Graduation

We made it through the emotional last week of school. We did not go to the graduation exercises. It would have been too emotional for us and too stimulating (seizures) for Jess. Unfortunately, there was a tragic accident as a result of the parties held in honor of graduation. Two teenage girls were killed in a rollover coming back from a canyon party. I worry so much at this time every year. No matter how you try to enforce safety to kids...they think they are invincible. Our thoughts and prayers go out to the families.

The girls were in a 1993 Jeep Cherokee which is one of the worst vehicles for rolling and roof strength. I bring this up because tomorrow is the Senate hearing on roof crush in rollovers. Please send your good energy and letters to senators if compelled to change the law on making our vehicles roofs stronger. I was not able to be there but we will be in spirit.

We are still in limbo as far as the Cleveland Clinic goes. We are just trying to go on with life and not put too much emphasis on the possibility. The anxiety is too much to handle.

Jess has been very alert lately. I was able to get him to grab a large metal spoon out of a metal mixing bowl yesterday. His hand does not work the way he wants it to but he was determined to figure out how he could make it grab the spoon. He also was able to put it back in the bowl and drop it. I think he liked the noise it made. I can't tell you how excited I was to witness his ability to think about what he wanted to do and make it happen. I am reading a book about the plasticity of the brain and how we can retrain our brains. It is giving me the reassurance that we must keep trying new things with Jess and keep letting him know that he can get better and that he is doing an awesome job.

Chris and I reflect on the fact that it has almost been 4 years since the accident. A very long 4 years. We have had many new friends and many wonderful people come into our lives and support us through those years and we thank them all. Here is a letter I submitted to the newspapers relaying our gratitude but I don't think they are going to print it so hopefully it will touch some of those who it pertains too. We love you all!

May 27, 2008

To: An Amazing Community

We are amazed at the support, generosity and compassion we gratefully receive from this valley. We want to thank everyone who participated in two fundraisers recently held for our son, Jess Matey.

The Quest Class at the Wood River High school had a car wash provided by the Valley Car Wash. The students graciously donated the proceeds to help Jess with medical expenses and travel incurred on a recent trip to the Cleveland Clinic. He is being evaluated for a specialized deep brain stimulation procedure that may help him walk and talk again. The kids were amazing and spent two days at the event. They also helped to get 400 petitions signed for the June 4th Senate hearing organized by People Safe in Rollovers in Washington D.C. The goal is to get the auto industry to strength the roofs in our vehicles.

Mauro Zavala organized a dance at the Next Stage Theater for his senior project. He also donated the proceeds to Jess. We are so grateful to Mauro and all of the students who supported the dance and reached out to help a fellow student.

This is Jess’ last year attending the W.R. high school. We thank all of the students, staff, administration and therapists that welcomed and helped Jess at school every day. We especially thank Brandie Hopwood, the para pro and caregiver who drives 4 days a week from Mackay to be by his side and take such awesome care of him.

Jess has been riding at the Sagebrush arena for the last 4 years since his accident. We thank the outstanding staff and wonderful, important volunteers assisting him twice a week.

This community is like no other. We could not survive this difficult journey without so many people. The wonderful friends, therapists, alternative therapists, EMT’s, E.R. and hospital staff and strangers that have come to our rescue are appreciated beyond our words. We truly are blessed and forever grateful to each and every one of you.

Pam, Chris & Jess Matey

One week left of school

Jess only has one week of school left. He graduates this year and will receive a diploma. He only needed 5 credits in 2008 to graduate. It will be the end of our having kids in the school district for the last 30 years. I wish Jess was on his way to college. He wanted to get his computer science degree. We are not sure what direction we will head now.

Brandie is pregnant and will be leaving us on July 3rd...Jess' birthday. She has been an incredibly wonderful addition to our family and we will miss her very much. We have not heard from the Cleveland Clinic so we have not been able to look for someone to take her place. This is a real test in patience!

We have gotten Jess to blow bubbles through the little kid's plastic wand, make a sound on a harmonica and blow on a whistle. Tracy, our speech therapist, has gotten him to stick out his tongue and touch his lips. He is still trying hard to lift his left knee up and his eyes are tracking in all directions now. Little improvements that mean so much. We just keep on keeping on!

Happy Mother's Day to all!

If you are interested, there is going to be a doctor (neuroanatomist) on Oprah's website tonight that had a stroke. Because of her knowledge she knew what she was going through and explains what was happening to her brain during the stroke and how it took her 8 years to come back. Here is the link to read about it: http://www.oprah.com/xm/oprah/oprah_main.jhtml?promocode=HP_oaf .

Jess has been blowing out a flame consistently. He also pushed my hand away before I could change the bandage on his belly that protects his feeding tube last night and then he grinned at me. Yes! It was so cool. He has been moving his arm out of the way of his dad when he teases him and pretends to bite his finger for quite awhile, which is fun to watch. But, my Mother's Day present from him last night was him pushing my arm away several times and then grinning at me.

Jenn sent me a video on neuroplasticity http://www.hd.net/drr313.html that is really interesting. It talks about what meditation can do for the brain with an interview with the Dalai Lama. It verifies that exercising the brain is most important and shows how a stroke victim was able to relearn how to use his arm when he was not given much hope. We know the brain can repair itself. So, we wait!

Yesterday, we drove Jess to St. Anthony, Idaho where my mom is living now. We wanted to make sure he could see she was ok and in a nice place. He gave her a big smile when he saw her. It made her day! It was so good to see her. It made my day!

No news from Cleveland. Yes, we are very anxious!

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...