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!


  1. Thanks for your note of encouragement Lauren. I often think of you and your NICU experience as you wrote about it here to keep me going when it seems like things are taking longer than we expected for healing and discharge. It is interesting to hear your opinion of CLC as we begin to decide about that ourselves. And I really hope we don't have Dr. Evil when we head to the clinic - GAH!! Hopefully after your survey he is fired!

  2. Love the update!! I'm not sure how, but he is just getting cuter and cuter!! Grey had his first set of AFOs when he was around 3 months and I thought that it was going to be really hard seeing him in them, but seriously...they were the cutest things EVER!! Baby AFOs are SO stinkin cute!!! Sorry your first meeting with you know who was terrible...we have the same feelings about that one. :( Hope to see you guys soon!!!

  3. Lauren and Coleman~
    We just love reading your updates. One day you should turn these entries into a book to help others. You are great parents doing everything so right. Lewis is one lucky boy!! Remember we are waiting patiently for your family trip to the Big Apple via New Jersey.
    With love, Mr & Mrs Reilly

  4. Oh man, what a cute little guy! I can't wait til I get to meet and hold Lewis! Sorry to hear about the cranky doctor :( He obviously doesn't realize how awesome you and Lewis are. We're praying for ya!

  5. I can see why you didn't like that doctor...I don't know how you held it together with him... Great pix of Lewis! Thanks for the updates!


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