Monday, September 30, 2013

Back From La Jolla VA

Andrew spent a week in the VA (in-patient) in La Jolla.  He does this every year . . . and hates it just the same every year.  They don't have all the premium channels he watches and he says it's really noisy, so he doesn't get good sleep.  He spends time in-patient so they can run tests on organs, bones, blood, etc.

All his tests have come back good . . . he is very healthy.  His docs there are always surprised at how healthy he is for his high level of injury.  He's really never had any skin issues, his bones are still dense and his organs are working well.  His breathing continues to improve and he has pretty much developed a normal cough, at this time.  We were trying to figure out how often he has needed to be manually coughed in the last year, and we think it is less than 10 times total.  I can remember days where I had to cough and suction him over 30 times in just one day.  He has come so far!  He still has a lot of nerve sensation in his feet and hands.  We are certain this is from the activity-based therapies he was doing.  It was such a shame when we learned he could no longer participate in this therapy . . . but, his health was the most important thing in that decision.

He was happy to get home and watch all the season starts to his favorite shows.  He was VERY disappointed to find that the last show (series finale) of Dexter did not record correctly.  I am trying to find a copy of that last show for him.  If anyone knows where I can get this . . . please let me know.  He has watched Dexter from the very beginning and really wants to see it.  Of course, Breaking Bad ended and he was able to watch that one (thankfully).

Andrew has agreed to do a video blog post.  He says he doesn't know what he will say . . . I just told him to tell everyone how he's been doing.  We will get it done soon . . . so, keep an eye out for that one!

I've been really busy with a new project . . . having to do with helping others with Spinal Cord Injury.  I will soon unveil all the details . . . it is all very exciting!

That's it for now . . . God Bless,
Joye

Sunday, September 8, 2013

It's Been A Long Time!

So, I was going through some of my old research on Andrew's recovery over the past 5 1/2 years and opened his blog and it brought back so much for me. I am so glad I was talked into doing this blog for him when he was first injured. I had forgotten so much and it was nice to have this diary to bring back some memories. It has inspired me to blog some more about where we have been and where we are headed.

I will bring you up to date on Andrew's status as well as what I'm doing and what our kids have been up to.

ANDREW: We now live in the North Phoenix area. We have modified our home for Andrew's needs and set up a living situation that accommodates both his and my needs as we live our lives. Andrew is now unable to do a lot of the alternative therapies as we have learned that his spine has further damage, and this type of exercise can really harm him. There are no regrets in him having done the alternative therapies, in fact . . . we believe these therapies directly contribute to the health he enjoys to this day. Andrew's lungs are very healthy and he breaths just like an able bodied person. He still does not have a 100% cough, but at this time, I cannot tell you the last time I had to manually "cough" him. Andrew has not had one single infection since he went through his alternative therapies. We believe the way his body was exercised as an able bodied person is the reason his body is so healthy now. Andrew spends most of his day watching his favorite shows. He streams Netflix, has all the movie channels and he LOVES his Dish HOPPER. He also likes to spend some time outside in our courtyard listening to his music. He says he is quite fulfilled in his life and is happy on a daily basis, which still to this day is quite amazing to me. Andrew still has some core pain in his lower back, which is attributed to the spinal damage that is still occurring. He still enjoys a normal diet and he sleeps really well every night. We have a full-time caregiver who also lives in our home (Tim) and a part-time caregiver (Heidi) that works about 15 hours a week. Andrew's mom makes two trips out per year, and usually stays about a month each time. They enjoy their TV shows together and he really enjoys the Caribbean cuisine she cooks for him. Last Christmas, his aunt Narrine was also able to visit for about 10 days. Andrew would sill like to have more visitors!!

ME: I was recently able to return to the workforce. It was very difficult to get everyone to the point where I could be away from the house on a full-time basis . . . but, everyone pitched in and made it happen. I work in Carefree as a Project Manager for an addiction therapies and research company/foundation and author (Dr. Patrick Carnes). He was in need of someone to come in and get their Intellectual Property needs in order, as well as begin archiving many years of articles, manuscripts, and research for a future museum. I am loving the work and really loving being able to get out of the house. A few years ago, I began work on a book about Andrew's life and recently have decided to dust it off and finish my work on it. I will keep you posted on my progress.

THE KIDS: In 2010, my oldest (Bobbi) married her high school sweetheart (Chance). They very quickly made me a Nana with their first born son, Connor, who is the light of my life. Connor just turned three last week and just before that, on July 1st, his baby sister Pyper was born. She is the most precious little baby girl and I just cannot get enough of her sweet little face. I was informed very soon after her birth that they are not done . . . I can expect more beautiful grandbabies from them in the future, which elates me. C.J. and Drew graduated Wickenburg High School in May and they both began classes this Fall semester at Glendale Community College. They are sharing an apartment together right near the college . . . and are doing great. C.J. is pursuing Criminal Justice, like his dad . . . and Drew is pursuing Physical Therapy, most likely because of her dad.

I do regret that I set this blog aside, but as we learned how to live in our new life situation . . . there came a moment when I had to set it aside and make my way through some trial and error. I can remember when we went through our Life classes at Craig Hospital during his acute therapy, we were told that these years of trial and error would happen and we would eventually find our way and way of being. They were so right with that prediction. It took a while to get settled, but we are very settled in our life now, and it is my intention to take this journey we've been on and turn it into something really great. More on THAT to come!

We hope all is well with our friends who we've not had contact with in a while. You are not forgotten! Drop us a line on here anytime . . . I will be checking and blogging often.

Take Care and God Bless,
Joye

Saturday, November 13, 2010

Getting Closer!

Andrew's gym is nearly complete. I picked up his FES (Fundamental Electronic Stimulator) Bike yesterday and his work-out table is nearly complete as well. The bike is amazing. We will hook electronic stimulators to specific areas on his legs and/or arms and back and a current is signaled in a specific sequence which causes his muscles to react and actually pedal the bike himself. It's not an automatic thing that pedals for him. His muscles make it happen. It's great exercise and the repitition is necessary for reorganizing his central nervous system.

I ordered the bike from a company that was conducting a demonstration at a conference held in Phoenix this week. It was a conference about new therapies and medicines available for those with spinal cord injuries. I was lucky enough to be able to go pick the bike up instead of waiting the standard 8 weeks for one. While in the lobby, I was waiting for the company rep to come out and get me to give me the bike . . . I saw a man walking through the lobby. I recognized him to be Patrick Rummerfield. Patrick is the world's only fully functioning quadriplegic. I have had the opportunity to speak with him over the phone and a bit on Facebook, but I'd never met him before. I introduced myself and he remember who me and Andrew were. I was able to speak with him for a moment and it was so inspiring. He truly is walking hope! What an amazing person he is.

We will be completing the remote set-up on the bike on Monday and Andrew will be well on his way. He's very excited and anxious to get going. He was able to get on the FES bikes at Project Walk a lot, and it was amazing how tired they really made him. His muscles really have to work and that can only be a good thing for him and his body.

Andrew is nearly completely off his neuro meds now. He went from beginning of injury being on 2400 mg of Neurontin (Gabapentin) to zero last week. Neurontin is used for nerve pain and basically further keeps you from feeling anything beyond what you already can't feel from being paralyzed. Even though Andrew is paralyzed, he does have annoying feeling and pain in his body. Unfortunately, these meds can hinder what the activity-based excercise does. So far though, the most he's feeling is a tingling and buzzing feeling in his feet and hands. We have also decreased his Baclofen by a lot, and are now going to competely get him off that as well. Baclofen is used to keep him from having so many involuntary spasms. With activity-based excercise, spasms are actually a good thing. They are used to promote movement and are very necessary when doing weight-bearing activities. He is currently on 60 mg a day . . . which is a lot less than the 160 mg he used to take a day. We decrease by 10 mg a week, so in about 6 weeks he'll be free of the Baclofen. His spasms will be crazy, but he says he doesn't care . . . he just wants to be off those meds. He is an amazing person, that's for sure.

We are still waiting for his slide board and his standing frame to come in. Those pieces of equipment are also vital to his program because they are for weight-bearing activity and help to keep his bones dense. Doctor's are amazed at how dense Andrew's bones are for being paralyzed now for over 2.5 years. His density really has not decreased. They attribute that to how much he was in the gym before his injury as well as the activity-based therapy he has received since being injured.

I will keep posting as we progress in the gym and as Andrew begins his home-based program. God is making this happen and we all know there is so much more to come.

God Bless you all,
Joye

Wednesday, October 20, 2010

Where We Are Now . . .

It's been forever since we have been able to blog for Andrew, but here we are again. We set the blogging aside for a while because we were going through many changes and regrouping. We've since made many changes and are finally settled and are happy to report we will be blogging on Andrew's progess once again.

We left Cali back in December '09 and relocated to Congress, AZ. It's a very rural area just north of Wickenburg where all of my family live. We would have liked to have gone back to Yuma, however the VA clinic there is just not equipped to handle someone with the level of injury such as Andrew's. We are just about an hour away from the VA hospital here and they have a wonderful Spinal Cord Injury unit there. We have a great house here and are loving how peaceful it is out here in the country. The kids have a horse a quad and a dirt bike to keep them busy and they are loving going to Wickenburg High School (same high school I graduated from).

Back in March, Bobbi (the oldest) got married to Chance Thompson and quickly made me a grandma 6 weeks ago. They had Baby Connor and he is the light of our life. Drew is playing volleyball and is planning on playing basketball, and C.J. is riding his dirt bike and his horse as much as he can. He wants to wrestle and then of course play baseball in the spring.

Recently, an addition was put on to the house which consists of a new (very large) master bedroom, roll-in shower for Andrew, and best of all a new gym for his therapy. This was my dad's project and everything went very smoothly (thanks Dad!). Andrew has two nurses of which actually relocated to this area with us to take care of him. They are like family and we are so blessed to have them. John came with us from Oceanside and Judy came to us from Yuma. John has also been through the Project Walk home training program to give Andrew his therapy here at home. We will be putting an FES arm and leg cycle in the gym as well as a Total Gym slide board, a standing frame, and a big table to work him out on.

Andrew was recently re-evaluated at his annual exam at the VA-SCI hospital in San Diego and has been rediagnosed from a C-2 to a C-3 level of injury. This means his function and sensation levels are getting better. He also no longer has a trachestomy and he has a pretty decent cough. We are able to manually cough him if he's unable to do it himself. His voice is much louder and it's nice that he doesn't have the pain from his trachestomy. We have also worked hard at decreasing his meds. The only controlled med he takes now is Ambien and he's nearly off all his baclofen and nuerontin which control his spasms and nerve pain. These meds counter some of what we are trying to achieve with his therapy. Spasms are actually a good thing with the kind of therapy he takes.

We are going to be using this blog to not only update family and friends of his progress with his therapy, but his nurses and myself are going to use it to journal it so we have a good record. We fill good things are coming and we want to keep track of every single thing. Andrew has gotten unbelievable upper body strength and even a bit of a bicept coming in. His deltoid is very strong and his sensation area is now below is nipples. He wants very bad to get to the point where he can hold Baby Connor. We will be posting video of his excersise and we also want to keep record of how he feels each day with his therapy and not having meds. Please feel free to comment in . . . we will read them to him for support and inspiration. He is so dedicated to his therapy and so excited to have the equipment right here in his own home.

Thank you all for your support and prayers . . . God has been so good to us.

God Bless,
Joye

Wednesday, August 26, 2009

Project Walk . . . Week 8 and 9

Sorry I skipped a week in posting to the blog . . . I've been very busy and time slipped by. The good news is . . . the last couple of weeks have been very productive for Andrew.

The staff at Project Walk have been diligently working Andrew's body out 3 days per week for 2 hours each day. They continue to work both the upper and lower extremities and his arms and legs are getting stronger with every workout.

Earlier this month I posted some videos showing Andrew working out at Project Walk; one in particular showed him on a Total Gym sliding board and a trainer was using a spasm (involuntary movement) to try and elicit some voluntary movement. Well, today he actually got a little voluntary movement. Not only was he controlling this movement very nicely, but he was also able to feel the muscle working and stretching as he did this.

I have posted the video of the voluntary movement below . . . you can see that his trainer is just sitting in front of him relaxing and not even touching him as he does it. Andrew is very tired tonight and definitely feeling sore and fatigued from his workout today.

Even though time goes on and it seems like nothing is happening . . . it's days like today that we really feel God's blessings. Please join us in prayer and give thanks to God for so many blessings and miracles in Andrew's recovery. None of this would be possible without Him!

God Bless you all. Joye

Monday, August 10, 2009

Project Walk . . . Week 7

Another great week. A lot of the same, which I suppose is how it's going to be for a while as they continue to work Andrew's body out in order to build some muscle.

We are still working on decreasing medications . . . I believe we are finally at the 50% decrease mark. It is nice not having to constantly be giving Andrew meds all day long. He is feeling okay with the decrease . . . he spasms a lot more and feels pain more too; but he figures "feeling" is "feeling" whether it's pain or not, he'd rather be feeling. And, to all our surprise, the pain is really not as bad as we were anticipating . . . Andrew says it's more of an awareness of discomfort rather than actual piercing pain. I'm very thankful for that.

We are really enjoying Andrew's new bed the VA provided for him. It's quite a "smart" bed as it detects pressure and is able to put in or take out air in order to shift his weight enough, as to get him off a pressure area. I am able to set his timer on the bed so that it will automatically alternate his position during the night and I'm able to sleep more, which is truly a blessing for sure. It's also so quick and doesn't really disturb him during the weight shift so that Andrew is also able to sleep through the repositioning as well.

We are looking forward to another week of therapy and would like you to all pray with us for Andrew to begin to see some pay-off to all of his hard work. He's not becoming discouraged, but he did relate to me that he's anxious to see something happen soon. I have no doubt that God is going to show him something very soon.

God Bless, Joye

Tuesday, August 4, 2009

Project Walk . . . Week 6

Not too much to report from the past week as it was mostly a week of re-doing and getting Andrew's body used to the work-outs again, due to his 8-day stay at the VA. We are excited to learn that he is now considered a Project Walk In-House (permanent) client and he has a set weekly schedule of Monday, Wednesday, Friday (4-6pm). Scheduling is a challenge at Project Walk, so Andrew has definitely been blessed with this awesome schedule.

Andrew is focused and ready to dig his feet in deep and start moving his body. He is so much stronger now than when we first arrived and he just looks as though he could stand up and get out of his chair at any moment. It's amazing what a little exercise can do for the body.

Some more good news from the VA: Andrew will be re-evaluated in approximately a month for consideration in getting his tracheostomy reversed . . . decannulated (I believe it's called). His lungs and diaphragm are obviously getting stronger and he is getting better at coughing and keeping his lungs clear of secretions. Please keep him in prayer that the right decision is made with regard to this. I would love to see the tube in his throat removed, but only if it is the right thing for his health.

I have posted 3 videos below of some of the exercises Andrew is regularly doing during his work-outs. I wish they could be longer, but I take them with my phone and if they are any longer the file is too large for me to send. I will figure something better out soon so that I can take longer videos.

We are missing everyone in Yuma . . . and love to read your posts, so keep 'em coming. God blesses each and every moment and we give thanks for that daily.

Joye