Conference Call

It looks like we are going to the Cleveland Clinic on April 12th. We had a conference call with one of the main doctors on the research team, Dr. Kubu, and she gave us a good idea of what the process will entail. The screening process will take 3 days and then we will know if Jess is a candidate for the surgery. She felt he had a good chance of being accepted into the two year research study. I won't go into what will be involved until we know for sure he is accepted. We feel very fortunate that they are considering Jess and will, as always, do anything we can to help him recover. We are driving to Ohio in Jess' van and travel trailer. Thank goodness we got it fixed up to accommodate Jess last summer. It will be a long drive but it will be nice to have our home on wheels so we can have all the things necessary to take care of him. I will have a laptop to keep you updated on our trip.

Because we may end up being gone for an extended period of time, mom helped us make the decision for her to go to an assisted living home in her hometown of St. Anthony, ID. We moved her there on Tuesday. Thank you, Marlene for the use of your horse trailer and Mikey for helping Chris load it! It is a nice place and I think she will enjoy the people and the comfort of knowing she is not alone. Her sisters and brother-in-laws live close so they will keep an eye on her. It was very emotional to leave her and we miss her! She had a hard time saying good-bye to Jess. She has been around him since he was born. As Mikey reminded me, they both spent a lot of time at her house after school when they were growing up...eating cookies and whatever other goodies she had to share with them. It seems like yesterday....

The Screening Process

I got home from Minnesota on Thursday evening. I did have a wonderful trip and enjoyed holding that beautiful little grandson of mine. Joey and Angela are wonderful parents and are having fun with the new addition in their lives.

I had so much fun traveling with my granddaughter, Jahara. Her first airplane ride was memorable for both of us. She even got to sit in the captain's seat and look at all of the instruments.

They gave her a certificate and a pair of wings since it was her first flight. There is nothing like looking into a child's eyes and seeing the amazement of discovering the world.

My kids treated me like royalty and would not let me lift a finger unless it was to hold the baby. They both kept commenting on how hard it was for me to just relax. Relaxing has not been part of Chris or my reality in a long time.

Jamie got moved into her new place. She still has a lot of unpacking but I felt much better to see where it was and to know that they will be safe and comfortable. We are sure going to miss them.

Chris, mom, Brandie and Jess got along just fine while I was gone. Five days went pretty fast for all of us. I can't thank Brandie enough for helping Chris during my absence.

While I was in MN, I received a phone call from the Cleveland Clinic saying that they would like us to be there on the 24th of March. I calmly had a heart attack!! How were we going to get organized and book travel in that short of time? It is not easy to travel such a long distance with Jess. And, I also have my mom to worry about, my job and Chris does not have a replacement or anyone to cover at his job until after April 10th. I explained my delemma and I was able to request a little more time. They were incredibly understanding and so we are now looking to go for a screening appointment sometime at the end of April. If he passes the three days filled with physical, neurological and imaging tests, they will accept him as the 4th candidate in the study.

Here is information taken from a great article I found:

"We knew that some patients in MCS (Minimally Conscious State), including our subject (the first candidate), retain functioning brain networks above the brainstem," explains Dr. Schiff, who is also Weill Cornell's Director of the Laboratory for Neuromodulation.

"Activity within these integrated neural networks is supported by cells in an area of the brain called the central thalamus, which is thought to be key to adjusting brain activity as it responds to cognitive demands," he says. "Our theory was that electrical impulses targeted to this area would help amplify the existing low level of activity that we thought was already there," adds Dr. Giacino. "In other words, we assume that the signals that help drive speech and movement are still present in the brain -- we're just 'bumping up' their efficiency and function, to help get them working better."

The DBS (Deep Brain Stimulation) surgery targets deep-brain structures with millimeter-precision using computer-generated maps, image-guided navigation and physiological brain mapping. Tiny electrodes are implanted into these deep-brain structures and connected to programmable pacemaker batteries in the chest. The operation was complicated by the extensive damage to the patient's brain from the traumatic injury. The procedure was performed in two stages and lasted 10 hours. DBS surgery is FDA-approved and routinely performed for patients with Parkinson's disease. Various clinical trials using DBS for the treatment of epilepsy, obsessive- compulsive disorder and depression are also underway.
After an initial "titration" period -- during which the team calibrated the best dose and timing -- the patient began a 6-month, double-blinded on/off "crossover" trial, with periods of DBS alternating with periods where he did not receive the therapy.

"Without further study, we have no means of knowing for sure that the functional improvements we have observed will be seen in other subjects, yet we expect that we will find other patients who will respond," Dr. Schiff says. "We can say that this patient's recovery of oral feeding and communication abilities was strongly linked to the DBS. But even more encouraging is the fact that the patient's functional gains continued even during the off-phase, suggesting a carryover effect from treatment."

Will the DBS-treated patient continue to improve? The researchers say it's still unclear, although the brain's innate plasticity means the man could build on the gains he has already made. This first DBS procedure is part of an FDA-approved pilot study that will include 12 patients in post-traumatic MCS." Here is the link to the article if you are interested: http://www.sciencedaily.com/releases/2007/08/070817215750.htm#

If they can "jump start" Jess' brain, we truly will finally get our miracle. I will find out more next week and will post information as I get it. With everyones help, we will be able to do this pioneering procedure for Jess. It is a major decision for us to make and we need your prayers and trust that this decision is going to give Jess back some quality of life that he so deserves. Thank you and our love goes out to you all!

We are going to Cleveland!!!!

We finally got the phone call and the doctors loved the video and are excited to work with Jess. I don't have or know when or how but I will be back with more info when I get it. All I know is I asked for the "right" answer and I got it!

Jamie made it driving to Minneapolis and is moving into a new place today. Thank you to the powers above for her safe journey. Jahara and I fly out of Boise tomorrow and I get to see my new grandson.

It has been extremely busy here having my little 4 year old granddaughter all week. Jess is doing well and doing suttle new things. I better get busy packing. I will be back Wednesday and hopefully will have more good news about the Cleveland Clinic.

P.S. Curtie let us know he has a new website. Check it out:

Hello everyone and hello Jesster buddy man, buddy dude. Yep, sounds like me, doesn't it? Just stopping by and saying hello for the first time in a little while. Hope all is well and good, as it is here. Kind of bored at times, but I can keep myself occupied pretty well. If y'all want to leave me a note, my website is curtisland.50megs.com (I got a guest book). It might be easier to get the word out if Pam posted it on the next post, so Pam, could you plese do that? Thanks much, and I'll see you all later!