll have to wait until he's 21."

"Doesn't he have a bottle or something?"

I could go on and on forever, but I think you get the idea. I had a really fun time filling out my satisfaction survey that came in the mail!

Therapy has been going great. Physical therapy comes to our house once a week and we go to the CLC once a week as well. I like to see the two different approaches and it's been really educational for me. I feel overwhelmed each time I go but when I try it all out at home I can combine everything into something that works well for us.

For some reason he always puts that fist in the air when he's stretching on the peanut... haha!
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