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

Thursday - July 30

It's been a busy week and I'm looking forward to the weekend. Last Sunday I was in the emergency room with Janea all night. Dennis, Jessica and Janea volunteered at the Wharf to Wharf on Sunday, for those not familiar it's a 10K run in Santa Cruz. Janea started to feel dizzy about noon and by 2:00 she was vomiting. The strange thing is Janea felt fine all morning. Janea was so sick she couldn't hold anything down, by 8:30 pm her arms were trembling uncontrollably. I took here to emergency and they kept her all night, she was severely dehydrated and her blood pressure dropped scarily low 77 / 21. Three IV bags later her blood pressure was 80 / 50. They were concerned about releasing her but she was able to get up and walk around without getting dizzy and she was fully hydrated so they released her about 7 am. I was really tired because I didn't sleep at all and was sitting in the most uncomfortable chair all night. Janea slept all day Monday and is back to normal, I pray Jerry doesn't come down with it, it was awful. I managed to get about 5 hours sleep but was pretty wiped out on Monday.

Tuesday Jerry had his endoscopy, they didn't do the colonoscopy there was a misunderstanding on my part. The endoscopy went well, the results came back normal with a little bit of acid damage in the esophagus. The doctor thinks the ditropan Jerry takes for bladder spasms is relaxing the sphincter to the stomach so acid is backing up into the esophagus. The doc said that it could be what's causing the nausea so he put him on protonics. I don't think the acid is the nausea causer, he has been off and on protonics since he was in the hospital and it has never had an effect on the nausea. I'm going to request Jerry's doctor to order a stomach emptying study, I think he has a motility problem. We'll see. Jerry has felt pretty bad all week, however today he seemed a little better.

We had to cancel SCI-FIT on Wednesday because I had a doctor appointment. I have been having trouble hearing in my left ear for a few months now. The doctor put me on a steroid for two weeks to try and resolve the issue I'm having with my inner-ear. I had another hearing test and there was no improvement so the doc gave me a shot of steroid. The shot hurt, they poke the needle through the ear drum and inject the cream next to the inner ear membrane. After two weeks there is still no improvement to the hearing so at this point the doc has determined the hearing loss is permanent. I now have an appointment to be fitted for a hearing aid, how ridicules, I'm to young to loose my hearing.

Today Jerry had therapy at Dominican Rehab. Jerry did the FES hand bike. Every time Jerry does the FES hand bike he feels like he gains a little something back. After the FES session Jerry gained the ability to rotate his wrist slightly. This is new, until now he could only pick his arm up and let it fall but he cannot push it down or rotate it. Jerry also had a very slight movement in his thumb when he was trying to rotate his hand. The thumb movement is so small you could hardly see it, but it's there and it's exciting to have something new. I thank God for anything new because it keeps hope alive and renews motivation to keep working hard.

Jerry's friends from Florida are coming this weekend for another visit so I know Jerry is very excited about that. Tomorrow we are off to Pleasanton and then having a BBQ at our house for the summer staffers. Summer staff leaves on Saturday which is a bummer, Jerry very much enjoyed them dropping by for visits.

Well I think we've caught up and the dinner dishes are awaiting my presence so I will say good night.

Katie