Still waiting...

We are still waiting to hear any news from our trip to Cleveland. Maybe this week!

We heard the dance a student, Mauro Zavala, organized in Ketchum for Jess was a great success! What a wonderful young man to think of Jess and incorporate his senior project all in one! Brandie took Jess into the dance but they went pretty early and didn't stay long so they didn't get to socialize much. Jess gets pretty tired after a long day at school and so does Brandie. Thank you, Mauro, for showing your caring and wonderful spirit to Jess! Hopefully, we can meet you soon!

We are home!

We made it home from our trip to Cleveland. It was quite the trip! Everyone was extremely kind and considerate at the Cleveland Clinic. It was so nice to have such a good experience in a hospital environment. The facility was amazingly large with approximately 32,000 employees. We were able to walk to our many appointments from our hotel room on the campus. Unfortunately, Jess did not respond very well for the first couple days. We discovered he had an ear infection which must have been miserable while we were flying. We were able to get him some antibiotic ear drops and it really helped the next few days. I arrived home with a 102 temperature and have been very sick with the flu since we got home so we are wondering if Jess was sicker than we thought with more than just an ear infection. We were so blessed to have Chris' mom and sister there in Cleveland. They helped us with supplies for Jess and goodies for our hotel room and Chris' sister Jenn provided us with transportation. His mom made us some wonderful meals and we felt so lucky not to be alone in some big city doing what we were doing. We love you guys!

The people at Northwest Airlines were incredible too. They had assistance for us at every airport and allowed us to be the first to board the airplane. The flights were difficult though due to the seats not reclining enough to support Jess' head. We had to take turns holding him up or repositioning him so he would be comfortable. We had one gentleman offer us his first class seat but we couldn't accept because we could not let Jess be by himself. Even those seats didn't seem to recline much.

We are glad to be home. We do not have any answers yet but hopefully we will know something soon. Everyone was encouraging and of course got attached to Jess quickly.

When we got home we read a wonderful article in the paper about a fundraiser being held for Jess. We are so grateful to Jess' Quest class at school. They are having a car wash for Jess today and tomorrow in Hailey. They wanted to help raise some money to help us with the trip. They also are getting petitions signed for the People Safe in Rollovers Foundation to help support the bill proposed for Congress to pass which will adequately strengthen roofs and substantially reduce the annual deaths and catastrophic injuries due to the crushing of roofs in rollover accidents. I heard they already have over 200 petitions signed. We are so excited that there is going to be a senate hearing on this issue in June. We can't thank everyone enough for their support. Chris and I stopped underneath Jess' billboard in Boise on the way home and had a quick lunch. We were so impressed and amazed at the size and location of the billboard. We hope everyone passing by will investigate why it is there and help in the crusade to save others from going through what our family and so many others have been through.

Thanks for checking in!

The Billboard is UP!!!

I have wonderful news! Jamie called to tell us her friend in Boise called her to let her know she saw Jess' billboard (click on billboard to see what it looks like)!!! She said it is on Chinden Boulevard near Curtis heading back in to downtown Boise. She said it is very noticable and you can't help but want to read it. We are so excited! It is our way to honor our Jess and a way to help People Safe in Rollovers get the word out to everyone driving by the billboard how important the issue of roof crush in vehicles is. Thank you so much to all of you who donated to get this billboard placed. If you are in Boise, please go check it out.

In fact, Paula just called me to say that Senator Mark Pryor called her to say the roof crush issue is going before the Senate on May 6th in Washington D.C. This is such wonderful news! This is how we can get action and how we can make a difference. She asked us if we could attend. I would love to take Jess but, oh my, the logistics are overwhelming. Where there is a will...there is a way, though, so we will see.

We have our airline tickets and are ready to take Jess to Cleveland next week. We will know on the 17th if he is going to be accepted into the 2 year study. I will be updating the website on the 23rd. Thank you everyone for the well wishes and prayers for our safe journey.

Jess has been doing well. His dad got him to blow out a flame the other day. He actually pursed his lips to blow which is a huge accomplishment. He also tried very hard to reach a ball that I tied on a string from the ceiling above his bed. You could see his concentration and effort to move his arm and open his hand to reach it. He has also been kicking his foot off of his foot rest on his wheelchair and raising his knee off of the bed when he laying on his bed. I think he is practicing so he can pass the tests in Cleveland. His smiles have made our days! Here he is smiling at his long time friend Mikey.

A Change in Plans

A call from Jenna at the Cleveland Clinic changed our plans...again. She confirmed that "if" Jess is chosen as a candidate for the surgery it would not take place until July. We would need to be in Cleveland for a month of rehab before the surgery (to establish a baseline of where he is right now) so we will be going in June if he meets the criteria. Instead of packing the trailer for a 6-9 month adventure I now have been scrambling to get airline tickets for April 14th through the 22nd so we can get Jess to the Cleveland Clinic for evaluation.

I booked tickets on Northwest and ironically we have a layover both ways in Minneapolis. I called to see if Joey could get a gate pass to help us transfer Jess in and out of the planes. It will depend on the airport security. Jess is so long legged it is hard to get him into the little aisle wheelchairs they have so Chris usually ends up carry him onto the plane. It would be nice for him to have big strong Joe to help. Not easy carry someone who is 6'2 and 155 pounds and putting him in a small space. Without neck and trunk control, he has a hard time sitting in the seats without a deeper recline. We take his neck brace and end up supporting his head most of the flight. It's been two years since we've flown with him so maybe it will be easier since his neck has gotten much stronger. We have to gate check his wheelchair so we can get him from one gate to the other. Thankfully, they are going to provide us with a wheelchair van to get us from the airport to the hospital.

They have 3 hotels on site. One was $260 a night, the other $160 and one comparable to a Holiday Inn will give us $99 a night since we will be there a week. We have to take a lot of stuff just to care for Jess in a motel room. Unfortunately, the grant to help with expenses doesn't start until he is accepted into the study. But, we are so grateful for this opportunity... it will be worth the money and the hassle.

I have been home alone during the days Jess is in school and my house is echoing. I can't remember when I have had alone time at home. It's been almost 4 years of just trying to keep up with everything, now I get to catch up. I keep thinking I need to go check on someone, though. Today would have been my parents 70th wedding anniversary and dad will have been gone a year on the 6th. I do miss them both. When mom talks to Jess on the phone he smiles and moves his lips like he would love to say something to her. She is doing well and has lots of visitors with my aunts, uncles and cousin close by.

Jess' friend Dustin stopped by and again Jess just lit up to see an old friend. He moved so much when Dustin left I thought he was going to jump out of bed and yell, "wait for me". I can't imagine what his world must entail. I hope it is not as bad as we feel it might be and that he isn't as frustrated as we think he is. Only Jess knows!

I emailed a lot of you the good news about The Insurance Institute for Highway Safety (IIHS) study on roof crush. Here is the article from USA Today http://www.usatoday.com/money/autos/2008-03-11-car-roof-safety_N.htm#chart.
Please check out your vehicle and make sure you or someone you love is not driving the ones that our dangerous. Here is another site that gives you info on any car http://www.iihs.org/news/rss/pr022608.html. Everything we tried to show in our lawsuit against Ford has been confirmed. I just wish the judge and jurors could have understood. Thank goodness for people like Paula Lawlor (People Safe in Rollovers) and the father of the boy who was killed in the same Explorer Sport Jess was in for their commitment to right a wrong. I wrote many letters to Senators, Governors and the National Traffic Safety Association but their constant pressure made the difference. I wonder how the Ford attorneys sleep at night!

Love to all...

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!