Merry Christmas!

We hope everyone has a wonderful holiday! It's easy to get caught up in the hustle and bustle of the season, remember to stop and give thanks to God, appreciate your loved ones and don't take life for granted.  We never stop to think about the things in life that make our life manageable until it's gone, only then do we realize how precious and fragile life is. I'm guilty, I never gave much thought to the things that make my life easy, the ability to walk, take a 5 minute shower, scratch my head when it itches, feed myself, bend my fingers to grip something, write or type, turn my body over in bed to relieve pressure from being in one position for too long, driving and on and on; until my son was no longer able to do these things. I appreciate now all these things that I'm capable of just to be functional through the day but I would give it all up in a heartbeat if I could give Jerry these gifts.  I still pray God will heal Jerry and restore him to health, I will never give up hope that he will again be able to do the simple things in life that make life easier. 

We have a family tradition of delivering homemade cookies to all our friends on Christmas eve. Our family loads in the car and drives to deliver to about 25 homes in the valley. This year started out great we decided to take the suburban so Jerry could sit in a regular seat in the car instead of his wheelchair.  Jerry felt good when we loaded him in the car but by the time we hit the 6th house he was very nauseous, and couldn't go on.  Dennis dropped Jerry and I at home and then continued on delivering cookies, I hope you recipients enjoy the tasty treats.

My family came to visit for about a week and we celebrated Christmas a week early. It's the first time in several years that we had most of the family together, I enjoyed it very much.  There was about 20 of us, my house is not that big but we managed to all find places to sit and visit.  We missed you Mark and Brandon, Robert & Phil, Dave, Vince & Rena. I'm planning a summer family camp out so mark you calendars now.  Having already made the big Christmas dinner last week, I've decided tomorrow I'm not doing anything but enjoying the family, so Chinese food it is, another first. 

Well good news, the followingJerry t-shirts are done.  I picked them up a few weeks ago and so wanted to get them on the website before Christmas.  With preparing for the family to come, having them here a week, getting all my Christmas shopping done, wrapping etc. I either didn't have time or was too exhausted to get the shirts posted.  It certainly has been a whirlwind of a December, needless to say the t-shirts are now available.  We have blue shirts with white lettering and white shirts with blue lettering for sale $18, the proceeds will go in Jerry's China fund for stem cell therapy. You can click the link on the right side for more info or to place an order. 

Merry Christmas to all!

Katie

I hope you all had a wonderful Thanksgiving, ours was great.  Josh came home from San Diego it was so nice having him home.  I got most of my cooking done on Wednesday evening so we spent much of the day relaxing and watching football, I even got do my cross stitch.  It was a very quiet and peaceful day.  

 

Not much has changed since my last post, Jerry still struggles with nausea on a daily basis. He's lonely and some days the sadness is overwhelming. The great thing about holidays is Jerry's friends come home from college.  The boys took Jerry to the movie to see the new Harry Potter movie, he enjoyed that very much and Issac dropped by to visit for a couple of hours. It helps to distract him if only for a short period.  A friend of ours Rob gave Dennis and Jerry San Jose Sharks tickets, so the boys got out of the house and had a great evening watching hockey on Tuesday, it was a bummer the sharks lost but the boys had a good time none the less. Thanks Rob!

 

Good news the t-shirts are in production and should be ready for sale soon.  Jim from Sports Embroidery Center has done an awesome job designing the shirt and has given us a sneak peak, (see image below).  We will have the blue shirts with white lettering as well as white shirts with blue lettering.  The image below is the back of the shirt, the front of the shirt has a smaller logo over the pocket area and Jeremiah 30:17 on the sleeve, the shirts will be sold for $18.  I was nervous about investing too much money and not being able to sale all the shirts so I only have 100 shirts, 50 of each color which breaks down to about 10 shirts per size.  So if you know you will be ordering shirts you may want to do it earlier rather than later to ensure we don't run out of your size. You can pre order shirts if you like by sending a check to the address below, please be sure to include: how many shirts your ordering, size, color, ship to address and phone number in case there's questions.

It's time to get Jerry ready for SCI-FIT, thanks for the prayers, love and support.

Katie

162 McPheeters Cir

Boulder Creek CA 95006

A Night Out

Dennis and I were able to get a much needed break last night and spent the evening out.  We went to see The Pat Travers Band at the Brookdale lodge, they put on a great show.  PT was one of Dennis' favorite artists, he saw him sometime around 1982 so he was excited to be able to see him again in such a small venue.  The base player wore a followingjerry bracelet for a portion of the show and I slipped a bracelet on Pat Travers wrist at the end of the show.  It would be kinda cool to have someone famous join the following Jerry community.  Maybe they would be willing to do a benefit concert to help raise money for Jerry's trip to China for stem cell therapy, that would be SWEET!!!

Jerry had a rough day today, his nausea was at its all time worst and he spent the majority of the day sleeping, he seems to be feeling better this evening.  We are watching the football games that we tapped earlier today, Jerry and I are going head to head in our fantasy football league. I think he might kick my butt.

A few days ago Jerry tried to use his adaptive utensils to feed himself, we discovered it's to soon, he was not able to scoop food onto his spoon.  I look forward to the day when he can feed himself, I think he will get there it's just going to take some time. 

I've finally got around to ordering t-shirts, I'm excited, I think they are going to be really cool.  We decided to do blue shirts with white lettering like the bracelet as well as white shirts with blue lettering.  I will get pictures on the site just as soon as the shirts come in. 

Thanks for keeping Jerry in your thoughts and prayers.

God bless,

Katie

Getting Stronger

The FES bike has been very beneficial for Jerry but like most kids his age he'd rather be doing something else besides working out.  I can't blame him for that matter, heck I feel guilty, he works out more than I do and I have no excuse.  I'm so proud of Jerry and how hard he works. The video below is Jerry doing the FES arm cycle, just ignore the stack of pillows on the unmade bed ;-), I guess I should have cleaned his room a bit before shooting a video.

Jerry's arms continue to get stronger, his left arm has been more dominant in the past however the right arm is starting to catch up. A few nights ago Jerry wanted a candy bar, I'm on a diet and that's a little torturous to have a candy bar in my hand and not take a bite. I decided if Jerry wanted the candy bar he was going to have to feed it to himself, I was halfway messing with him I would have fed it to him if he could not. I put the candy  bar between his fingers and  much to my surprise he managed to lift it and take a bite.  I was so excited I made him wait to eat the rest while I grabbed the camera.  As you can see by the expression on his face in the video below he hates it when I take pictures and video especially when eating.  I know he hates it now but it's important to capture these milestones so when he looks back he can see how far he has come.  This was way to huge not to share with you all.  

With the discovery that Jerry could feed himself the candy bar the thought came to me that maybe it's time to get adaptive utensils and begin to try feeding himself his meals.  I purchased the utensils online and I gotta say once again I'm appalled at how the handicapped are taken advantage of, it's sickening. 1 plate, 1 fork, 1 spoon and 1 cup, plastic, nothing that special, $70. Unbelievable!

The plate has rubber tabs on the bottom so it won't slide, it also has a rim all around it so the food cannot be scooped off the edge. The fork or spoon can be strapped to the hand and is bendable to angle it the way Jerry needs it.  You never stop to think how many muscles are used for the simple task of feeding yourself.  Jerry has one muscle working for him, the bicep, he can bend at the elbow to lift his forearm but cannot lift the arm from the elbow to the shoulder.   Jerry doesn't have any wrist or hand control or wrist rotation.  Feeding himself may still be to early and be more of a frustration then he can handle right now but he'll never know until he tries.

God bless,

Katie

Back to Normal

Things are finally getting back to normal in our house after a hellish six weeks, Jerry has almost recovered fully and is feeling a little more like his old self.  It's going to take some time for Jerry to gain what he's lost over the last six weeks, his muscles have lost some tone, his tolerance for being in his wheelchair has gone way down, his blood pressure drops more now then ever and the FES bike causes his heart to race after 10 minutes.  These are disappointing set backs that should improve over time.  The good news is Jerry started back at SCI-FIT this week getting the much needed workouts with an amazing crew, it's good to be back but I'm still hating the drive. More good news, Jerry's right arm is getting stronger, he can move his right arm as much as his left arm now, the only difference is the right arm fatigues quicker.   

That's all for now, I have to get Jerry ready, it's a SCI-FIT day.

God Bless!

Katie

T-Shirts Anyone?

We are brainstorming ideas of ways to generate more money for China and thought t-shirts might be good.  Before we go and put out a lot of money to have shirts made we thought we would poll you all to determine if there's an interest.  The t-shirts would be $20 which includes shipping and would have the logo on the front breast and maybe the website in the back bottom as seen below.  If you think you would purchase a t-shirt could your leave a comment answering the questions below.  Answering the questions does not commit you to purchasing, it will help us determine if there's enough interest to proceed as well as what colors and sizes.

1. Would you be interested in purchasing a t-shirt?
2. What color t-shirt?
3. What color logo?
4. What size would you order?
5. Do you have an interest in designing the t-shirt?

Home At Last

The ultrasound came back normal which is good news, the chest x-ray taken this morning shows no increase in fluid in the lung, more good news.  The doctors can not conclusively say the pulmonary embolism was a false positive so they will be treating Jerry with the blood thinner coumadin for another 3 months to be on the safe side. The best news of all we are home at last, hallelujah.
 
Jerry spent about 3 hours in his wheelchair today, he also attempted to ride the FES bike but was only able to tolerate about 10 minutes.  It's difficult for him to sit straight up he still has fluid in the pleura which makes it difficult for him to breath, he can't tolerate being upright for more then 10 to 15 minutes.  While we were in the hospital Dennis installed the ceiling lift over the bath tub.  After a much needed shave Jerry was able to relax in the jacuzzi tub for about an hour.  It was so nice being able to get Jerry in the tub by myself with very little physical exertion.  Jerry is a happy camper resting in his own bed, watching football.  

Good to be home!

Katie

Diagnosis Confusion....

The situation with Jerry is getting a bit confusing, as much as I like the doctors I have to wonder if they're qualified to solve this puzzle.  We have 3 pulmonologists, 1 neuro specialist, and 1 hospitalist on the case all of which are scratching their heads, saying nothing about Jerry's case is textbook. Their diagnosis is just not adding up and they're beginning to question themselves with regards to the diagnosis that they've made thus far.  Two of the doctors have explained to me how they came to the conclusion of a pulmonary embolism, all of which is very detailed but made sense why they would come to the conclusion of PE. I don't have the energy to write it all up, the bottom line is now the doctors are thinking the original diagnosis of PE and the diagnosis of lung infarct may be wrong, it may actually have just been a pneumonia all along.  They want to run a series of tests to try and determine weather or not Jerry actually had an embolism so they can determine weather or not he needs to continue taking coumadin. This is all kinda good news bad news, the bad news being misdiagnosed causing worry and stress and Jerry taking a dangerous drug unnecessarily, the good news being pneumonia is a much less serious diagnoses and recovery then pulmonary embolism and lung infarct. So here we are in the waiting game, waiting for them to come up with an accurate diagnosis.

Jerry had another chest x-ray yesterday which showed no change in regards to the amount of fluid present in the pleura, this is good news he's not continuing to build fluid. Jerry is scheduled for another chest x-ray on Sunday and possibly an ultrasound of his arms, legs and heart today.  That's all for now, we'll keep you posted.

xoxoxo

Katie

Update

It looks like we will be staying for awhile at Dominican. Jerry had a chest x-ray this morning at 6am, a little early for us late risers. The x-ray shows the pleural effusion is again taking on fluid in addition the pulmonologist now believes that the lung infarct was not an infarct at all because an infarct would not cause so much fluid.  The doctor believes that what they thought to be an infarct is actually a pneumonia. The plan is to do another chest x-ray tomorrow, if the fluid increases again then the doctor will do another thorasentesis (remove the fluid) with the assist of an ultrasound.  The ultrasound will assist the doc in finding the precise spot to insert the drain.

If you've been following along with what's been going on then you should be familiar with Jerry's INR.  If you remember the INR should be between 2 and 3, however last week the INR was 4.6.  This means that Jerry's dosage of coumadin was way to high.  Jerry was taken off the coumaden to bring the INR down and now his INR level is 1.7, so starts the process over of finding the right medication dosage for him.  Jerry goes back on coumadin today and won't be released until his INR level is between 2 & 3.  Between the INR and monitoring the activity in the lung we are expected to be here at least through Sunday.  :(

I'll keep you posted,

Katie

Back in the Hospital

We're back to our tiny little closet, sure haven't missed it, by that sarcasm I mean Jerry was admitted back into Dominican Hospital.  We'll start with the good news the MRI results showed no evidence of a Syrinx, thanks for all the prayers.

Monday started with getting Jerry through the morning routine and ready to go to Santa Cruz for the MRI.  The weekend was hard for Jerry his pain increasing and not being managed so well with the pain medication.  Jerry was having a difficult time sitting upright for more than 2 minutes, he couldn't breath and was close to passing out when he tried.  After getting through the MRI we headed to see Jerry's doctor who was able to ease our mind with regards to the syrinx but it was a rather upsetting visit.  While viewing the MRI with the doc we were able to see the damaged area of Jerry's spinal cord.  I was shocked to see the difference in size between the healthy cord and the damaged cord.  The doc explained that the spinal cord atrophied just like muscles can atrophy, I didn't know that could happen and seeing it on film was rather shocking.  I couldn't contain the tears as hard as I tried, even writing this the tears return. It's gonna take a miracle, so please keep Jerry in your prayers.

Jerry's doctor was concerned so he sent us to the lab for some blood tests and on to Radiology for another chest x-ray.  The chest x-ray taken Monday was significantly different form the x-ray taken 4 days prior so Jerry was admitted once again to the hospital.  The x-ray showed a significant amount of fluid in Jerry's right lung the lung that had the embolism.  The official diagnosis is "Pleural Effusion" you can click on that for the clinical definition. The simple definition of pleural effusion is an accumulation of fluid between the layers of tissue that line the lungs and chest cavity.  Thoracentesis is the procedure the pulmonologist used to remove the fluid from Jerry today.  I was able to be present for the procedure and I gotta say that needle was gnarly. I was astounded with the amount of fluid they drew out, 1 1/2 liters and they didn't even get all of it. Another chest x-ray was performed directly following the thoracentesis which showed some fluid remains.  My understanding is they will do another chest x-ray in a couple days to determine if the fluid is building again.
The cause of the pleural effusion is yet to be determined however the pulmonologist believes the lung infarct developed an infection.  The good news is Jerry feels so much better with minimal pain after the removal of the fluid.

So here we are again anxiously awaiting to go home, desperate to get Jerry back to health, we are hoping to be released by Thursday. 

Thank you everyone for keeping Jerry in your prayers, we appreciate the support and warm wishes.

Love to all,

Katie

Somethings Not Right

 We were so ready to be released from the hospital on Friday last week, some nurses were great, others not so much.  The room was about the size of a utility closet, the hospital didn't have adequate supplies for Jerry's care, which had to be brought in from home. It's just so much easier to care for him at home so it was a blessing when he was released or so we thought.  Jerry has not been doing so well since diagnosed with PE (Pulmonary Embolism), his pain is not being managed so well at home.  The first four days at home Jerry did well, he had to double up on pain meds but for the most part he felt comfortable as long as he was taking his meds. Tuesdays blood test showed Jerry's INR level to be at 4.6, if you remember it's supposed to be between 2 and 3.  Jerry was taken off the blood thinning medication Coumadin for a few days until his INR drops back into range. Wednesday things started to go down hill with pain management and difficulty taking deep breaths, by Wednesday night a fever set in.  After consulting with Jerry's doctor Wednesday night we were instructed to be at the hospital in the morning for a series of tests which included a chest x-ray, x-rays of both shoulders and an MRI of his C-Spine. Unfortunately the MRI machine was broke so we will be getting the MRI on Monday, the shoulder x-rays came back normal however the chest x-ray shows a "lung infarct", you can click that for a clinical definition.  A lung infarct basically means that the lung tissue that the clot attached itself to died from lack of oxygen and blood flow. The doctor believes that the pain in Jerry's right arm and shoulder are a result of the clot and infarct however he wants an MRI to rule out a "Syrinx". In layman's terms a syrinx is a cavity that develops in the spinal cord and has spinal fluid filter through it. The syrinx can expand and put pressure on nerves or damage the spinal cord. Jerry's symptoms are consistent with a syrinx, I pray that it's not, I want to get to the bottom of the problem but I don't want it to be serious. If we cannot manage Jerry's pain at home then his doctor is going to admit him back to the hospital and we so don't want to do that.  Jerry's been in bed for two days with limited activity to avoid a flare up in the pain, sitting in his wheel chair only intensifies the pain.  It's sort of a catch 22, being idle in bed makes him feel a little better but puts him at a higher risk of pneumonia.

On a positive note Jerry was able to use the new FES bike three times since he got home from the hospital last Friday.  I'm excited for Jerry to be able to get into a normal routine using the FES bike, we just need to get him healthy first.

I feel a little sad, missing my son Josh, he moved to San Diego on Tuesday.  Josh will be attending UCSD to work on his masters for civil engineering.  I'm very proud of him but will miss him all the same.  Dennis left on Tuesday for San Diego to help Josh move and didn't get home until late Friday night. It was a little rough not having much help with Jer especially when the power went out Thursday morning at 3 am.  Jerry has an alternating air pressure mattress which requires electricity, without it the mattress is as flat as a pancake.  I waited a few minutes hoping the power would come back on but decided I had to get Jerry off that mattress, so I loaded him in the Hoyer lift and transported him into my bed. Just as soon as I got Jerry settled in my bed the power came back on and seeing as how Jerry was not to thrilled about sleeping in my bed and would be more comfortable in his own bed, I loaded him back in the Hoyer and transported him back to his own bed.  Needless to say I think I got about 4 hours of very broken up sleep, I'm still feeling a little tired. It's good to have Big D home.

That's all for now, I'll keep you posted about the MRI and doctor appointment on Monday.

Oh by the way, great news we are now close to raising $8,000 for the China fund. I added an image so you can watch the thermometer climb on the top right corner. 


God Bless!

Katie   

A Great Day At The Ballgame With The San Jose Giants

We had such a blast on Sunday, for those of you who went to the San Jose Giants game, you all ready know it was a great game and a wonderful time all together. The only thing that would have made the day better is the Giants winning the game. For those not able to make it, the Giants lost to the Modesto Nuts 3-2. I'm so thankful that Jerry was out of the hospital and felt well enough to make it to the game. The day was absolutely wonderful, it was great to see so many of our friends come out to support Jerry as well as many familiar faces from our community. One mentionable highlight was seeing Jack's followingJerry.com sign on the big screen when the camera man panned the audience, that was sweet.  Thanks to all who purchased tickets and made donations, the support from friends, family and community helped to make this a successful fundraiser, the estimated profit is $2,800. Great job everyone!

I want to thank the following people for busting their booty to sale tickets: Claudine, Gretchen, Jack, Dana, Trish, Leanne, Marci, Rob, Cindy, Neal, Mike, Debbie C, Josh&Janea. Also a BIG THANKS to Cycle Sport, Video 9 and Stanford Ave Automotive for providing a public place to purchase tickets.  We hope to see you all next year at the 3rd Annual Following Jerry to the Ballgame.

Much love,

Katie Mac

Game Day, Go Giants!

I'm so ready for a day of fun in the sun enjoying great baseball at the San Jose Giants Stadium.  For all you who have not gotten your tickets yet it's not too late.  You can still order online until 2:00pm today and pick up your tickets at the box office will-call.  If you are local, Video9 in Boulder Creek and Cycle Sport in Scotts Valley still have tickets available.  Tickets purchased at the box office today do not benefit Jerry.  

If you were one of the many friends helping to sale tickets you can bring the proceeds to the park, I will be around the picnic tables on the first base side.  The stadium stands don't have wheelchair access so unfortunately we won't be able to sit in the stands with everyone.  Anyone wanting to say hello feel free to come visit us on the first base side of the stands at the picnic tables along the fence line. 

See y'all there, GO GIANTS!!

Katie

Quick Update / Ballgame

Wow, what a week. Great news Jerry was released from the hospital yesterday about 5:00 pm, home at last.  We have such a busy day ahead.  As most of you know we purchased an FES bike for  Jerry, we are so excited to get it up and running.  We've had an appointment scheduled for a few weeks for a technician to come today to do the set up on the bike.  I had to jump through several hoops yesterday to be sure that Jerry had a doctors release to ride the bike given his current condition with the blood clot.  It was quite an effort to avoid losing our appointment with the technician.  All went well and the technician was able to fly here to do the set up.  The technician was here until 4:00 pm and Jerry was only able to tolerate about 15 minutes on legs and a few minutes on arms.  It might take him some time to feel up to par, he's still not feeling well. It may take him about a week before he is feeling well enough to begin a daily bike routine. We are very excited to finally have this piece of equipment.

On to the ballgame, anyone who purchased tickets on or before Thursday will receive the tickets in the mail, please note that an extra set of tickets will be held at will-call for you in the event you don't receive them.  Anyone who purchased tickets past Thursday can pick up your tickets in will-call at the ticket booth. 

It's not to late to get tickets you can still get tickets at the following locations:

Cycle Sport
245 Mount Hermon Road, Scotts Valley

Video 9
12550 Hwy 9, Boulder Creek

Stanford Automotive
110 Stanford Ave, Santa Cruz

You can also send an email to katie@ihwy.com if you would like to make alternative arrangements to get tickets. 

See You There, Go Giants!!

Whoohooo for 2

Jerry's INR level reached 2 today so if everything goes well he will be released Saturday morning. 
Thanks for praying!

Katie

AAARRRRRGGG!!!!!!!!

1.8


I'm getting cranky....


k.

Not Today

I can't believe we are still here in the hospital, it's time to go home.  We are now looking at hopefully being released by Friday. Jerry's INR level needs to be between 2 and 3, yesterday his INR was 1.5, today 1.6 at this rate we're never getting out of here.  OK that's an exaggeration obviously, it just seems to be taking way to long to get the INR level up.  Pray for 2 tomorrow.

Good night,

Katie

Ballgame Update

I hope to see you all at the San Jose Giants vs. Modesto Nuts ballgame to benefit Jerry's therapy.  Just a quick reminder the game is this Sunday Aug 15th.  Tickets purchased at the box office will NOT benefit Jerry's assistance fund.  To benefit Jerry's assistance fund you can purchase your tickets online through this blog.  Tickets purchased online by Wednesday will be mailed, tickets purchased online after Wednesday can be picked up at will call at the stadium.  You can also pick up your tickets at the following locations:

Cycle Sport
245 Mount Hermon Road, Scotts Valley

Video 9
12550 Hwy 9, Boulder Creek

Stanford Automotive
110 Stanford Ave, Santa Cruz

You can also send an email to katie@ihwy.com if you would like to make alternative arrangements to get your tickets. 

See you all there, GO GIANTS!!!!

Katie

Out of ICU

Jerry was moved out of ICU today up to the second floor, whoohoo, next move home.  Jerry has to be on a blood thinner for at least 6 months, he will be released from the hospital when his INR (International Normalized Ratio) is within a specified range.  Jerry's INR has to be stable for 2 days before they will release him, the simplified version of that means they have to be sure his blood is not to thick or to thin. Blood is drawn every morning to check Jerry's INR level and if it's not in the range it needs to be they adjust the dosage of his blood thinner. As of yet Jerry's INR is not where it needs to be, once they get it where they want it he has to stay at the hospital another two days to be monitored.  So if today's blood test shows Jerry's INR levels where they need to be then we get to come home on Tuesday. That's the update for the day, I'm headed back to the hospital.

xoxoxo
Katie

Good News / Bad News

I'll start with the bad news, it looks like Jerry has developed a small case of pneumonia in the lung that has the clots, he's being treated for it and they don't expect that it will get any worse.  The good news is it hasn't affected his breathing and it's not causing him any discomfort.  There's more good news, they're ready to move Jerry out of ICU, and more slightly less bad news, they have no where to move him to, at this point there are no available beds.  So we may or may not be moving out of ICU dependent upon the bed availability, the comforting factor is he no longer needs to be in ICU.  That's the update of the day we'll keep you posted if theres any changes.

Much love going out to y'all,

Katie

Quick Update

Thanks to all for the prayers and warm wishes of healing for Jerry.  I'm home for a short break, checking messages, returning calls as well as a much needed shower.  OK don't say yuck but yeah I've been in the same clothes and haven't had a shower since Jerry was admitted to ICU on Wednesday, I think I just heard someone say eewww, yeah that's about how it felt.  Any how, Jerry was admitted for a Pulmonary Embolism which is a fancy way of saying blood clots in the lungs. After speaking with his doctor this afternoon turns out Jerry had several small clots pass through his heart and distributed into his right lung. That's the bad news, the good news is now that the clots are in the lungs that's where they'll stay until they're dissolved with blood thinners. My understanding is the clots can't leave the lungs to reak havoc elsewhere.  It may take several weeks for the clots to fully dissolve however we are expecting that Jerry should be able to come home by Monday.  Jerry was in a great deal of pain and had moments of difficult breathing however I think they've finally found the right combo of meds to make him comfortable and he only had to be on oxygen for less then a day.  Jerry seems to be feeling a lot better and is a little more like himself, he even smiled a few times and was cuttin up on me.  I'll take a little razzing any day of the week, it kinda lets me know he's doing OK.  :-D
I better get back to the hospital and give Dennis a break.

Thanks again for the love and support,
xoxoxo
Katie Mac

P.S. We fully plan on Jerry being well enough for the SJ Giants game.  You can still order tickets online, don't panic if you don't get them in the mail right away. I promise as soon as Jerry's home I'll get the tickets in the mail.  See y'all there, Go Giants!!!

Friday Afternoon

Just talked with Dennis and here is the update.....

Jerry has been struggling with a lot of pain today, but his fever has subsided for now--which is great.   He is resting and taking it really easy, and is pretty much just waiting for the symptoms to subside and his body to fight things off.

Thanks for keeping him in your thoughts...it's appreciated.

Jerry Update

Just a quick update about Jerry....

You local folks might already know that Jerry is currently hospitalized, and will likely remain so the next 3-5 days.  He has two blood clots in his right lung, is experiencing a lot of pain, and is also running a fever.   Dennis and Katie feel like the medical team is getting a good handle on it, and Jerry has spent the day zonked out after a really rough night.

So, if you can pray for Jerry, and also for Dennis and Katie, that would be fantastic.

For the Macs,
Marci

Thanks!

A big shout out to the good folks at the Santa Cruz Sentinel and Growing Up in Santa Cruz for their help in advertising our Sunday, August 15, 5pm ballgame between the San Jose Giants and the Modesto Nuts!

If you've not picked up a copy of the August edition of Growing Up in Santa Cruz, be sure to do so and find the *awesome* half page ad they generously provided!

Be sure to get your tickets soon via www.followingjerry.com

Go Giants!

Game ON!

The time has come, the time is NOW to get your ticket to the ballgame.

We are just two weeks out and we are anxious to see you all on Sunday, August 15 for the 5pm game at the San Jose Municipal Stadium as the San Jose Giants take on the Modesto Nuts!

Tickets are just $7, and after we cover our event costs, $6 of every ticket goes straight to Jerry's assistance fund.  To cover our costs, we only need to sell about 150 tickets--so, there is great possibility here of adding a great amount to help with Jerry's therapy costs as we have 1200 tickets available for sale.

If you went to the game last year, you know that it is a FANTASTIC way to spend a summer evening.  If you've not been to a minor league baseball game before, it's a real treat.  The baseball is pretty darn good, and the food at the Stadium is REALLY good--seriously, some of the best pulled pork sandwiches on the whole planet and they are even CHEAP.

Anyways, we need your help to sell these tickets.  Last year, the vast majority of tickets were not sold through this website nor at any of our local ticket locations--they were sold by friends and family like you!  So, we humbly ask for your help once more to make this event happen.

If you'd like your own stack of tickets to sell off to your friends, family or coworkers, please contact us at katie@followingjerry.com

If you can help us spread the word via Facebook by setting your status update to point people to this game, we'd love it.  Find the event page for Facebook here and join us!

For all of us on Team MacCallister,
Marci

2nd Annual Follow Jerry.....to a Ballgame!

Mark your calendar RIGHT THIS SECOND for Sunday, Aug 15th , 5pm!

In partnership with the San Jose Giants we will be joining forces to support the MacCallister Family with a benefit baseball game! While the San Jose Giants take on the Modesto Nuts, we'll take over the stadium (literally!) and fill it to overflowing with the friends, family and community that has been supporting this family for these last months.

Invite your friends and family to join us on Sunday, Aug 15th for a 5pm game. If you've never yet been to a minor league ball game, this is a great time to try it out. The venue is extremely family friendly, and kids (and grownups) of all ages will enjoy the feel of the stadium, the great food and seats that are close to the action. Not only can you hear the crack of the bat, but you can also hear the muttering of the players. Depending on the game, this can get pretty interesting......

But here is the best part of all. Tickets are $7 each, and $6 will go straight to supporting Jerry and his recovery fund.

For now, tickets are only available online--just click on the link to the right and we will get your tickets in the mail.

If you would like to have a stack of tickets to sell to your coworkers, friends or family, please email us at ballgame@followingjerry.com and we will get those to you right away.

Please join us and Follow Jerry to a Ballgame! It's gonna be great.

Have you noticed?

I thought I would point out a few changes in case you haven't noticed, we've added a sponsor page as well as a fund raising page, you can access them by clicking on the links above Sponsor Page or Fundraising. I'll be adding an upcoming events page so keep checking back to stay updated in what we are up to and how we are doing in our fund raising efforts for China.

We're also doing the San Jose Giants fund raiser again this year, you can click the flier in the upper right corner for more information.  We could use some help selling tickets, if you would like to help send an email to katie@followingjerry.com, include how many tickets you would like to sell and contact info.

July 4th

Happy Independence Day!

Ordinarily we would be heading to the beach about now, the car loaded as if we were camping for three days, boogie boards, BBQ, ez-up, chairs, fire wood for evening bonfire and enough food to feed an army.  It's been a tradition for us for many years to spend the day on the beach, body surfing, playing volleyball, and barbecuing.  When the sun goes down the bonfire goes up, we break out the smores and watch the fantastic display of fireworks. I will miss our 4th of July tradition greatly, the beach is no longer an option for Jerry, it wouldn't be fun for him sitting idle on the beach while everyone around him was having a great time.  It's time to begin a new tradition, swimming at the pool and barbecuing with friends and family.

We've had a busy month between Jerry, Jessica and I we've had a lot of doctor appointments.  Jerry still has nausea everyday and we are no closer to figuring out why then we were a year ago.  Jerry had another ultrasound and x-ray which both came back normal. On one hand you hope that test results come back normal because you don't want there to be anything wrong, on the other hand you hope the test results come back showing something wrong at least then you would know what your dealing with and hopefully know how to fix it. There is one medication that Jerry has been on since two weeks after the accident which he takes to control nerve pain.  Jerry decided to go off of this med in hopes that it's been causing the nausea however no such luck, he's been off of it for about a month now and still has daily nausea.  Jerry's been experiencing some pretty strange sensations since going off the nerve pain med, he believes it is nerve pain but I'm not so sure.  He felt like his big toes were burning and hurting badly the odd thing is he had ingrown toenails on both big toes that I had trimmed back a few days prior.  He felt like his back was burning as well as sever abdominal cramping that he said felt like someone was punching him in the gut repeatedly.  I felt it was encouraging that he was feeling these things because it is well below the level injury and he generally can't feel anything below the chest.  Jerry didn't see it that way and he makes a good point, "What good does it do me to feel my toes, I still can't move them and it hurts." At any rate the nerve pain became unbearable so Jerry started taking a new nerve pain med, so far the new med is working OK. 

Jerry has been riding the Functional Electrical Stimulation (FES) leg cycle at SCI-FIT for the past year, he also rode the FES arm cycle at Dominican Rehab, unfortunately we are no longer covered by insurance to do the arm cycle.  Jerry has not ridden the arm cycle for about 3 1/2 months and his arms are much weaker now then they were when he was doing the arm cycle. The FES cycle has been pivotal in keeping Jerry's muscles strong and preventing atrophy, which is why we felt very strongly that Jerry needs this equipment at home.  At $20,000 dollars it was a huge investment, we had enough money from past fund raising to pay for about half and then financed the rest.  We are so excited to get the bike and should have it in house by mid August, we'll definitely post pictures when we get it.

Jerry had his 21st birthday last Saturday, he had some friends over to play computer games where they network their computers together.  I think they spent more time networking them and getting set up then they did actually playing the game.  Unfortunately Jerry cut the party short because that was when he was having all the strange nerve pains and he felt like someone was hitting him in the stomach all he wanted to do was get in bed. 

Jessica graduated high school 3 1/2 weeks ago I can't believe the baby is out of school, man I'm getting old.  It's going to be very weird not having any kids at the high school, we have had kids there for the last 10 years. Wow!

Jessica had surgery to repair the damage to her knee on Monday, she is so not a happy camper.  She had 2 tears in her meniscus in which the surgeon couldn't repair, the best he could do was clean up the tears and smooth it out.  Jessica also had her anterior cruciate ligament (ACL) replaced, the surgeon removed her ACL and replaced it with a cadaver ligament.  Jess is bummed out, living on the couch for the past week.  Jess can't get down the stairs to her room so she has been sleeping on the couch.  During the day she has to spend 6 hours on a machine that does range of motion bending her leg up and down. In addition she has leg exercises she has to do, she's not having any fun.

I started this post yesterday on the 4th however had a hard time finishing as we had company for the weekend. I keep saying I will post more often however I get so busy I never seem to get it done.  Thank you to all who still continue to stay with us offering kind words, prayers and support. We appreciate you all so much.

Love to all,
Katie

May 14

I'm so happy to see the sun, life seems so much brighter when the sun is shining. It's been over a month since my last post, I apologize to those of you who worry when there's no post. Not much has changed in Jerry's physical condition, he is still nauseous everyday, it seems as if the nausea is getting worse. Jerry used to get relief from the nausea in the late afternoon and be good through the evening. More and more Jerry is suffering nausea morning noon and night with small windows of relief shortly after taking medication, however the relief is shorter and shorter sometimes only an hour.

Jerry has had some bad days over the last month, coming to terms with the loss of mobility has been tough. The first year was spent focusing on regaining as much mobility as possible. It's disheartening for him to work harder than he ever has in his life only to be able to move his arms a few inches. He's gotten so much stronger in his arms but he still can't even scratch his own nose. We just need to keep reminding him how far he has come, in the beginning he couldn't move his arms at all and now he can drive his wheelchair with the joystick. We just need to keep working and never give up hope.

Dennis built a desk for Jerry so now he has a computer station that he can drive right up to. The first day he tried it out he spent a little too much time at the computer which gave him a neck ache, he needs to start out slow.


Jerry finally got the alternating air pressure mattress for his bed, at first the compressor unit was pretty loud however he's gotten used to it. Jerry sleeps much more comfortably and it's nice not worrying so much about pressure sores.

It's been a busy month which is good, I prefer life when it's busy, too much idle time is not good. Mothers day was wonderful which started with breakfast in bed and ended with a family dinner at Chili's. It was one of the few times that we've been at a restaurant where Jerry could sit comfortably at the table. Most restaurants have handicap access but not very adequate accommodations once your in.

Jessica hurt her knee in softball, her doctor thinks maybe torn MCL, she has an appointment with a specialist today. It's astounding to me that it took a month to get an appointment to be seen by the specialist, ridiculous! The injury was heartbreaking for her it ended her senior year of softball mid season. Jessica had prom, going to prom with a hurt knee meant not much time spent on the dance floor but she made the best of it. Fire fighting internship has been affected as well, she goes however she can't participate in drills. Jess hopes to get clearance to begin practice again, the team won a 3-way tie for first place in league. Jess is hoping she will be able to play in the Central Coast Section games.

Josh has been accepted into UC San Diego's civil engineering graduate program so he will be moving to SD in the fall. Any blog followers down there with job leads give us a shout out. Janea continues to go to Cabrillo and work but is hoping to get a new job working with kids.

That's all for now, thanks for continued support,

Katie

April 7

I hope everyone had a great Easter, with the exception of rain ours was wonderful. We ventured to Richmond to my aunt Steph's house with the family. It was great to see everyone (we missed you Mom, Dad, Mark, Brenda, Brandon, Nick and fam, Phil, Vinny and Rena). Jerry spent over 11 hours in his wheelchair on Easter so needless to say he was in a great deal of pain by the time we got home. It's hard on him to be in his chair for so long but it's good for him, he should spend at least four to five hours in his chair everyday however he refuses to sit in the chair when he's at home. I keep thinking that when the nausea goes away he'd be more willing, unfortunately the nausea persists.

Thanks Trish, Gretch, Zack, Mom, Steph, Wendy, Sharon and all that continue to to follow Jerry's progress through the blog. I appreciate your comments letting us know that we are not alone, kind words and prayers.

My cousin Erin came for a visit for a few days we enjoyed having her. Jessica's on spring break and enjoying the time off. The kids have gone on a hike spent time at the Board Walk and taken Jerry to the movie to see Clash of the Titans. It's been kinda chill around here.

Not much has changed since my last post but I do have good news regarding Jerry's mattress. It's hard to believe that Jerry's been home almost 14 months and still does not have the alternating pressure mattress however we are so close now. The mattress has been ordered and should ship within the next couple of days. The alternating air pressure /low air loss mattress will help prevent Jerry from getting a pressure sore. The mattress has air bladders within that increase and decrease with air pressure on a cycle, this will help prevent any part of Jerry's body, particularly bony parts from experiencing pressure for a prolonged period of time.

It looks like we also have a good chance of getting the portable lift authorized so we can get Jerry in and out of the tub. I'm excited to get the lift, it'll be so much easier to do tub transfers and I know Jerry will enjoy bathing more often. It's amazing that we never stop to think about how life is different for the handicap until we are faced with it in our own family. Things like taking a five minute shower for you or I takes an hour for Jerry. We take so much for granted and have no idea how blessed we are.

Enjoy the sun!

Katie

March 26

I love the sunshine somehow it seems to make me feel all is well with the world even under present circumstances. I've spent some time over the last couple weeks pulling weeds in the yard, it's absurd how much weeds grow. I wish I could keep a house plant alive as well as I grow weeds. Dennis cleaned the garage and I've started a little spring cleaning in the storage room. I say started meaning I've pulled everything out to sort and made a huge mess and haven't had time to get back to it. At any rate I've got spring fever and can't wait for summer.

Jessica's school softball is back in full swing it's been awesome to get out and see a few games, I even got Jerry to a game. Jess is doing well and even made the local paper a couple times. The fire fighting internship has started up so Jess's days are pretty full, school all day, practice until 5:00 games Tuesdays and Thursdays as well as fire internship Tues and Thur from 6:00-9:00 pm, tournaments some weekends and home work. Whew it makes me tired just typing it.

Josh has applied to four colleges and so far has been accepted to UC San Diego, he will be going back to school in the fall to work on his Masters. Josh was laid off and has been on unemployment for a couple months now, he's having a hard time finding a job so if anyone out there has any leads give us a shout out.

Janea is still going to Cabrillo studying early childhood development. Between her working, going to school and spending time with her boyfriend we don't see her much. Janea is great with kids and I'm excited for her to someday get the opportunity to work with them.

Jerry has had two MRI's in the last month one of the C-Spine and one of the brain, both came back normal. It's a strange feeling to hope they find something wrong especially since your supposed to hope they don't find anything wrong. But it's so hard when something is obviously wrong or he wouldn't have been nauseous for the last 14 months. At least if they find the cause they can hopefully know how to fix it. I wish they could find the elusive needle in the haystack, the endless tests are daunting to say the least, we just want it fixed. We are back at SCI-FIT on Fridays now and will begin Wednesdays in April as well. It was wonderful having a break but it's nice to have Jerry working out again. Jerry's therapy at Domican Rehab has come to an end there is no more funding available for it. We will miss his therapists Mary Anne and Terryn greatly and appreciate all they have done to help further Jerry in his recovery.

We have decided to go to China for stem cell therapy, I mentioned before it's not controversial embryonic stem cells it would be adult stem cells harvested from your own body. I've put together a sponsorship letter that I plan to send to large businesses. I need to begin the unpleasant job of fund-raising for the procedure, I'm open to suggestions and help from anyone wanting to get involved.

Lastly I've been asked to post an update with pics on our babies. They are doing great and love to spend the majority of their days outside. For some odd reason they like to sit in the bathtub.

Much love,
Katie

Mr. Ricco loves to lay on the heater vent

Miss Tina loves to sit in the bath tub.

Feb 23, 2010

I thought this journey would get easier as time went on, as the tasks became more routine and the home modifications were complete, however it doesn't seem to be playing out that way. The more time that passes the more sad I become, this cannot be permanent it just CAN'T. Jerry has up days and down days and days when he wants to give up. It's not easy staying strong for him when sometimes I barely have the strength to get through the day.

Jerry is still having nausea daily, it's hard to fathom that he has had nausea almost every day going on fourteen months now and nobody can figure out why. Jerry had an MRI of his neck about a month ago. When the spinal cord has been traumatized it can develop sacks of fluid over time during the healing process which can cause all sorts of problems. The doctor did a C-Spine MRI to rule that occurrence out, thankfully the results came back normal. Jerry now has an MRI scheduled for next week to look at the brain. The doctor wants to check if there is something going on in the nausea center of the brain.

We've taken the month off from SCI-FIT, Jerry and I are getting burnt out on the drive and just needed a break. It's nice to have Wednesdays and Fridays free, not rushing and stressing to get to Pleasanton. We continue to go to PT and OT in Santa Cruz on Tuesdays and Thursdays and usually have some other doctor or dentist appointment on Mondays.

Dennis gave me time off for my birthday, a friend of mine had to go to Las Vegas for her daughters volleyball tournament. Dennis encouraged me to go along and assured me he could hold down the fort until I get back. I was reluctant however he pushed a little which made it easier for me to go. I had a great time but came home more exhausted than I was before I left. I saw the Phantom of the Opera which was spectacular but I gotta say I was so happy to get home. Unfortunately I caught a bug and have been pretty sick for a week, yesterday was my first day back to the land of the living.

Jerry has decided to learn how to be a student in his current condition so he will be taking a class at the community college in the fall. Most likely it will be an easy class just to basically learn how he will get in and out doors, how will he manage notes and home work, what kind of adaptive equipment might be available to him etc. I think it will be good for him to get back to school.

Dennis finished the bathroom it looks so beautiful. Jerry now has the option of taking a shower or a bath. The roll in shower is so convenient however Jerry loves the bath and opts for that most often. We still have not got the bath routine perfected it's difficult keeping him from floating. Here are some pictures of the bathroom:

SCI-FIT made a video of some of the things they do with Jerry, you can watch the video by clicking the play button below.

Thank you to all those who continue to pray for Jerry's recovery, we need to keep hope alive now more then ever.

Much love,
Katie

January 2, 2010 - 1 Year Today

It's hard for me to fathom it's been one year since the day that changed Jerry's and all of our lives, forever. What a year it's been full of emotional highs and lows, great strides toward recovery, much progress and some set backs. We are treating today like any other day, it doesn't have to be a negative reminder of a tragic accident, it is what we make it. But if I'm being honest I feel a little sad that Jerry hasn't regained more mobility. We knew the first year would be crucial and the most mobility he would regain would be in the first year. So I am sad that we have reached the 1 year mark and Jerry isn't as far along as we had hoped. That being said there is so much to be grateful for and just because we've reached the one year mark we have not given up hope, this is NOT as good as it gets. God has blessed us in so many ways, we continue to pray that He will deliver Jerry and restore him to health. Matthew 19:26 "With man this is impossible, but with God all things are possible." The summer staff kids came to visit from Fresno and other places and spent the afternoon and evening with Jerry. He enjoyed seeing them and hanging out and it was a wonderful distraction.

December was very busy preparing for Christmas, continuing therapy and Dennis still working on the house. Jerry enjoyed doing all his shopping online and would get excited when one of his packages would arrive. Jerry wasn't sure who was supposed to get which package and didn't want anyone opening them before Christmas so as not to spoil the surprise. So he made up a game for Christmas morning, each person would grab one of the packages from him then we all opened them at the same time. We then had to decide if the gift we opened belonged to us or someone else. We would exchange the gift with the family member we believed had our gift and Jerry would say how many were right. The exchanging went on until we each had the gift Jerry intended for us, it was something new and fun. Christmas eve we normally drive around and deliver homemade cookies to all of our friends, it's been our tradition for years. It was a little harder this year particularly for Jerry, every pot hole and bump in the road causes him to bounce in his chair and can be very uncomfortable. Not to mention all six of us don't fit in the van as well as we fit in the Suburban. However we pulled it off delivering about 27 cookie packages and even made it to the evening church service. It was good! Sorry Trish we didn't make it up to Bonny Doon :-( next year we'll get an earlier start and one way or another your gettin cookies.

Jerry has enjoyed having his friends home from college he's gone to a party and the movies. The boys also came to the house twice for a LAN party, they network all their computers together and play video games until 2:00 am. It's so great for him to get together with his friends and just be one of the guys again. He loves to have them home but it's hard on him when they go back to school, partly because he misses hanging out with them and partly sad because he's not headed back to school.

Speaking of computers we learned another lesson the hard way. Jerry has a fan that his laptop sits on top of that sucks the heat and blows it out the side. Jerry wanted to put his lap top on his lap so I set it on top of a pillow on his lap. I didn't think there would be a heating problem because the fan lifts the laptop up about 2 inches so air can circulate underneath. Unfortunately Jerry's hand was next to the hot air exhaust blowing out the side. His hand was slowly burning for about 2 hours and he couldn't feel it. The doctor indicated it was second to third degree burns on the V between the thumb and first finger, he had some pretty nasty blisters, they are finally starting to heal.

New years eve was a blast, we had some friends over and played a game and hung out. Unfortunately Josh and Janea were not with us because they had previous plans. It was a last minute party at our house, we were invited to Kris and Nana's party but we were not able to make it so they brought the party to us. Thanks guys! Jessica and Mitch made a balloon drop in the living room with confetti and balloons and decorated for the party. We played a game called "the game of things" ....it was so much fun a must have party game. We were so loud at midnight we could have woke the dead.

Dennis has finished the tile in the bathroom/shower room, he did the last of the grout today. I'm so excited all we have to do now is wait 3 days to seal the grout, then put in the jacuzzi tub and fixtures and a little pluming. We should be able to get Jerry in the tub in about a week. I see the light at the end of the tunnel. Dennis has worked so hard the last 10 months, he deserves a nice long vacation when he's done. When it's all done and cleaned up I'll post pictures.

Well I started this post at 11:00 this morning and have left and come back to it a few times through out the day. It's now 2:00 am and I'm on duty at 4:30 am so time for me to get some shut eye. Thank you all for caring, for the prayers, support and love.

Good night,
Katie