Sunday - Aug 30

We would like to thank Sheri Ross for putting on a wonderful classical concert benefit for Jerry last night. Sheri you did a wonderful Job and you play the violin so beautifully. Thank you to all the wonderful musicians who participated in the concert we appreciate all the time you took to help our family. Thank you!

Yesterday we had a very scary experience with Jerry, just a reminder of how fragile he still is. Janea and I were getting Jerry into the standing frame in hines sight we should never attempt that when it's 96 degrees in the house. Generally Jerry's blood pressure drops when you stand him up, the trick is to get him up as quickly as possible and get his hands strapped to the handles and start the glider while someone pumps his calf and thigh muscles. Once you get the glider going his blood pressure comes back to normal and then it's just a matter keeping the glider going and pumping his legs every few minutes. When the blood pressure drops it can cause you to pass out, Jerry has a pass out scale of 1 to 4, when he reaches 1 he feels light headed and it's time to start pumping the legs. When Jerry reaches 2 he's a little dizzy, 3 he begins to get tunnel vision the beginning of blacking out and his hearing goes, at 4 he passes out. At level 1 and 2 we pump the legs and it brings him back to zero if he reaches a 3 we bring him down from standing to sitting and pump the stomach. If pumping the stomach does not elevate the blood pressure then we raise his legs. Janea and I got him up to standing and he was imediatly at one, Janea started to pump the legs as I had one hand on his chest to keep him from tilting and the other hand holding his two hands on the little table in front of his chest. Jerry went to a 2 so I wanted to get his hands strapped quickly and begin moving the glider that always brings his blood pressure back. Jerry never went to 3, before I even got one hand strapped he passed out. It was scary, because the normal pumping was not bringing him back and I was holding him up so could not push the lever to bring him down. I kept calling him and then started screaming "Jerry come back". I finally got the glidder down and had to unhook his legs and pull them up. He was out for almost a minute by the time we got his legs out of the glidder and elevated, it was so scary to see his eyes staring out but nothing was there, no response. At one point I paniced and slapped him to try and startle him to come back, he doesn't remember any of it. Another lesson learned, no standing frame when it's hot in the house the heat causes him to have blood pressure problems. Secondly don't panic just get the legs elevated as quickly as possible.

Dennis and Jessica are in Hayward yesterday and today, Jess had a softball tournament. They won the first two games yesterday and lost the third. Today they won the first game and could play up to two more games. Go Spin! I will spend the day catching up on chores after getting through Jerry's morning routine.

Have a peaceful day,
Katie

Saturday - Aug 29

Jerry had his first visit with Dr Zhu's acupuncture yesterday, the session was 4 hours, it was quite a new experience for him. Dr. Zhu inserted about 15 needles into the top of Jerry's head, for the first 45 minutes Jerry sat in his wheelchair tilted back and relaxed, he said it made him feel sleepy. The doc then had Jerry do arm and leg exercises, with the needles still in his head. Next the doc inserted about 20 needles into Jerry's shoulders and arms and he relaxed for another 30 minutes. Dr. Zhu removed the needles from the arms and shoulders and then a trainer did acupressure on Jerry's feet. The trainer would put pressure on certain spots which would make Jerry's legs jump, it was kind of weird. Jerry did a variety of other exercises which included upper body balance work, standing frame and a motorized pedal bike. For the most part I would have to say the exercise portion was a little weak, there was a lot of time in between exercise sessions and each session was very short, Jerry was bored. The acupuncture portion was very interesting, the doctor asked if Jerry had any pain, Jerry said yes in his shoulders. The doc twisted or moved a needle in Jerry's head and then asked again if Jerry had pain he said no. That was crazy twisting a needle in the top of the head removed the pain in his shoulders. Jerry also experienced sensation in his sides below his rib cage, he had a hard time describing what he felt. The doctor wanted Jerry to go home and leave the needles in his head until he went to bed. Jerry was not happy about that and asked the doc if he could remove the needles. The doctors English is not so good and his accent is so heavy there was a bit of a communication gap. The doctor took out half the needles but left 8 needles in, Jerry thought all the needles were out. We left and started loading Jerry in the car, his head brushed the top of van and he felt the needles, he was PO'ed. I think it was a mental thing about needles, he said they hurt but after the doc took out half he couldn't feel the others. Jerry reluctantly decided it would be OK to leave them in until bed but he wasn't happy about it. By 8:00 pm Jerry had decided he really couldn't feel the needles and it wasn't so bad leaving them in. We canceled SCI-FIT on all Fridays in September and are going to go to Dr. Zhu on Fridays. Dr. Zhu is very expensive and of course the insurance does not cover it. I think we will do the 4 hour sessions during Sept but for October maybe we will see about just going to Dr. Zhu to get the needles inserted and then do the exercise at home to cut down on cost. The exercise they did was nothing special and could easily be done at home.

Tonight is the classical concert benefit we are very excited about it, it should be a wonderful evening. I hope to see some of you locals there, come say hi.

katie

Tuesday - Aug 25

I can't believe school has started already, summer is over yet is seems like it just began. I feel sad that Jerry is not heading back to school like most of his friends. This is the time in his life when he should be getting excited about new roommates and classes, worrying about girls and books and what will his professors be like. My heart breaks that his life is consumed with therapy, medication, pain, nausea, fear that he'll never be able to move his arms or legs or walk again. Jerry is so strong and has faced this disability with such courage, he keeps fighting and working hard to regain mobility, I'm so proud of him.

We are thinking of adding another weapon to the therapy arsenal, acupuncture. There's a highly sought after doctor in San Jose who is world renowned in dealing with spinal cord injury and stroke. His therapy is not just acupuncture he also does intensive weight baring exercise. Dr. Zhu's philosophy is the patient should be in intensive exercise program 6 to 8 hours per day 5 to 7 days per week. That's just not feasible considering his cost however we are going to pursue one day a week and see if the doctor would be willing to work with Jerry.

We've been busy as usual, I spent all day Sunday clothes shopping with Jessica for back to school, man my feet and just about every other muscle in my body hurt. I hate getting old. Monday was hectic, Jerry had a massage appointment at noon, while he got his massage I took the babies (kittens) to the vet, Ricco was neutered, poor baby. I rushed home after the vet and had to get Jerry ready and loaded into the van. I had a hearing aid appointment at 3:30 and Jerry had a doctor appointment at 3:45, luckily they were in the same building. We left the doctors office about 4:45 and rushed to get to the photographers by 5:30 to pick up Jessica's senior photo proofs. By the end of the day I needed a massage but we managed to get it all done. It seems like everyday is full with Jerry doing therapy 4 days a week and keeping up with doctor appointments.

Dennis took Jerry to therapy today so I was able to get a few things done around home. It's so crazy keeping up with our schedule, I think it will get better when Dennis is done with the construction. Dennis is helping coach Jessica's softball team which isn't really good timing there's so much to get done around here to finish Jerry's bathroom. However it's Jessica's senior year and we can't neglect her because we're busy, we just make it work and do the best we can. What gets neglected are the dishes and laundry, oh well I hate those anyway.

Simone I loved your comment that you started running again and that thinking about Jerry keeps you motivated. Awesome job completing the "Race Through the Redwoods", you go girl!

We are so appreciative to Sheri Ross for putting together a classical concert to benefit Jerry. Sheri you are AWESOME, thanks for all your hard work. I hope some of you locals will be able to make the concert, we're excited and it should be a wonderful evening. For more info check out the top of the green box on the right.

I feel like my thoughts have been all over the place in this post.

Tuesday - Aug 18

Thank you to all of you who are following Jerry's progress though the blog. Whether you know Jerry or us or not doesn't matter. It's comforting to know we are not alone in this and that people care and are continuing to pray for his recovery and well being. We very much enjoy reading your prayers or well wishes, thoughts and comments. Thanks for hanging with us.

Today was a little rough, Jerry had nausea pretty bad today and it wasn't getting any better in the afternoon. We left the house about 12:30 headed for Dominican rehab. It was about 85 degrees when we left the house and Jerry was dressed appropriately. We arrived in Santa Cruz to find it was about 65 degrees and breezy. Jerry got cold and of course I wasn't prepared with a coat. When we got into the gym the AC was on and Jerry started shivering. The therapist got him 3 very warm blankets from the warmer however he just couldn't seem to get warm. Jerry had an issue which I won't go into but it made him feel bad. To top off the day I accidentally pinched Jerry's neck in the chin drive buckle, that was pretty much the last straw. Jerry was not having a good day and I was not making things any better which made me feel like poo.

Jerry did not get to do the standing frame yesterday because Dennis didn't get home with it until after 8 pm and we had to read the manual and figure the thing out first. Jerry wanted to get into the standing frame after PT today but felt to sick. I was so happy when he finally felt good enough to give it a go which actually was about 9:00 pm a very late start. We had to put Jerry in the standing frame then make some adjustments then take him out and adjust the seat them put him back in and make more adjustments. By the time we actually got him standing his blood pressure was dropping. All in all Jerry was in the standing frame about 45 minutes however he was only standing about 15 minutes. Tomorrow will be better because we have it all adjusted now to fit him so we wont have to spend all that time making adjustments. I leave you with the picture of Jerry standing.

much love
katie

Monday - Aug 17

Thank you all for the prayers for Jerry weaning off three of his meds, we have been successful with two of them. The third med he's going to have stay on, the weaning did not go so well with that one.

Today is an exciting day, we are getting Jerry's standing frame at 5:00 pm, whoohoo! .....by 7:00 Jerry should be standing. Having a standing frame in the house means Jerry can stand everyday. The hope is that by standing his blood pressure will stabilize, no more sudden drops from sitting up right. Jerry has to wear compression socks that go all the way up the thighs as well as an abdominal binder that is like a corset. The hope is that by standing everyday we will be able to get rid of the socks and binder. The standing frame has so many benefits, here are some of them:

• improved range of motion
  
• Decreased joint & muscle contractors
  
• Decreased pressure issues with changing positions
  
• Improved circulatory & respiratory functions
  
• Decrease muscle spasms
  
• Assist with normal skeletal development
  
• Improved bowel function & regularity
  
• Improved kidney & bladder functions
  
• Lessen or prevent progressive scoliosis
  
• Help maintain bone integrity

On a different topic, I'm flabbergasted at how thoughtless, rude and selfish some people can be. Jerry went to the movie with some of his buds over the weekend and the story he told when he got home floored me. They arrived at the movie 10 minutes early only to find that two non handicap people were sitting in the handicap reserved seating. Mind you these are not the greatest seats in the house the are all the way in the back of the theater. There were plenty of seating available, in fact better seating was available two rows up from the handicap section, the whole row was empty. The kids asked politely if the two wouldn't mind giving up the seats as they were the only handicap seating available. These two who were in their early to mid twenties and should have a little more courtesy as adults said "NO, we're not moving". The kids explained the seats were reserved for handicap and they were not handicap and they needed to move. Still "NO". Issac informed them at that point if they would not move he would get the manager, the response was go ahead and get the manager. These two people argued with the manager as to why they should not have to move however the manager was insistent. The couple insisted if they had to move they wanted their money back, so the manager gave their money back and they left the theater. UNBELIEVABLE!!!

Jerry has a dentist appointment today so I will rap it up for now. I'll try to post pictures of Jerry in the standing frame tonight.

Much love,
Katie

Classical Concert Benefit

Sheri Ross is putting on a classical concert fund raiser to help offset the cost of Jerry's therapy at SCI-FIT. This will be an enjoyable evening for all ages.  Sheri will be playing Mozart and Bach with pianist Laura Swanson.  Aude Castagna, and others will be performing. Featuring string and piano works by Bach, Mozart Beethoven, Handel and more! If you would like to help Sheri organize or promote this concert please contact her at shero777@yahoo.com or you can also send me an email at katie@followingjerry.com.

Location: Erica Shilling Forum (Bldg. 400) at the Cabrillo College Campus: 6500 Soquel Drive, Aptos, CA.  95003

Date:  Saturday, August 29, 2009

Time:  7:00 PM

Suggested Donation: $10 at entry

Monday - Aug 10

The last two nights Jerry has slept in his own room. I think he's pretty glad that he doesn't have to listen to me snore, he slept well and likes the new room. I miss our bed time chats or laying in bed laghing about something silly the kitties did, but I do love having my bed back. Dennis is really appreciating not sleeping on the couch. Here's a sneak peak of Jer's room, Dennis and Jessica laying the floor. I'm not done decorating but when I am I'll post more pictures.


Tomorrow we are at Dominican rehab, it will be nice to get back to the routine after taking last week off. I don't have much new news other than we are in the process of weaning Jerry off of 3 of his medications. Please keep him in your prayers that the transition will be successful and these medications can be eliminated.

Thanks
Katie

Quick Update

Just a quick update to say Jerry will be sleeping in his own room tonight. To be honest it will be a little sad for me as we have slept in the same room for the last 6 months. I've enjoyed our bed time chats and playing with the kitties before we doze off.

Dennis got Jerry's room done so I moved all his stuff in today, tonight will be his first night alone. Well sort of alone, I did get a baby monitor, I need to be able to hear him in case there's a problem in the night. It will be strange sleeping in my king bed tonight, I know Dennis will be thrilled to be off the couch and in a real bed. I still need to decorate Jerry's room but everything but the cabinets are done. Now it's time to get the bathroom and the Air Conditioning done. :-D

A bit of good news we have been dealing with a paper nightmare trying to get a standing frame for Jer and we just found out 2 days ago that it has been approved. The standing frame has been ordered and should be in our home within the next 3 weeks, whoohoo.

More tomorrow.....

Katie

Thursday - Aug 7

I apologize, I've been neglecting the followingjerry community and I know some of you worry when you don't see a post for awhile. Everything is going well it's just been busy, by the time I have free time to post it's late at night and I usually opt for bed.

Things are starting to fall into place. For months now I've been feeling like everything is going to be better when Jerry receives all his equipment ...when Jerry gets into his new room ...when Jerry's nausea goes away. Prayers have been answered, Jerry is struggling less and less with the nausea. I wouldn't say the nausea is completely gone but it's at a much more tolerable level and he does have extended periods of time when he's not nauseous. Jerry does have a bad nausea day on occasion but it's getting better.

Jerry had two appointments on Monday, one with his doctor and the other with his dentist. The dentist was great about accommodating Jerry. We didn't have to transfer into the dentist chair, she moved the chair out to make space for the wheelchair and she worked on Jerry standing up. Both appointments went well.

Jerry's friends from Florida came for another visit and brought their mom along this time. We canceled PT and OT on Tuesday and SCI-FIT on Wednesday so Jerry could spend some time with them. Tuesday we went to Henry Cowell State Park, for those not familiar with the park you can check it out here, the girls loved the redwoods and were amazed at the beauty of it all. It's nice that Jerry was able to do the hike, the trail is flat and smooth and the wheelchair handled it just fine. We left Henry Cowell and headed for the Board Walk in Santa Cruz. We walked the board walk and I gotta say it's a little different experience with a wheel chair. There were so many people, it was a little challenging for Jerry to manuever through the crowd. Wednesday we drove to San Francisco, I was a little surprised they didn't have better handicap parking accomodations. I guess I shouldn't have been surprised, parking is horrible for non hadicap vehicles as well. It took us about 45 minutes to find a parking spot, our van was too tall to go into the parking garage which surprised me. The lot at the end of the wharf was full and didn't even have one handicap spot. There was a wharehouse to park in on the pier which only had three handicap spots, of course they were taken. We were allowed to park in a non parking spot which would accomodate us dropping the lift so it worked out. We had a wonderful time in Frisco, we had crepes on pier 39 as well as clam chowder and Ghridelli Chocolate, mmmmm sooo good. The girls were amazed at the hills in frisco, they are so steep and long, we drove up Hyde Street and down Lombard Street (America's crookedest street). There are a lot of tourist standing at the bottom of Lombard Street watching the cars come down. It was kind of funny, the tourists at the bottom of the hill were amazed to see such a big van come down that windy, narrow street, when we reached the bottom the whole crowd cheered and applauded, we kinda felt like celebrities. I'm not gonna lie, it was a little scary when we first started down the hill, the pictures don't do it justice to show how steep it is. I havn't put the brakes through that rigorious of a test, I was hoping they would hold out, we survived.

Thursday the girls went to Santa Cruz with Jessica while Jerry and I went to Dominican Rehab. We had to exchange our FES hand bike appointment for an appointment to pick up and adjust Jerry's permanent power wheel chair. We were bummed for sure for missing the hand bike, it seems like every time Jerry rides the hand bike he gets a little stronger. We were excited on the other hand to get Jerry's permant power chair. Jerry was pretty thrilled with the chair and says he feels so much more comfortable in the chair. The chair was custom made to fit his body and he can really feel the difference. We spent 2 1/2 hours making adjustments to the chair and didn't finish so we have another appointment next week to finish. The chair has some really cool features the other chair didn't have like electric foot rest. The chair also has tilt and recline before he only had tilt, there are some other cool features as well.

Today we are off to SCI-FIT so I will rap it up as I still have to finish getting Jerry ready and out the door in the next 15 minutes, yikes. I'll leave you with a couple pictures of Jer in his new chair.....



Katie