It seemed appropriate to use a variant of the title of the classic sci-fi film 2010 for the first post of the year. We hope that 2010 will be the year we see some real changes in Aidan and we "break through" the damage caused by his accident.
2009 was actually a good year for Aidan. Though a lot of people didn't completely realize or understand it, he really made a lot of progress. Even though he still does not speak, he does communicate. We all (family, nurses, teachers) have an easy time telling when he is happy, sad, or in pain. It's hard to say, but it seems we have settled a bit into the routine.
For 2010, we have quite a few things that we hope will happen:
Of course, all those things require money. As we have mentioned in the past, Stem Cell Therapy will cost at least $50,000 when you calculate all the costs involved (airfare, visas, passports, etc.). A new van with all the necessary modifications and options will cost almost as much, if not more. HBOT runs between $75 and $150 per session, depending on the location; for 40 sessions, that runs up to $6000. I'm not sure how much is involved for G-Therapy at this time; all I know is that the doctor providing it usually gives patients the first six months free of charge (UPDATE: I just received an email that indicated a 6-month supply normally runs $2000, but the doctor will not turn anyone away that is unable to pay for the treatment. I still believe the first 6 months are given for free --rw). That means I would only need to pay the "courier fee" and whatever is required to obtain and send the required medical documentation to the courier.
Fortunately, there are wonderful people out there like you all reading this what have been more than willing and able to help. For example, Aidan's preschool, with the assistance of The ARC of Cabarrus County, are doing an Applebee's "Flapjack Fundraiser". The funds from this event will help us get a new wheelchair base that will allow Aidan to take the bus to school. Right now, we have what's called a "high-low" base. It's great for taking him places because it behaves like a stroller, but it cannot be locked in place (e.g., inside a bus or conversion van). Unfortunately, insurance only allows you a new wheelchair or base every few years. Thanks to Blogger's email feature, I was able to forward the email as a blog post. See the post dated January 11 for all the details.
Also on the donation front, there are some new options available. I put up a new ChipIn widget last night for those who have used it in the past; however, I was finally able to work out a tax-deductible option for those who would be interested.
The National Transplant Assistance Fund & Catastrophic Injury Program (NTAF) is a nationwide organization "that provides expert fundraising guidance to patients, families and communities nationwide, while offering fiscal accountability for funds raised [...] In 26 years, NTAF has helped patients, families and communities nationwide raise $64 million to pay for out-of-pocket expenses related to transplantation and catastrophic injury." They do this by setting up accounts "In Honor Of" the patient. Funds from events or individual donations can then be sent to them and they are then used to cover costs for treatments and other expenses not covered by insurance. I have already added this information below the ChipIn box on under the section labeled "FUNDRAISING TO HELP PAY FOR THERAPIES". Once we have our first confirmed donation received, the organization will setup a page on their website that will allow for online donations. Once I have that information, I will post the link here on the blog.
I want to thank everyone out there who has read the blog, followed us on Twitter and Facebook, or just been there for us in general. The second anniversary of Aidan's accident is fast approaching, as is the birth of our third child. I truly believe all of your prayers and support have helped us make it through all of this and maintain some semblance of sanity among all the ensuing chaos. We pray that all of you will have a happy, successful, and prosperous 2010.
~Russell
2009 was actually a good year for Aidan. Though a lot of people didn't completely realize or understand it, he really made a lot of progress. Even though he still does not speak, he does communicate. We all (family, nurses, teachers) have an easy time telling when he is happy, sad, or in pain. It's hard to say, but it seems we have settled a bit into the routine.
For 2010, we have quite a few things that we hope will happen:
- We still want to take Aidan to China for Stem Cell Therapy, and believe it will happen this year
- We are considering G-Therapy from India. We are researching it now, while I am getting the necessary medical records and videos together. I found out there is a dad in Texas who is going to India soon and offered to courier for families. Since we can't really do two big international trips in one year, this was a welcome option to consider.
- We would like to start Aidan on HBOT again. Lesson learned from the last center: get everything documented, including when they give the OK for something.
- There are other therapies we'd like to consider as well, including Craniosacral Therapy, Chiropractic, Acupuncture, etc.
- We have talked about getting a different vehicle for transporting Aidan. Even though we can transport him easily now, it won't be long before he gets too heavy to lift/carry and we'll have to transport him with him solely in his wheelchair.
Of course, all those things require money. As we have mentioned in the past, Stem Cell Therapy will cost at least $50,000 when you calculate all the costs involved (airfare, visas, passports, etc.). A new van with all the necessary modifications and options will cost almost as much, if not more. HBOT runs between $75 and $150 per session, depending on the location; for 40 sessions, that runs up to $6000. I'm not sure how much is involved for G-Therapy at this time; all I know is that the doctor providing it usually gives patients the first six months free of charge (UPDATE: I just received an email that indicated a 6-month supply normally runs $2000, but the doctor will not turn anyone away that is unable to pay for the treatment. I still believe the first 6 months are given for free --rw). That means I would only need to pay the "courier fee" and whatever is required to obtain and send the required medical documentation to the courier.
Fortunately, there are wonderful people out there like you all reading this what have been more than willing and able to help. For example, Aidan's preschool, with the assistance of The ARC of Cabarrus County, are doing an Applebee's "Flapjack Fundraiser". The funds from this event will help us get a new wheelchair base that will allow Aidan to take the bus to school. Right now, we have what's called a "high-low" base. It's great for taking him places because it behaves like a stroller, but it cannot be locked in place (e.g., inside a bus or conversion van). Unfortunately, insurance only allows you a new wheelchair or base every few years. Thanks to Blogger's email feature, I was able to forward the email as a blog post. See the post dated January 11 for all the details.
I have also been recently notified by a fellow Oklahoma State alum that he wanted to help us out by doing a fundraiser. He told me he is planning something that will take place here in Charlotte. All I know is that he has experience in booking/organizing special fundraising events. I also have heard from someone else who is planning another event. All I know about that is that he is in the process of finding someone to make a donation to fund/underwrite the event. In both cases, I will post more information as it becomes available. (UPDATE: I am also considering organizing some fundraisers myself. I have been in contact with a couple of other area businesses that do special "fundraiser nights" much like what Applebee's is doing.)
Also on the donation front, there are some new options available. I put up a new ChipIn widget last night for those who have used it in the past; however, I was finally able to work out a tax-deductible option for those who would be interested.
The National Transplant Assistance Fund & Catastrophic Injury Program (NTAF) is a nationwide organization "that provides expert fundraising guidance to patients, families and communities nationwide, while offering fiscal accountability for funds raised [...] In 26 years, NTAF has helped patients, families and communities nationwide raise $64 million to pay for out-of-pocket expenses related to transplantation and catastrophic injury." They do this by setting up accounts "In Honor Of" the patient. Funds from events or individual donations can then be sent to them and they are then used to cover costs for treatments and other expenses not covered by insurance. I have already added this information below the ChipIn box on under the section labeled "FUNDRAISING TO HELP PAY FOR THERAPIES". Once we have our first confirmed donation received, the organization will setup a page on their website that will allow for online donations. Once I have that information, I will post the link here on the blog.
I want to thank everyone out there who has read the blog, followed us on Twitter and Facebook, or just been there for us in general. The second anniversary of Aidan's accident is fast approaching, as is the birth of our third child. I truly believe all of your prayers and support have helped us make it through all of this and maintain some semblance of sanity among all the ensuing chaos. We pray that all of you will have a happy, successful, and prosperous 2010.
~Russell
3 comments:
It's amazing that there are so many promising options to help Aidan. He is so blessed to have parents like you and Erin who will do whatever it takes to help him get better.
How is Baby Girl doing?
"Baby girl" is doing well. Looks like we are on pace for an end of March delivery.
God Bless both of you ; Aidan is blessed to have you both. BTW, the artwork I got from the raffle was AMAZING! Oh and also, Erin, let's talk about me doing a fundraiser for you on my blog when I get back from TLC, ok? Do NOT let me forget!!
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