So two things came out of our appointment with Dr. Tiller today. The first is that he believes Caitlin is still doing well - her Kyphosis appears to be receding, her muscle tone looks good, and her height (25.5 inches) and weight (18lbs 6oz) are very appropriate for her age. The second is that he is VERY resistant to our requests for baseline testing that according to the "Health Supervision for Children with Achondroplasia" should be done as soon after birth as possible. We did manage to squeeze a referral to an Ortho specialist so she can get PT and to an ENT who will evaluate her breathing, but no more as of yet.
We are so frustrated right now that it'll take much longer to write the complete blog about it. Suffice it to say that I've got another reason to make the new job work - different insurance coverage. CalArts offers coverage through Blue Cross, and as I just qualified for benefits last week I've signed up for employee + one dependant coverage in Caitlin's name. Cedars Sinai is on the providers list for Blue Cross, and I'm hoping that they'll be less reluctant to refer to themselves.
Well, I'm off to a late night gig. Post more later!
4 comments:
Mike, check your blue cross coverage - I don't have to have referrals for anything with the PPO that I have. Its terrible that you can't get the care that Caitlin needs! If the geneticist won't refer, have your pediatrician - they are normally very willing to get you the referrals - especially if you already have the doctors name and phone number ready! The pediatrician can also order baseline tests as well!
Mike-Caitlin sounds like she is doing great! I know insurance is the most annoying thing in the world. After seeing Dr. Ain, he reassured me that Preston did not need a sleep study or neuro visit. Although he was an ortho-he is also an achon. Preston I think had a CT scan in the hospital at birth.
ENT would be a great thing-just to make sure everything looks good there!
Hi Mike,
I finally found your blog via Tonya's. I enjoy reading all of your comments and your blog is great! And, of course, your kids are adorable!
Go with your gut and keep fighting until you get what you think is right. Doctor's are great but they are not always right.
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