Year Long Fundraiser for JSF

I would like to introduce the new fundraising campaign for the Joubert Syndrome Foundation called the 10 by 10 Campaign. The idea behind the campaign is to ask 10 people to ask 10 other people to donate $10 for Joubert Syndrome. It is a year long campaign which kicked off this October 10th and will end next October 10 (get it???? 10/10/10)

Joubert Sydrome is a really hard thing to raise money for, especially in the current economic climate. Fundraising in general is hard to do, even for the more widely publicized diseases and conditions. Because Joubert Syndrome is so rare, the fundraising is truly a grass-roots effort mostly depending on families affecting by the disorder going out and raising money and awareness and often donating money themselves. We end up asking the same people over and over again to donate therefore our base of support is not growing. One of the goals of this campaign is to help bring in second generation donors and broaden the network of fundraisers. My personal hope is that one day JS will have even half of the recognition that some of the other disorders do. Money raised for and by the Joubert Syndrome Foundation will help further research into the genetic causes of JS, possible treatments/cures, strengthen the network of support provided by the JSF to families and individuals affected by JS, raise awareness for JS to aid in earlier diagnosis and easier access to treatments and therapy, and the list goes on.

The easiest and quickest way you can help is to simply visit the 10 by 10 website and donate $10 in Haley's honor. Be sure to put in the "purpose" blank "10by10 campaign in honor of Haley Buchanan" so they can track where the donations came from. You can take it a step further and ask 10 (or more) of your friends to donate $10. I plan to host an event at some point in the coming year (most likely AFTER the holidays LOL) asking for a $10 donation from all that come. If you were so brave enough to host an event yourself that would be icing on the cake!!! Something as simple as a car wash, or spaghetti supper at church would be great! But I know any help/donation is a lot to ask in these hard times, and it is totally understandable if you are unable to help at the moment. We are just grateful for thoughts and prayers if that is all you can offer.

I'm hoping that this is making sense to everyone, because when it was first presented I myself was a little confused about the concept. There is no one big event that will take place on 10/10, WE are the event. 10/10/10 is just a way to help us remember to concept I suppose. This is a year long effort, so you will see me post about this periodically (and you will probably get sick of me talking about it) so hopefully this "squeaky wheel" will get some oil so to speak. Thanks for your help, and if you have any questions or want to help in any way please let me know.

Fun Outings

Haley had a couple of fun little outings last week. Last Thursday she had her first official "field trip" with her preschool to the pumpkin patch. It was really chilly that morning, but she seemed to have fun. We heard a story about "pollination", she wasn't too interested in that....wonder why? Then we went and played for a bit and picked out pumpkins before going on a hayride.

I really like cows.....wow, thats a big one!!

Lets go find a pumpkin Mommy

How do I choose, there are too many?!

Ok, I think I like this one!

Daddy and I on the hayride

She also got to go to the Kings Mountain Battlefield trail with Uncle Moo and PawPaw last weekend.

Not sure what PawPaw was trying to show me, but it must be interesting!

Cooper sure is funny



Gotta take time to pet the puppy



Finally made it to the monument, boy that was a long walk!



Me and Uncle Moo

Almost Crawling

Grandma got a short video clip with her phone of Haley tonight almost crawling. She is so close!!!!

OUTRAGE!!!!

I am sure some of you know what we have been going through with our insurance company lately. So I am sorry if I am repeating myself, I am posting this to prove a point and to say once again that our health insurance system is broken. I'm not getting into the politics of whether what the government is trying to do with health care is right or wrong. I'm simply saying, that as it stands now, we are being let down by the system.

Forgive me for being lengthy with this post, I'm hoping that this will help raise awareness and help someone else out in the future. I am also looking for any advice from those whom have either been through something similar or know how to work the system better than we do, or opinions on whether you think we really have a leg to stand on during this fight?

Our insurance company has been denying all claims for PT and OT since May stating that the diagnosis of developmental delay is not covered under our plan. So I gathered up all the documentation I could find proving that Haley's delay is most certainly due to a very specific cause, Joubert Syndrome. I very confidently put all my little documents in the mail last month, feeling like I had all my ducks in a row.....how could they deny us now, here they had the proof the needed!!!

Well, much to my dismay, I opened the big fat denial letter today. It was like a sucker punch in the gut. My pessimistic side told me not to get my hopes up, but deep down I thought for sure they would agree to pay....who was I kidding, health insurance companies are nothing but money grubbing evil empires. So now they are trying to slip through a different little loop hole. Blaming it on developmental delay didn't work, they are now going to try the"this is not an acute illness" approach. This is the letter I received (some parts have been removed to cut down on redundancy):

"In your appeal, you requested we reconsider and allow the PT and OT because you stated these services are medically necessary due to her Joubert Syndrome.

This review confirms the initial determination that the PT and OT is not eligible for reimbursement. Under the plan, benefits for ongoing therapy in this case are not covered. PT and OT are covered under the short term rehabilitation benefit which provides coverage for acute conditions when therapy is expected to result in significant improvement of the person's condition within 60 days from the date the therapy begins. In this case, the condition is an ongoing and not an acute condition.

The denial of coverage is based solely upon the reasons set forth above. No other basis for exclusions (e.g., medical necessity of the services or supply) that may be applicable to the circumstances was evaluated at this time. Therefore, we are upholding our previous determination.

Short-term rehabilitation is therapy, which is expected to result in improvement of a body function, which has been lost or impaired do to: an injury, a disease, or a congenital defect. Furnished to a person who is not confined as an inpatient in a hospital or other facility for medical care. This therapy shall be expected to result in significant improvement of the person's condition within 60 days from the date therapy begins."

I am confused by the fact that our plan will pay for unlimited therapies, with no lifetime maximum visits but yet they only consider payment for acute cases. Why would an acute illness need unlimited amounts of therapy......fishy, don't ya think? Also, why would they every pay for therapy from the start if they knew all along that she had a chronic condition? Furthermore, they paid for therapy for approximately 120 days before they began denying the claims....I thought they had some ridiculous 60 day rule????

It also befuddles me to see in writing that, according to their standards, Haley has not made "significant" progress!!!! This is a little girl who in January did not even have the grip strength to hold our hands to come to a sitting position, and today she is on the verge of walking. I am sorry, but that is VERY significant progress!!!! I take that as a personal insult to Haley to say she has not made significant progress.

So, our next course of action is to file an, albeit useless, second appeal, which will include documentation from our PT and OT proving Haley's SIGNIFICANT progress. All we can do is keep fighting and keep trying to prove our point. Haley will likely require some form of therapy for most of her childhood, so we are just in the beginning of therapy. Insurance companies rely on the assumption that most people will back down and not fight, they also are slimy bastards and will slip through any loophole that they can find or create. We will not go away quietly, I declare WAR!!!! Won't you join me???

Another First.........

They seem to be coming more and more frequently lately. I think something is really starting to click with Haley. She is enjoying her increased movement and freedom. Today when she woke up from her nap, Grandma found her in her bed sitting up. Up until now, Haley has been unable to transition from one position to another. If you sit her down, she sits, if you lay her down, she lays. She has never been able to go from one position to another. So, much to our surprise, she was found sitting up playing in her bed without anyone helping her do so. Grandma left her that way for a little while because she was happy playing by herself, but when she went back to get her.....there she lay on her belly and was happy. And when she went back again....well you guessed it she was sitting up again. So it seems like its not a fluke thing, she really has figured out that she can control her own positioning. I can't wait to see her do it with my own eyes!!!

Also, against the advice of our PT, we went ahead and bought her a "toy" walker because we have hit a snag with insurance getting her real walker ordered (imagine that!!!!), and the loaner walker is kinda old and the wheels don't work right. She seemed to enjoy the one my mom and dad for her, and I feel like it helps her get a grasp of how she can make herself move without the help of others.....even if it is on wheels. So here is a short video of her running across their living room chasing the chihuahuas (if you look closely, she has their leash in her hand, I think she wanted to capture them). This was taken with a cell phone, so the quality is very bad, but you get the idea.

FINALLY!!!! (OBX vacation part IV)

Some nice weather!!!!! Too bad Will and Papa had to leave today. We went and played putt-putt, Grandma tried to teach her how to play golf, but as you will see, she ended up playing like her daddy and just picking the ball up and putting the ball in the cup!!!

"OK, bend and the knees and follow thru"

"After 4 putting, I think it is time to give up"

"Isn't this what Daddy does?"

"Here, take this ball!"

Haley and Uncle Moo

Mama and I at one of the OBX painted horses

Rain, Rain Go Away (OBX vacation part III)

Well the weather system that was supposed to be moving out has moved back in, we were pretty much stuck inside all day long. We did get out and grab a pizza ride up through Corolla and Currituck. Not much of a sight seeing day :(

Daddy fixing my hair

Riding around in the crappy weather

Drinking out of my big girl cup