Hi Morgan!

I'm Sam from just down the hall at the Icthyosis conference. I wish (as I'm sure you do!) that you guys hadn't gotten sick so we could have spent more time together!

I'm so sorry that you're going through all of this right now. How hard to get all three diagnoses at once, even if you did expect the apraxia one.

I, too, understand the insurance issues. Cate needed PT and OT last year and we used all of our therapy benefits - get this, for her LIFETIME - up in 60 days! Regardless, while she wasn't diagnosed with sensory issues, the therapists do believe that the reason she was so delayed in rolling (delayed by about 10 months) crawling (never crawled) and walking (delayed by about 5 months) was due to the pain and thick skin on her extremities. So, I'm with you in wondering if it really is sensory issues, or really just due to his skin. I think you have a perfectly fair reason to raise it as a question to the therapist, even if she is quite prominent.

Like Jennifer, I was going to suggest going through your school system to try and get additional therapy. The Babies Can't Wait program works with children through age 3 and then our school system evaluates and begins offering therapy, as needed, from age 3 on. We plan on getting Cate tested with the school system in the November or December so that when she turns 3 in January, she'll be able to start right away.

I hope you're able to find some answers and peace with all of this. Trust that mommy gut - 9 times out of 10 it's right!!

{BTW - Thanks to you, we're moving forward with taking Cate to YDA! We are waiting to get our first appointment with Dr. Choate now!)
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Sam
Mama to Cate (1/30/08), our little monkey.
Collodian Baby/Lamellar Ichthyosis