Friday, April 12, 2013

Recovery and Stem Cell Therapy

It has been far to long since my last update. The past 9 months have been somewhat of a blur, I'll do my best to recap the highlights. After leaving Valley Medical 9 months ago it was so good to be home however it was one of the most difficult times of our lives. Jerry suffered sever anxiety about being alone even for a few minutes, which meant me staying in his room with him the majority of the time. During the first two months home Jerry didn't know what to do with himself, he had lost the ability to do things he could do prior to the brain injury, ie navigate his computer, play games, drive his wheelchair. Jerry spent a lot of time watching TV, it seemed he had no interest in the things that he was passionate about prior to the injury. Jerry loved football, Aliens and Government Conspiracies, but suddenly these things meant nothing to him and he had no interest in any of it. Jerry had very little to look forward to prior to the brain injury and now it seemed even that was gone, it left us both with a deep feeling of despair. I knew he couldn't spend the rest of his life in bed watching TV, with me by his side flipping the channels, it would surely send us both to the funny farm. I had to get Jerry back to the things that gave him pleasure before, but it wasn't going to be easy. With much resistance Jerry began to try and use his computer again, he had forgotten everything and had to relearn how to use the chin mouse and navigate the software. Slowly the information highway in his brain began to reconnect and things came back to him. It started with a tolerance of about 5 minutes and has now worked back to the point he was prior to the brain injury. Jerry is not as fast with the chin mouse as he used to be but he continues to improve and I'm very happy to say that he has regained the passions and interests he once had. In the fall of 2012 Jerry decided to go back to Cabrillo College, he signed up for the same class he was in when he went into the hospital. Attending class for one week was enough to know that Jerry was not ready, it was definitely to soon so he dropped the class. The plan is to return to school fall of 2013, he's improved significantly, I'm certain he will be more than ready then.

In January Jerry finally received the full neurological evaluation that we had waited so long for, the results are complex and hard to interpret. I'll do my best to summarize, Jerry's attention concentration is impaired, his speech is impaired. There are several different aspects to learning and memory skills, Jerry falls in the average on some and below average on others. In verbal fluency he falls into impaired range. Jerry had speech therapy at home for a few months and continues speech on an outpatient basis in Santa Cruz. Jerry's speech is still slightly impaired however it has improved significantly.

In the first few months home Jerry was very impressionable, he would see a commercial for Applebee's and suddenly he would insist that we go to Applebee's right then and there, it didn't matter that if was 45 minutes away and 8 o'clock at night. We were going to Taco Bell, Subway the movies at the drop of a dime, we went to the movies two to three times per week every time a new preview came out. It gave hating commercials a whole new meaning, lol, but it did get us out of the house so it wasn't all bad. I had to put my foot down when he saw a commercial for the San Diego Zoo and wanted to hop in the car and go, I promised him we would go but it would take some planning. Jerry also went through a short phase of having to watch The Price is Right game show, if he missed it it disrupted his routine and upset him. Jerry has now returned to his old self in the sense that commercials don't send us running out the door and missing a show does not send him over the edge. This past week I fulfilled my promise we went to visit Josh in San Diego and spent a day at the Zoo, we even attended the taping of The Price is Right in Hollywood, unfortunately we weren't called to "Come on Down" but had a blast nonetheless.

I know that many of you were concerned with the housing situation for the kids and I after Dennis left and to be honest it was a source of intense stress for me; as the move out deadline approached the fear intensified. The fear and stress of it all was laid to rest in mid November when I received great news. Redwood Christian Park and the powers that be has blessed me beyond imagination, I was given permission to remain in my home of 22 years with my kids. The generosity of RCP and it's staff has helped to restore my faith and belief that God will take care of us. To be honest I reached a breaking point in my faith with Jerry's last hospital stay. With all that we have been through in the last 4 years, I finally began to question "Why"? I still don't know why we as a family have had to suffer so greatly and I'm certain I will never understand it, but once again I find comfort in knowing that God has a plan, he cares for us, and puts people in our lives that love and support us and for that I am eternally grateful.

Jerry will finally be getting stem cell therapy. Two years ago we began working with a company called Bieke Biotech which supplies stem cells for China and Thailand. Initially Jerry was accepted into the program and assigned to a facility in Beijing China. With the cost of procedure and travel expenses exceeding $40,000 we were unable to cover the cost and unfortunately had to cancel. After Jerry's brain injury it became more critical than ever to try stem cell therapy.  I reached the conclusion that I must proceed with plans to go and have faith that it will all come together. We started the application process and Jerry was once again accepted into the program however with the addition of the head injury it was felt that Bangkok Thailand was a more appropriate fit. I'm very happy to say that Jerry is scheduled for therapy July 1-Aug 9th, 2013, we will be in Thailand for 40 days. I was able to get financing to pay for half and I have $10,000 in savings from previous fundraisers. I still need to come up with about $10,000 for travel expenses and the remainder balance for the procedure, so unfortunately I will have to plan a fundraiser or two. The procedure needs to be paid in full by June 1st, time's a ticking and going by fast if any of you are willing to help plan a fundraiser or can participate in any way please email me at One thought that came to mind is an airline miles drive but I'll need to look into how that would work. If any of you followers has connections with an airline and would be willing to be a go between please let me know. Currently the airfare to Thailand is about $1,700 per person for coach. Unfortunately Jerry cannot travel that distance in coach, being 6'3" he does not fit well, his head sits above the headrest and his knees hit the seat in front of him. Jerry traveled coach to Georgia and there was no room for me to try and move him in any way to keep circulation in his legs, as a result he wound up in intensive care with a pulmonary embolism. I cannot risk a recurrence,  Jerry needs to fly first class so that I have the room to manipulate and massage his legs. Unfortunately 1st class airfare to Thailand is about $11,000 per person, I've contacted a couple airlines in hopes that under the circumstances they would be willing to give us a free upgrade, provided we purchase coach tickets, or at the very least discount the 1st class rates. Needless to say they were not receptive to the idea, I climbed the ladder of supervisors as high as they would allow me to go but to no avail.

That about covers the update, thank you all for continuing to follow Jerry's progress, thank you for caring, praying, loving and supporting us through this journey life has presented us with.