Tuesday, January 31, 2012

January 31, 2012

Thank you to all who still follow and care about Jerry's progress, I apologize for letting so much time pass since the last post. I run into people I don't see very often at the super market and am reminded that people still care and miss reading updates on how Jerry is doing. I feel that I'm not a very good writer and what I write is not all that interesting however people still ask for updates so I will try to be more diligent about updating, at least once a month.

It's been so long since I've posted I don't even know where to begin. This has been one of the most difficult years of my life and I think Jerry's as well, which is one of the reasons I haven't posted. I suppose I should start where I left off Jerry and I flew to GA in June for power soccer, which was a wonderful experience. Jerry's first plane ride was a learning experience to say the least, I was amazed how smoothly it went considering we traveled with the team and there where about eight team members in wheelchairs to pre-board the plane. The process was interesting, Jerry could only take one wheelchair so he was stuck in his soccer chair for the duration of the trip which is not very comfortable for him but he handled it very well. Getting the wheelchair through security takes a little more time then I expected, we were taken into a small private room at which point I could no longer touch or stand near Jerry. The security officer then has to pat Jerry down for weapons, the challenging part was he did not have experience in handling a quadriplegics body in the sense that he needed to lean Jerry forward to check behind his back but he didn't know how to do that on his own and could not allow me to help, I had to give him verbal step by step instructions. When that was complete he had to wipe down Jerry's chair as well as his hands and shoes with a special cloth which was then tested for explosives. Once we got through security and were ready to board it got a little bit hectic. I was told in advance that wheelchairs are not handled well when put into cargo and often come back broken. To avoid this you bring a duffel bag and disassemble the chair and put the parts (joystick, arm rests, feet rests, neck rest, head switch etc.) into the duffel and bring it as a carry on. The problem with this is they will only give you about 1 minute to disassemble and you cannot begin until Jerry is out of the chair. Luckily the coaches where there to disassemble the chair so that I could get Jerry boarded. Once we got to the bottom of the boarding ramp I had to transfer Jerry into the airport manual wheelchair designed to fit in the plane isle, the assistant wheeled him to his seat and I transferred him into the seat. Jerry is 6'3" tall and does not fit in coach very well, his knees hit the seat in front of him and his head was higher then the head rest so needless to say it was not a very comfortable flight for him. If we ever make it to China he will have to fly first class.

We had ups and downs while in GA but mostly ups, it was difficult adhering to the schedule of others and being up and out of the hotel early morning, there was a lot of rushing and running late on my part. Jerry also had difficulty controlling his chair and was disqualified his first game for lack of control in the pre-game testing. Jerry didn't get much play time in the remaining games but he was ok with it, it was to much pressure, he didn't want to screw it up for the team because he couldn't control his chair. Our team took 3rd, everyone played very well. All in all the trip was wonderful and a huge learning experience on how to travel as a quad.

Shortly after returning home Jerry was admitted to the ICU for another Pulmonary Embolism (multiple blood clots in both lungs), he spent about a week in the hospital.  Jerry's doctor felt the embolism was a result of the flight, which isn't all that uncommon in people with his condition. Jerry had to go back on blood thinners and have PT-INR checks done by a vising nurse weekly. The original discussion is that Jerry would have to remain on blood thinners for life with regular INR checks, however we later discussed Jerry getting off the blood thinner after 6 months and only taking it a week before and after he does any traveling. To date he is still on blood thinners but I think it's time to advocate for him to discontinue.

In late July I took Jerry on his first camping trip as a quad, it was both challenging and very rewarding.  Jessica, her boyfriend Jack, Jerry and I drove 6 hours to Trinity Lake up near Redding, and met up with friends. We had so much fun, even Jerry who was reluctant to go and had to be bribed and coerced had a blast. I brought both Jerry's wheelchairs (power and manual) because I wasn't sure if his power chair could handle the terrain. We only got into a couple of spots where the wheelchair got stuck but it wasn't to much trouble to get around it. I had two queen size air mattress that I stacked on top of each other for a bed for Jerry. I devised a method of transferring him in and out of bed via the tent back door which is difficult to explain and even more difficult to do. The transfer from the wheelchair to the bed was a piece of cake but from the bed to the wheelchair was a whole new ballgame, to say difficult would be and understatement. Our days were spent in the lake and our nights around the fire. We put a life jacket on Jerry and transferred him into a raft which we tied to the kayak, Jack and Jessica would row Jerry around the lake in the kayak. Our friends Dana and Jim have a boat so one of the days we were able to get Jerry on the tube and Dana pulled him around the lake. Thank you Dana for that awesome experience!

Jerry Playing the maraca's drum night around the fire

We had so much fun camping we decided to take another camping trip a few days after returning home. The second trip never happened due to an accident.  I had everything all packed and loaded in the van, ready to go. The lift on the van had been broken for some time and the cost of repair was more then I had so we had been manually operating the lift. The in-out did not function electronically however the up-down still worked, to manually operate the in-out you unlock the lift grab hold of it and pull it out, when done push it in and lock it, the lift is located under the vehicle. After loading Jerry, Jack and Jessica we were off for our next adventure. We did not get far, just down the street, I had forgotten to lock the lift, as we went down the hill just before passing a tree the lift flew out, hit the tree and was ripped right out of the van. We spent the next 3 hours trying to figure out how to get Jerry out of the van. We wound up driving to a motor cycle shop and borrowing ramps used to load ATV's into the back of trucks. We were able to get Jerry/wheelchair out of the van, we transferred Jerry into another vehicle and put the wheelchair back into the van. Once we got home we were able to use the hoyer lift to get Jerry into the house and Dennis built a ramp to get the wheelchair out of the van.  The cost to repair the lift came to a whopping $15,000, it took almost 2 months for the insurance to determine that they were totaling the van and paying out $8,000. Needless to say that was devastating, affordable used handicap vans that will fit Jerry are hard to come by. It took another month to find a van that we could afford, now we have a new van that is actually older then the old van but it's working for now.  

In late August Jerry was signed up for a computer class and calculus 2. However we had no transportation so we were dependent upon para-cruz. The process to sign up for para-cruz took about a week so in the process Jerry missed the first 2 classes of calc. He decided it would be to difficult to come in late so he dropped the class. I wound up taking the computer class with Jerry so I could help him out, the semester went well, we both got A's. It was a little challenging because it was a night class and we were at the mercy of para-cruz and the commute traffic on the fish hook. 90% of the time para-cruz dropped us 10 to 20 minutes late to class, the teacher was very understanding of the circumstance. The semester ended in Dec, however the next semester does not start till the week of February 6th. It's been a very long break. 

Jerry has spent nearly the entire break in bed, he did go to a San Jose sharks and a 49er game, he continues to go to therapy in Pleasanton once a week and had a few visits from friends over the holiday. Other than that Jerry has spent most his time in bed, not wanting to get up or go out. Jerry quit the soccer team when we were with out a van and now refuses to go back. My heart breaks for him as he becomes more reclusive, lonely and depressed, he seems to be on a downward spiral of despair. Jerry is struggling with the will to live and to find purpose for his life. Jerry expresses that he does not want to live a life in his condition, that he wants to advocate for his own death but does not want to hurt his family. Even as I type this the tears stream down my face, he has lost hope and I don't know how to help. Jerry is struggling in believing there's a God and quite frankly I'm having my own struggles in that department.  I haven't lost my belief in God but I struggle to understand and accept what ever his plan may be, I've lost my desire to pray as I've come to the conclusion that God's plan will not be altered by prayer so whats the point. God has a plan ....let it play out, we are just pawns. 

I've struggled with weather or not to talk about this last bit of news as well as the previous paragraph. How much should be shared and how much should be kept private? Should I only update the positive and leave the negative out? ...that's what I would prefer to do but somehow it feels fake and dishonest. I need to be real and honest, life is not always roses. So here goes Dennis and I have been living separate lives for the last year, there is no fixing what is broken and we are getting divorced. Beyond that I will leave the details out, those of you who know us well know the details, those that don't know us so well really don't need to know. To complicate matters further Dennis lost his job  and as a result we also lost medical and dental insurance for the family. Dennis has desperately been searching for work, he was contracted to do a job in Gilroy, I just hope that it will lead to more work as the family is dependent upon his income for survival.  The home that we live in was part of Dennis' employment, now that he is no longer employed they have given me one year to stay in the home. They have been very generous to allow the kids and I to stay in the home rent and utility free for one year. I am eternally grateful for the kindness however I'm still very worried about the future where to go beyond here.