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...
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...
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