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Tuesday, January 12, 2010

Q&A

I have received a few emails with some questions about James SDR surgery as well as how are are setting up this fund. First let me say that our number one request is for your prayers and if you feel lead to donate to James' therapy cost, SDR surgery or other needs he may have we certainly welcome the help. You will notice that I am pretty much an open book. Josh and I are just a regular couple that wanted to have a family. We were given the BEST gift in the world and that is our James! He is a blessing and we thank God everyday for him.

Here are a few of the questions we have received, and a few that I thought might be coming!

Q. Why are you choosing the SDR and not medication to manage James tightness in his legs?
A. Josh and I have done a lot of research on both options. Yes there are medication options that can ease the tightness in James' legs and for some children with CP I am sure that option works well for their families. The medication, Baclofen or Botox, in my view is like closing the barn door after the horse has gotten out of the barn. You are constantly have to change the dosage and eventually a pump has to be surgically implanted into his spine because he will become resistant to the oral doses. Baclofen is also in the narcotic family of drugs. I have read several long term studies of adults that were given medications as children and how the risk of becoming dependant on the drug is very high. I feel that James came in to the world with what can be seen and a difficulty and I want to be very careful about how I help him into adulthood. So SDR surgery, for us, eliminates the need for the medication and also hopefully the need for future orthopedic surgery in the future because his bone will not be deformed since his muscle will no longer be pulling on the bones.

Q. Why are you choosing to Fly rather than drive to St. Louis?
A. We are planning on driving for all our pre-op appointments. We will choose to fly for the surgery date because on the return trip James will not be able to be in a sitting position for longer than 2 hours. Since we live longer than an 8 hour drive that means we will have to fly to St. Louis when surgery time comes. We will then resume driving to the required post-op appts. Air Fare is quite expensive and we will have to save hard for the one trip!

Q. Did you know that Shriner's Hospital does this surgery and the cost is covered?
A. Yes we do know about Shriner's hospital. We have researched using Shriner's and although I feel that they are a WONDERFUL organization and would be more than happy sending James to their facilities for treatment, we have chosen St. Louis. Here is why.... The SDR surgery has been around since the early 80's. Dr. TS park is considered THE world known Dr. for this surgery because he developed it. Other hospitals do the SDR, and they use a different method. The other methods cause a larger scar, longer hospitalization and more weakness post surgery. Dr. Parks new more refined method is much less invasive and more right for our family.

Q. If i donate, what does that cover and where does it go?
A. This is the hardest question for me because talking money is always difficult. So I am just going to be REALLY honest and blunt on this blog ( like I am in life) We have set up a separate savings account for James that is linked to the PayPal button on the right of this blog. All the money that is, has ,or will be donated goes straight to that fund. It will stay there until we have expenses that involved travel to St. Louis, equipment cost, co-pays, PT, OT and follow up appts. ALL donations are for James and his needs!!

Q. If James doesn't qualify for the surgery what happens to my donation.
A. Well just to be clear this fund is for expenses that relate to James' care. Right now the SDR surgery is our largest future expense because it involves so much more than just the one surgery. If by chance we are told that James will not qualify for the surgery ( although we have been told that will not be the case) then donations will be still be used for his care. Right now James is in therapy 3 days out of the week. Our insurance only covers 30 OT, PT and Speech visits combined in one year. We will use that up in the first 6 weeks of this year alone!!
I say that just as reality for us, and not to have a pity party. This is just life and we will continue to provide what James needs not matter what.


PLEASE Feel free to ask any question that you feel lead to ask. I know that everyone will understand that this is the Internet and although I am an open book about our life, I have to be careful to do what I can to protect my family. I will not be sharing personal financial statements, or will I provide any amounts others have felt lead to donate to us. We will share the names so that we can publicly Thank You, unless the person that donates asked to be un-named. I am just so honored that so many people have stepped up to offer prayers for our son.

We serve a Risen and wonderful God that can, if he chooses, heal our son at any moment. I pray for this to happen everyday on this side of heaven. Until that day I will work to the best of my ability to give James the best quality of life that we can. God has trusted us with this child and I pray that I will be the mother that Christ has called me to be. I don't promise to be perfect but I do promise to be honest and take you along with us on the journey.

2 comments:

CJAlabama

Thank you for being so honest and forthright in the information you are providing regarding fundraising for James. I know in my heart God will continue to bless James with his healing hand and he'll provide whatever means necessary to do his will. Including bringing openhearted donors to this site. James is a beautiful, smart, funny kid with such a loving spirit! I'm honored that he is my daughters boyfriend!!!!(as much as a 2 and 5yr can be boyfriend and girlfriend at this point :)

Holly

I'm glad you did this Q&A post! It was very informative!

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