Jumping Out of Bed

7 am this morning I awoke to Jerry, calling me, you know that voice kids have when you know you better run? I jumped out of bed so fast I felt faint, and ran into Jerry's room to find that Jerry had literally jumped out of bed and was laying on the floor. For a brief second I felt a sense of fear and panic, my mind raced through several thoughts in a split second. Did he sustain any serious injury?  How am I gonna get him off the floor? Did this happen in one swift kick or multiple? Jerry said I'm Ok and it was all I needed to hear to take a deep breath, get my wits about me, and take action to get Jerry off the floor. I was thankful to find that the Hoyer lift does drop low enough, (just barely) to pick up from the floor. Once I got Jerry back to bed I did a thorough inspection for injuries, thank the Lord no injuries. What an adrenalin rushed way to start the day. I'm sure some of you are wondering why Jerry's bed rails weren't up, the bed he's in right now does not have bed rails, we never needed them before. Jerry has 2 beds and switches back and forth, bed 1 is the bottom of the barrel piece of you know what with no rails, however the mattress alternates and is awesome for reducing pressure points, bed 2 is the top of the line luxury edition however the mattress does not alternate and Jerry's butt fall's asleep. Unfortunately the mattresses are not interchangeable, so Jerry switches back and forth between beds.

Jerry's spasticity and muscle spasms have increasingly gotten stronger since his brain injury. Jerry never had to take spasticity medication before the brain injury however now he does and we've had to increase it twice. Two weeks ago he had to double his medication and it's helped a little but not much, I'm fearful his doctor will want him on a Baclofen pump, I pray not. Jerry's legs will quite literally kick and jump 2 feet off the bed. He's kneed me in the chest pretty hard and gotten real close to kneeing me in the face a couple times, good thing I move quick, lol.

I mentioned above that Jerry's butt falls asleep, I know for Jerry it's very uncomfortable, we have to keep rolling him side to side and it's hard for him to get relief. For me I find it encouraging ...3 months ago Jerry could not feel anything below the chest line and now he can feel when his bottom is asleep. It's incredible to think that 4 years post injury Jerry is still getting some return if even just a faint tingling in his bottom, it helps to keep hope alive for more to come.

katie

For those of you who haven't heard yet, a nationally televised TV show called Right This Minute will air Jerry's story tomorrow morning, including a skype interview with Jerry and I. The show will be aired locally on KTVU channel 2, there are 2 shows that play back to back from 9 to 10 am, Jerry's story will be on one of them. If you don't live in the San Francisco bay area but want to watch you can find the tv network in your area that will air the show here: http://www.rightthisminute.com/about/stations. You can also watch the show from their Rightthisminute.com website. Ok I'm clearly not ready for show biz, lol but glad to the chance to share Jerry's story. 

Katie

The spaghetti fundraiser is coming together and coming up quick, I'm posting the flyer here and distributing around town. If any of you Valley folk are inclined feel free to print and hand out to friends and family. If you plan on coming to the the dinner it would be awesome if you could RSVP ASAP to give us an idea of how much food to get. You can rsvp to rsvp@followingjerry.com or call 831-338-3169 to let us know how many adults and how many children in your party as well as if you prefer meat or vegetarian sauce. We are very excited and can't wait to see you all there.

gofundme

The fund raising efforts are ramping up! Plans for the spaghetti feed are coming together, mark your calendars for June 8th 4-8 pm more info to come. June 26th we maybe having a free social event, music and refreshments in the park, we're still trying to secure the location, will keep you posted. The gofundme campaign has started with a bang. We've raised $680 in less than 22 hours, I know our page says 13 days however I set up the account 13 days ago but it didn't go public until last night. Thank you to all those who have donated so far. If this is the first you are hearing of our gofundme campaign I encourage you to click on the link below and check it out. From our gofundme page you can share it with your facebook friends and email it to your contacts if you are so inclined. Thanks to all of you who are already circulating this through email and facebook.

Spaghetti Feed

We finally are making some headway on fundraiser planning thanks to Sharon Ferry who has stepped in and got the ball rolling, keeping me motivated and moving forward. We will be holding a Spaghetti Feed June 8th at the Boulder Creek Fire Department so mark your calendars we hope to see you there. Keep checking back for more information, I'll keep you posted as details arise.

Sponsorship Letter

Not much has changed since my last post Jerry remains in relatively good health, he continues to work on improving his speech and it seems to be helping. I've continued my quest of trying to find affordable suitable airfare to Thailand but have had no luck at all and time is running short. I fear we may have no other choice but to fly coach. A friend had a good suggestion of purchasing an extra seat, it's a couple thousand more as opposed to $20,000, then I could turn Jerry sideways and stretch him out across my lap. Not the best solution but it is one option, I have about 2 weeks to figure it out and then I will have to book flight regardless.

You may have noticed I've added a sponsorship letter page the link is above, you can also access it by clicking here. If any of you feel comfortable distributing it please feel free to print and pass out to friends, employers, rich uncles or anyone you think would support Jerry's cause.

Best wishes,
Katie

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 katie@followingjerry.com. 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.

Katie