Camden Update

We had a great appt. on Tuesday with a Nurse Practitioner at Nemours. She was referred by the Nuerologist (that we didn't care for...the one who never gave us any answers and wouldn't even diagnose him for us). We love the NP! She was very thorough in explaining to us why Camden may do the things he does and answered so many of our questions. Her biggest concern is that we add an Orthopedic surgeon to the mix so that they can evaluate Camden's hip growth. As you know, all parts of his legs turn inwards and her worry is that his hip bones may not form in the normal way. In children without disabilities, the bone connected to the femur is perpendicular to it. As they grow and develop and spend more time on their legs (the right way), that bone begins to curve around the top of the femur and hug it.
The Ortho dr. will most likely look into that bone to see what shape it's in and surgery may be something in Camden's future to correct it, if it's not being molded in the right way. We are also going to get linked up with a geneticist to investigate the cause of Camden's CP and see if there are any patterns we may need to know about when we're ready to add the 2nd child. She also referred us to a Developmental Pediatrician, one who specializes in kids w/ developmental delays. So, counting the Nurse Practitioner and the other 3, Team Camden is getting bigger and better! And we will be even busier than we are now. (Didn't think it was possible!)

The Baileys Get Political

Normally we don't like to get too political. But this year's election is so important. If you are curious about who we're voting for, and why, take a minute to read this, written by Kevin:

If you are a little unsure or on the fence then would you please consider taking a look at each candidates proposal for citizens with disabilities?
http://www.olrs.ohio.gov/prescompare.htm
http://www.barackobama.com/pdf/DisabilityPlanFactSheet.pdf
http://www.johnmccain.com/Informing/Issues/

Obama has proposed 10 billion a year to early intervention and developmental programs for children ages 0-5. This would mean that Camden could get services through early steps for an additional two years. Right now he can only receive funding from Early steps until he is 3. After this he must be enrolled in the public school system to receive therapy which means no therapy over the summer. McCain says that he will focus federal resources on ensuring that the neediest children have access to a range of high quality programs. He is not specific with age or money allocated.

You guys may also not know that there is a 7 year waiting list for Camden to receive financial assistance through Medicaid waivers. We also found out yesterday that my insurance will not cover a feeding chair or specialized car seat for Camden due to it being a developmental issue rather than a medical neccessity. This bothers me because the neurologist was worried about the way camden's legs are scissoring and possibly stumping the growth of his hip bones. She said that this may require surgery to correct later on. I believe Obama is in favor of more money spent on preventative medicine, which means it would be cheaper for Camden to have the correct equipment now rather than that money going toward surgery later.

Obama supports the Community Choice Act which allows americans with signifigant disabilites the choice of living in their community and receiving services rather than having to live in a nursing home or group home in order to receive federal services. McCain voted against this, and may have a very good reason but hopefully this will never be an issue with Camden.

I know this is just one issue, but it is a big one for Camden and Becky and I. If you find similar information about McCain then please let us know. I know that McCain is a big supporter on veteran care but he did not return the candidate questionnaire submitted by the American Association of People with Disabillities so it is hard to compare their answers.