Friday, November 8, 2013

New Feelings

Jerry has had some new feelings since my last post, it seems that he is having a sensation of feeling the water when he takes a bath. Until now Jerry has had no feeling below the chest line at least where water is concerned, on his arms he can feel pressure but it diminishes the farther down the arm you go. Concerning water however Jerry has not felt it below the chest line since the neck injury, that is until about 10 days ago. When in the bath Jerry felt the water on his middle finger and within minutes the sensation went up to his wrist. The feeling is not like the warmth you and I would experience, his body is interpreting it differently, it's difficult for Jerry to put into words the feeling but he says it's kind of a feeling of coldness. A Few days later while in the bath Jerry experienced the same feeling in the left foot and ankle, it's interesting to note that these feelings began on the left side of his body. The left side of his body was the first to regain movement in the bicep and to regain a little strength. With each bath Jerry feels the sensation in a new part of his body, he now feels it on both sides of the body however in some areas the feeling is stronger. Today's bath Jerry felt the cold feeling on his butt, our hope is that the body is regaining the ability to feel below the level of injury and that eventually it will interpret these feelings accordingly, warm as warm and cold as cold. These are baby steps hopefully toward a much larger recovery, I'm thankful it's one step closer toward the goal.

Katie

Wednesday, October 16, 2013

Update

It's hard to believe that we've been home from Thailand for 2 months already, the time has gone incredibly fast. Life has been busier than ever, it's becoming a little difficult to keep up with everything. Jerry is back in therapy at SCI-FIT in Pleasanton 2 days a week, he really is enjoying being back and working out with the trainers. Some of the trainers have mentioned that he seems stronger in his core as well as his legs seem to be responding differently when doing gait training. They've even mentioned how he seems so much more like the old Jerry before the brain damage. It's encouraging when other people notice the positive changes in Jerry's physical and mental health.

Jerry is also back in school at Cabrillo college 2 days a week taking the same class he was enrolled in prior to his brain injury, "Introduction to Programming, Java". Jerry had decided that he wants to develop a game controller for quadriplegics, setting this goal gave him a whole new outlook on life. He expressed how much better he felt having a goal to work toward, he's been struggling with what he's capable of accomplishing as a quad. After the first week in class, he again began to get very discouraged because it was so difficult for him with the brain injury. This was a class that he had breezed through before the coma and now he couldn't even figure out the most basic of things. I know how important it is for Jerry to get through this class, to boost his confidence and restore the hope that he can do anything he sets his mind to. I'm now in class learning right along with Jerry, so I can help him be successful and get through the class. It was so very overwhelming at first and each week is a challenge getting through the homework but we manage to get it done, many nights up til 1am doing homework but getting it done none the less. The teacher assigns 6 to 10 hours of homework per week however it takes Jerry twice as long as it takes others, it's not unusual for us to put in 16 hours a week on homework.

I received several responses to my request in last post about needing an acupuncturist, I appreciate everyone taking the time to respond.  We found a great acupuncturist so Jerry is now also going to acupuncture once a week. Between SCI-FIT, acupuncture, school, and homework life can be a little overwhelming but it's good and we are doing well.

Jerry started weaning off all of his medication before leaving for Thailand and since has weaned off of 6 medications. Jerry is now only on a blood thinner to prevent blood clots and a low dose of Valium to help him sleep. This is the first time since he broke his neck he is off of all the bad meds. The doctors in Thailand said that it would take about 3 months to begin to notice any changes in Jerry form the stem cell treatment. It's been a little over 3 months since the first injection and there are some positive changes. About a month ago I noticed that Jerry's body seemed to be responding appropriately to what was going on at the moment. I compare it to driving, you go through the motion without having conscious thought process about it, you aren't constantly thinking break, turn, accelerate, you just do it. What's going on with Jerry is similar, when I'm putting Jerry's pants on he will arch his back and lift his butt to help, when I turn him he'll kick a leg, when I'm sitting him up to transfer him out of bed into the wheelchair he assists in sitting up. His core muscles are so much stronger, when I pull his arms to sit him up he practically does a sit up. The crazy thing is that if you ask him to do these things he can't but if he is not consciously thinking of them his body responds appropriately in helping with the task at hand. I pray that somehow he will be able to connect to this movement in a way that he can control it.  A little over a week ago Jerry began to feel tingling in his body, in his right wrist and ankle at first and within 24 hours he felt the tingling over his whole body and to this day is still feeling it. A few days ago Jerry starting feeling a shocking sensation in one of his arms, yesterday he felt the same thing in his hamstrings and butt. I don't know what all this means, I don't know if it will turn into something more or give any mobility return but I'm so encouraged that something is happening and so hopeful for greater things to come.

Katie

Wednesday, August 14, 2013

Good to be home

Our trip home was fairly uneventful, we made it home safely, no bags were lost, no broken chair, we enjoyed the first class flight almost as much as on the way to Thailand. I had a couple friends take care of my yard while we were gone, I was just hoping to have the lawn mowed once before I returned but was blown away at how much work was put in. My yard has never looked so beautiful, after being gone for over a month I cannot describe the emotion I felt when I pulled up to the house and it looked so lovely, just an overwhelming feeling of happiness to be home. You know who you are, thank you so much for making our home coming special.

It's so strange to live the same day twice, we left Thailand Friday morning at 6am, spent almost 20 hours flying home to arrive in San Francisco by 9 am Friday morning. By the time we went to bed Friday night we had been up for 55 hours. I had about 4 1/2 hours of broken up sleep on the plane and Jerry had about 3 hours, exhausted doesn't begin to describe how we felt. 6 days later and we still have not returned to a normal sleep pattern but it's getting better.

It's imperative to keep Jerry's body in optimum condition in order for the stem cells to flourish. Jerry has returned from Thailand with a better outlook and motivation, he's going back to school at the end of the month as well as return to physical therapy at SCI-FIT in Pleasanton. In addition we need to continue the home exercise program and find an acupuncturist. If any of you know of a great local acupuncturist please let me know via post or email to katie@followingjerry.com. I truly believe the acupuncture was a great benefit for Jerry. Life is going to be very busy for us, but I'm so happy to see Jerry motivated again. 

It's great to be home, thank you to all who have helped, donated, supported, loved and followed us through this journey, we love you!

Katie

Friday, August 2, 2013

Moving Toes

Jerry received his 7th stem cell treatment Wednesday evening, which was a lumbar puncture. He seems to respond well to the lumbar injections, within 30 minutes he was able to move his toes when he tried. It takes a great deal of effort and he fatigues rather quickly however he was able to move his toes several times throughout the evening, hopefully a sign of more good things to come. It's a little disappointing and rather curious as to why the stem cells have an immediate affect but generally doesn't last much more than 24 hours. I am grateful though to have some sort of reaction, it helps keep hope alive. This never gets old for me, but I think Jerry gets a little tired of me asking him to move his toes....


The day after stem cell injections patients are supposed to have low activity and rest. Jerry had stretching and acupuncture in the morning and then had the rest of the day free, unfortunately he was supposed to rest so he couldn't venture out. I on the other hand decided I would take a little adventure. It was the first time leaving Jerry for an extended period of time, I left after lunch and returned late in the evening. The nurses were good about checking in with Jerry, feeding him dinner and keeping me posted on how things were going. There is a well known street in Bangkok called Khoasan Road, it was referenced in the book/movie The Beach. Khoasan Road is a world famous backpackers hot spot, with cheap hotels, street vendors, restaurants & pubs and much more, it has a real party atmosphere. I decided to make my trip to Khoasan Road a little more adventurous by traveling by boat. I took 2 trains and walked 2 blocks to the pier to catch the boat, it was a 30 minute boat ride and a few blocks walk before I found Khoasan Road.There are many ways to travel in Bangkok, train, bus, taxi, motorcycle, tuk tuk, boat, with the train your limited on where it goes, the bus is very confusing, the motorbike looks very scary the drivers drive crazy, but I'll have to try motorbike at least once before I go. I can't get over how economical it is to get around, the train was $1.34, the boat was .57 cents. After the day of souvenir shopping it was time to head back to the hospital, it was too late to catch the boat so I decided go get back by way of tuk tuk. I loved the ride in the tuk tuk, it could be very bumpy at times but it felt like a motorcycle ride, I loved being in the open air. The 35 minute ride back to the hospital was a little more expensive then the journey there...a whopping $5, it seems like it would be far more economical to use public transportation here than owing a vehicle. Here are a few pictures from my outing, the only thing that would have made it better is if Jerry could have enjoyed it with me.

 There are several types of boats transporting people

 These boats were super fast

 Below is the type of boat I was on


 Khoasan Road



The view from the back of the tuktuk

We have less than a week left, 1 more stem cell treatment and then the journey home. I'm so ready to get home, it's been a great trip but I'm getting home sick and miss my kids, I know Jerry is home sick as well. Thanks to all who have taken the time to leave comments, it's nice to feel a connection with home.

Wednesday, July 31, 2013

A Wonderful Dinner Out

The hospital has 2 facilities within a mile of each other, we are at the smaller facility which houses 8 patients and their families, I believe the other facility has about 15 patients. The hospital surprised the patients with a wonderful night out for dinner last night. It was such a wonderful surprise, the hospital rented a couple vans and bused all the patients and staff to a nearby Thai Restaurant. There must have been close to 80 of us, people from all around the globe coming together for a meal. The communication barrier made it a little difficult to interact with one another, families from Spain, Mexico, Germany, Italy, the middle east, there was only 1 other family from the US. All of us with a  common goal of improving the quality of life for someone we love.

The food was absolutely fabulous, the best I've had since arriving in Thailand, I wish I could eat at that restaurant everyday for the duration of the stay here but it's a little far. I was amazed at the end of the evening when I tried to pay for our meals and found out the hospital was paying for the entire evening. It was such a wonderful surprise and incredibly generous gesture on the part of the hospital.

Jerry has been able to move his toe and foot today but it's been random, one minute he's able to do it the next minute he can't. Jerry has a stem cell lumbar injection in about an hour, as always we're looking forward to it. Hope to have great news to report after injection. :)

xoxo
katie

Monday, July 29, 2013

Sunday Outing

Jerry had his sixth stem cell injection on Friday which was the last IV injection. The next 2 stem cell treatments will be lumbar puncture, he seems to respond better to the lumbar puncture. My last post showed that Jerry was able to move his toe after the last lumbar puncture. The following morning he was able to move his toe a couple times but has been unable to move it since then. With the IV stem cells he received on Friday he felt a little tingling, not as strong as before and not lasting long. Jerry seems to respond well to the cells, feeling an immediate reaction however the result is short lived. I look forward to the next 9 months and seeing what the cells will improve in Jerry's body. Jerry has his next lumbar puncture tomorrow evening.

On Sunday we went to a huge mall called Paragon, there's an aquarium and a huge cineplex. Jerry got a hair cut and then we went to the aquarium. The aquarium had a glass tunnel that goes through the shark tank, that part was pretty cool but after going to the Monterey Bay aquarium, it was hard not to compare. It was nice to just get out of the hospital.

After the aquarium we went to see a 4D movie at the cineplex, unfortunately they didn't have handicap seating, they required you to sit in their seats that move and jerk you around, it just wasn't safe for Jerry. We were going to watch a regular movie however the theater doesn't have attendant seats in the wheelchair section so we skipped the movie and went for pie instead and then headed back to the hospital.

I'm getting a little home sick, I'm looking forward to get back home.

K.

Monday, July 22, 2013

Overjoyed

Jerry had his 5th stem cell injection around 6 pm last night, thank you God the elevator was fixed. The procedures are done on the 4th floor, it would have been a bummer to delay the injection because of a broken elevator. Jerry had numbing cream with the first 2 lumbar punctures, I'm not sure why they insisted on applying it, he has no feeling in that area, for last nights lumbar puncture they did not apply the numbing cream. Jerry said he felt different with this lumbar puncture, he had a difficult time coming up with verbiage to describe what he felt, he said he thought he could feel the needle going in and he thought he could feel the liquid being injected. He tried to minimize it by saying it's probably because they didn't use the numbing cream or because he saw the picture of himself with the needle in his back from the 1st injection. I just encouraged him to think positive, he felt something different don't minimize your what you feel. Jerry didn't get the warm feeling this time, and the tingles were very minimal but he got something significantly better. I asked him to move his toe and he did, I couldn't believe what I just saw, I thought maybe it was involuntary so I said do it again he did. After about the third time I realized he was actually moving his toe voluntarily it was not involuntary movement he was doing it upon request. I ran to get my phone to take a video, it's short but here is your moment of zen.....

video

4th Injection & Safari World

Jerry had his 4th stem cell injection on Thursday evening which was a lumbar puncture. He felt a little bit of the warmth through his body that he had felt with his first lumbar puncture as well as  tingling over his whole body for 2 days. His biceps seem to be getting stronger and he's responding well to the therapies. Jerry gets the 5th injection this evening which will also be a lumbar puncture.

Jerry's decided to try and wean off most of his medications, he started the process a couple months before coming to Thailand. By June Jerry had weaned off all the pain medication he was taking. Some of you may remember the early months after the brain injury where Jerry was not sleeping, we had tried several different medications and combinations of medications to get him back to a normal sleep pattern, Jerry has been on a combination of 2 sleep medications for the past year. Since being in Thailand we gradually weaned him off one of the sleep meds, after a week off of that medication he began weaning off the second medication. Jerry has not had any sleep medication for about a week now and has been sleeping fine. A couple days ago Jerry began weaning from the antidepressant. Jerry was taking 3 pills a day but had reduced to 2 pills a day before coming to Thailand, for the past couple days he has only been taking 1 pill. It's a slow process but the goal is to be med free, I'm so happy that Jerry is finally on board with the idea of being med free.

Our Sunday outing was awesome, we went to Safari World which is a zoo but also a little similar to Marine World in CA. We had some logistics to work out with the driver, we were scheduled, then canceled, then with a little persuasion rescheduled. After taking us to Grand Place last Sunday the driver didn't feel safe transporting Jerry, because of the road conditions the chair bounces badly. With a little coercion they agreed that it would be OK if I transferred Jerry out of the wheelchair and into the van seat. It was actually a much smoother more comfortable ride for him. Jerry really enjoyed the Zoo, we closed the place down, we literally were the last two to leave, aside from the workers and some of them had left before us. It was so wonderful to have the entire facility be wheelchair accessible, it really made for a more enjoyable day. I take it back, there were two area's of non accessibility, but it wasn't that big of a deal. There's 3 miles of safari open area in which all the animals roam free together, the predators however are kept an area away from the other animals. The tour bus takes a 45 minute drive through the safari, unfortunately the bus was not accessible so we couldn't take the tour. The second issue was no family or single bathrooms only men or woman's bathrooms. Jerry wouldn't go in the ladies room so it was me going into the mens room, it wouldn't have been so bad accept they also didn't have handicap stalls so we had no privacy. It was just a little awkward catheterizing Jerry out in the open while men came in to use the urinal, you just never know when life is gonna throw you a mini adventure in the midst of your main adventure....lol. We didn't feel bad about missing the tour at all, we had a lot of other things to do in the zoo area, we really did have a wonderful day. The heat was really the only factor that put a little hindrance on the day but we just handled it and had fun anyway. Jerry absorbs heat but cannot release it by sweating, although I will say he is sweating in some areas now but not as much as he needs to help cool his body. I monitored Jerry's temperature throughout the day, he was good for half the day but once his temp reached 101 we found the only building in the park with air conditioning and sat in there for about 45 minutes until he cooled off. We continued our journey for another couple hours before Jerry's temperature reached 102.4. We found an area with misters and fans, I poured a bottle of ice water on Jerry's head, drenched his shirt then sat there for 45 minutes cooling off. After cooling off it was back to having fun, I tried to get Jerry to let me put a banana in his hand so he could feed the elephant and giraffe but he wasn't having it, he enjoyed watching me feed them though. One of the highlights was Jerry had a baby tiger in his lap that licked his face. The zoo was gorgeous, I thought of you Josh and Becky, you would have loved it for the plants alone, the whole park had the look and feel of a rain forest, very lush and green.


Upon our arrival back to the hospital we discovered the elevator was broken, we waited for about 30 minutes while the handyman/van driver tried to fix it, he determined it was out of commission until the repair service could come. Thank you Jesus we were not on the elevator when it got stuck, that would have been really, really bad, it's hot in the elevator and it took almost 20 hours to fix, I shudder to think. We had to find 4 men to carry Jerry up three flights of stairs in a sling, the van driver, the gate keeper in front of hospital, the night nurse and the father of one of the patients. Two spoke only Thai NO English, 1 spoke Thai and a few words of English but not much, the other spoke Spanish, no English what soever. Communicating a game plan for the carry was almost comical, but we managed to get him back up to our room unscathed, although the men were definitely huffing and puffing. Therapies were done in our room today while they finished fixing the elevator. Also the pool should be back in operation today, so aquatic therapy should resume tomorrow.

I forgot to mention that we have to move out of our beautiful spacious room tomorrow, so sad :( The room we're in should have cost an additional $2,000 however I didn't have to pay. When I scheduled Jerry's procedure I requested the single room which was included in the procedure, I didn't want to pay $2,000 extra for a suite however they didn't have a single room available so they gave me the suite free of charge until a single unit came available. A single room is available tomorrow and my room is booked for someone else, so tomorrow is moving day, oh well it was awesome while it lasted.

xoxo
Katie

Wednesday, July 17, 2013

Third Injection & Grand Place

Things in Thailand are going well, we've settled into a comfortable routine. Our days are filled with Jerry's therapies and our evenings are relaxing watching shows that Jerry has downloaded to his computer, right now it's Falling Skies.

Jerry had his third stem cell injection on Friday, he was a little resistant because it was scheduled to be an IV stem cell injection and he didn't feel anything with his first IV injection. Jerry felt warmth all over his body with the lumbar puncture stem cell injection so he requested the remaining injections all be lumbar injections. I asked that the injection be inserted directly at the sight of injury at the neck, the doctor explained the cells don't work that way. Injecting cells directly at the damaged part of the spinal cord does not ensure that the cells will attach there to repair the damage. I'm not the best at re-conveying technical information but my interpretation of what the doctor said is the body knows where the cells need to be sent to repair damage so the body will draw the cells to the area it's needed regardless of where they are injected. Just like when you cut your finger the body sends cells to repair the damage, it works the same with stem cells the body sends the cells where they are most needed. That's why it's so important to stay healthy and injury free in the first year so the cells will hopefully migrate to the damaged spinal cord as opposed to a cut finger or an infection. The doctor feels that by injecting into the spinal fluid and injecting into the blood stream you are covering all the bases so it's important to do both. After reluctantly agreeing Jerry received the IV and was pleasantly surprised when his body experienced tingling during the injection and for a little more than 24 hours after.  He said it felt like his whole body was tingling. This is very encouraging, like I said before it takes months for the cells to repair damage so there should be no expectation for immediate results but when he immediately feels sensations he has not had before it gives you hope for the future damage repair. Jerry has one more IV injection and four more lumbar injections, I pray he continues to have these encouraging signs that let us know things are happening for the good.

Sunday was our big adventure out into the city, the hospital van took us to the Grand Place & Temple and dropped us off. The distance is not far from the hospital but traffic is insane here so it took us a little over an hour to get to the palace. The ride was a little uncomfortable for Jerry, a lot of the roads are in bad disrepair so it was a very bumpy ride, the driver didn't seem to take into account the wheelchair was bouncing to the point Jerry's head would hit the ceiling he still was flying over the bumps in the road. The driver didn't understand english so Jerry just took it like a trooper and was just excited to be on an outing. We were very glad to see that the sidewalks were accessible for the wheelchair and for the most part they were in good shape, we were off to a good start. Once inside the palace gates we realized it was gonna be an uncomfortable bumpy day for Jerry, the palace and temple grounds were cobble stone. I'm thankful we had an opportunity to go, the palace and temple were very beautiful and a sight to behold but it wasn't very enjoyable for Jerry, we tried to take it slow over the bumpy road but it didn't help much. I have to say I'm so disappointed that one of the greatest points of interest in Thailand the Grand Place & Temple is not handicap friendly. There were only two buildings that allowed entry however not for Jerry because there were stairs and no ramps. The temple was stunning but again Jerry could not go inside because there was no wheelchair access. I left Jerry at the bottom of the stairs for 5 minutes so I could go inside to take pictures at least he could see it in the pics, I got a few pics of the outside and the camera died....go figure, I had charging issues again I'll mention later. We had only been at the palace about an hour and half before Jerry decided we should call the driver to come get us since it will take him an hour to get back. We decided to get off the bumpy cobblestone and cross the street and look for something to eat. We never found a place to eat so decided to be adventurous and eat fried pork on a stick from the street vendor, I figured deep frying has gotta kill anything that could make us sick. It was pretty tasty and we were safe, neither of us got sick. We had a good time walking the street shopping the street vendors, I could do that all day. It took the driver 3 hours to come back to get us, the weather was so hot, Jerry began to get a fever, his body absorbs heat but cannot release it because he doesn't sweat much. Thankfully the vendors did have cold water on ice, we went through several bottles but Jerry's temperature still spiked at 103.4 by the time the driver arrived. Once in the air conditioned van Jerry's temp began to come down and within 3 hours his temp was back to normal. I know it kind of sounds like the outing was a bit of a disaster, but I feel like it was more of an adventure, it was better than sitting in our room all day and honestly Jerry made the best of it, he was very irritable in the first 45 minutes but he decided to make the best of it and that's exactly what he did.

 

I mentioned a charging issue above, resolving it turned into another adventure. Jerry's wheelchair holds a charge for about 2 weeks, it's not been charged since our arrival but was beginning to get low. The wheelchair charger is not like the laptops, it cannot be plugged into the wall. I have the adapter that was on loan from the hospital, which worked fine for charging my camera/phone. I plugged the wheelchair into it on Saturday evening but it only handles up to 80 watts, I don't know how many watts the wheelchair is I couldn't find that info on the charger so I just went for it. I should have know it was not going to handle it, the adapter fried. Luckily the wheelchair had enough charge to get through our Sunday outing but I knew it would die within a few days so Monday was priority to go on a hunt for an adapter large enough to handle the wheelchair charger. Unfortunately since I fried the adapter I couldn't charge the camera for our outing but thankfully I got a few pictures before the camera died. Monday after therapies I got Jerry settled in bed with his computer, the cool thing is his skype works here so if he has a problem he could call me. I left Jerry in the care of the nurses and went out on a hunt for an adapter, I took the train to a mall called MBK, I've never seen anything like it. Seven stories of endless vendors, it was so overwhelming, it's vendors flea market style not like your local mall in the states so looking for a booth in this vast see of vendors that would have an adapter was like finding a needle in a haystack, how I managed to find one had to be divine intervention. The largest one I could find handles 200 watts, I'm still not certain it's large enough but it's working for now. I can charge the chair for about 40 minutes before the adapter over heats. Below are some pictures of MBK....





There is soooooo much cool stuff at this mall and really great prices but it is so overwhelming, I just had to look for what I came for and get the the heck out of there, my brain was on overload.

In a previous post I mentioned the construction going on right next to the hospital. There was an 18 story building they are tearing down, it's now 5 stories. It literally is less than 120 feet between the building and hospital. Yesterday the construction crew dropped something off the building and it hit the wall that separates the two buildings which is right next to the swimming pool below my room, it hit so hard it knocked down a barrier and planter box which landed in the pool. Therapies go on in this pool all day, there must be angels protecting because people had just gotten out of the pool when the big planter flew off the wall and into the pool. There was 1 woman in the pool but the planter missed her and she was not injured. The pool went black from the dirt and obviously aquatic therapies have been canceled for a few days. The pool was drained today and they expect to have it back in operation in a few days. The construction has been an on going legal battle with the construction company and hospital, all the patience are asked to file a complaint to add to their case.

Jerry is due for his second lumbar puncture in about an hour :)

Katie