19 September 2009

Miracles and Money

I have been hesitant to talk about the following blog post for numerous reasons.

Here in the blog world, we can post about our triumphs and heartaches, hopes and dreams, and struggles and desires. I try to be honest and forthcoming about the path we have been going down. And all the world gets to see it (well, the 22 who I have following us). Having people here, following along with my journey, Liam's journey, has been comforting and encouraging. Knowing that there are people out there who love us and pray for us can make all the difference in the world when we are having a down day. Or a down week. Or a down month. The words of encouragement I have received have literally turned my days around.

But opening ourselves up to the blogging world also brings in an undesirable aspect. I have seen it happen first hand, not to me, but to others whose blogs I have followed. Motives, intentions, and attitudes can be misinterpreted or even worse, subjected to scrutiny by people who may not know the full extent of the situation. While criticism can be helpful, giving you an opportunity to check yourself, it can also be hurtful and harmful.

Why am I talking about all this? Well, I'm glad you asked!

You see, we have been given a child that has special needs. Liam is amazing and while we love him unconditionally, we want to do everything we can to ensure he has what he needs to someday live a life that is independent, happy and healthy. He means too much to our family (those who are related by blood and those who are related by love) to not try to help him in any way possible.

The cost of raising one child born in 2007 (the year Liam was born) is approximately $340,000. That is a lot of money in itself. But what about a special needs child? A new report was just issued showing that the cost of raising a child with special needs is just a few dollars shy of $1,000,000. That's right. One million dollars.

What people with healthy children might not know is that insurance doesn't cover everything. In fact, our federal gov't insurance doesn't cover much at all.

For example, Liam gets physical therapy twice a week, occupational therapy twice a week, and a vision teacher twice a month. Just counting PT and OT, that comes out to 240 visits on average per year. Do you have any idea what my insurance pays for? They pay for a whopping 50 visits a year. That's it. 50. Luckily, we get early intervention services for Liam and I requested they not bill my insurance for it and that allows us to keep our measly 50 visits for outside help. I use these up weekly for Liam's additional OT. Once we have used them up, everything comes out of pocket. Therapy visits are well over a hundred dollars each. And we haven't even started him on his speech therapies yet! Let alone the additional CST we would like to be doing.

Liam has a special needs nutritionist that costs $100 just to talk to her for 30 minutes. There are doctor co-pays, medicines and tests, all with large co-pays.

Liam will need durable medical equipment (DME) that insurance only pays 80% of. While you might be thinking that is a great thing, and it is better than it could be, it still means that when we go to buy anything for Liam that is classified as DME, we will be spending several hundred dollars. A bath chair alone costs four to five hundred dollars. A bath chair! Let alone special adapted strollers, wheelchairs and seats that go into the thousands of dollars.

And then there is the therapies and treatments for Liam that has shown to be helpful for guys like him that insurance doesn't cover at all. Nothing. Not one dime. And unfortunately, I have not been able to get any help from the state of NC. Trust me when I say this. I have tried to no avail. I get turned away everywhere I go because we don't qualify for assistance.

Which brings me to the whole point of this post.

We have been told by several people including the nutritionist, therapists and fellow CP parents, that hyperbaric oxygen treatments (HBOT) can be very effective for CP. After doing a lot of research, Shawn and I have come to the conclusion that it definitely could be a very effective treatment for Liam. And we will never know unless we try it. The drawback? Well, HBOT is done as a set of 'dives'. It usually takes 30-40 dives before you notice any changes and each dive costs well over $100 each. If you are doing the math, that's over $4000 for a round of dives, let alone hotel, food and traveling expenses. Plus, we need to do at least two rounds of dives about 4-6 months apart plus additional dives at a relatively local place in the interim. We just don't have that kind of cash laying around here to be able to try these treatments for Liam.

So, I started doing a bunch more research trying to figure out how to go about doing these dives and not maxing out our only credit card. And that was hard pressed to do. These treatments are just so pricey. But, I did find a place! Grandparents of a boy born with CP were told to try HBOT for him and they saw wonderful results. So much so, that they made it their life mission to provide HBOT to parents at a very reduced cost. How much you ask? Well, they only charge you $2500 for a round of 40 dives. AND, they provide you with free housing, use of a quadricisor, and oxy-sound harmonics. It's an incredible deal.

After thinking and praying about it, we have decided to do it.

What was uncanny was that two different women I spoke with from two very different walks of life used the same reference for trying HBOT. They both said, "Chemotherapy doesn't work for everyone. But no one is telling cancer patients that they shouldn't try it." It was strange to hear these women make the same reference. It felt like a sign.

I have reserved a place for Liam in November and will be away from the rest of my family for over 3 weeks while he dives twice a day, every day, excluding Sundays.

Now here's where the 'opening yourself up to the world through the blog' comes in to play.

We are doing some fund raising for Lemmy! Just some small stuff. Miracle Mountain (the place where the dives will take place) actually helps provide you with the ability to raise money through lottery style tickets. You can have your friends and family scratch off a ticket and whatever is underneath is the amount you donate. What is great about it is that the largest amount is $3. That's it. There is no pressure. So it is very low key, not embarrassing to us or the donator and each card has the potential to bring in $100 (there are numerous circles to scratch off). As soon as I get some, I will post what they look like and if anyone is interested in helping us out with them, please let me know and I will get one to you.

In the meantime, if anyone is interested in helping Liam out, I have put a link in the top corner of the blog. I want to be able to keep track of the money that has been brought in for his treatments so you can all see when we have reached our goal. Any amount is welcome and appreciated more than saying these words in this blog could convey.

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Only the Sheppards said...

Hoping and praying for good results and effective therapy!

*super dude and super dog* said...

I can't remember if I've told you this before, but one of the families we lived with at Duke have a family member who did the hyperbaric (sp?) therapy. The family we lived with are the Ashworths (http://davisatduke.blogspot.com/) and their family member's blog is http://brycenashworth.blogspot.com/2008/10/update-on-fundraising-brycens.html

They are very nice and may be able to help you with fundraising ideas.

Please let us know how we can help. We will definately keep Liam in our prayers!

blair said...

Hi... Long story about how I ended up on your blog, so I won't try to explain. I just read your post about raising funds for your son's treatment. I know you stated that you have tried to receive assistance from your state, but I thought I would ask anyway-Have you applied for Medicaid for the disabled child? I am an occupational therapist, and that's what nearly all of my children have. From what I understand, your income status doesn't matter. I do live in Mississippi, though, so that might change things. Just a thought! I will keep all of you in my prayers.

Simon Conley said...

Thanks ffor posting this