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Saturday, May 3. 2008
It's been awhile since we have been able to put on an update. GO DADDY made some changes and we couldn't get into the site to do an update. Sorry about that. Nick has had some very positive experiences in the past month. First of all, the medication changes have definitely helped. We were concerned that his brain injury was causing his problem but a few changes in meds have made all the difference. He is much less anxious seems to be back to his good temperament.
He participated in his friends Jeff and Alana's wedding as a groomsman. He was so proud to be able to walk (using a cane only) with a bridesmaid and stand up for them. Everyone there was very kind and supportive towards him and he got to see a lot of old friends from high school and college. The best part of the evening was at the reception. He decided it might be fun to try and dance. He started out moving to the music with his mom and then found himself dancing with a whole crowd of girls. He thoroughly enjoyed himself the rest of the night.
Nick has made it a goal to get rid of his cane. He has been trying to walk around the house without any kid of assistance. He still needs his cane or chair if he has to go very far, mostly because he starts to cramp up, but he is definitely making progress. Nick is hoping to get his hand surgery out of the way so he can get started on a vocational rehab program. He is in between therapies right now, so we are trying to find things to do to help him prepare for independence, something he wants more than anything! He named this his "24 hour " therapy program.
Sunday, April 7, 2008
Nick's doctors have been experimenting with his medications and his anxiety has been reduced a great deal over the past month. He enrolled in an online screen writing program just for fun and has been spending a lot of time working on his computer . He has set some big goals for himself for the next few months.
Nick is meeting with a vocational rehabilitation specialist on Tuesday to try and see if he can be trained to go to work. His other big goal is to learn more independent living skills. He got a three wheel bike and has been learning how to ride it. He actually rode from our house, through the park, to Starbucks and back without any assistance. Letting him go out and try things independently is one of the hardest things to do, but he's bound and determined, and it really seemed to boost his spirits to finally be able to do something on his own.
Saturday, March 15, 2008
Monday March 10th marked the third year anniversary of Nick's accident. As always, we made it a celebration of life. We took him to his favorite restaurant, and focused on all the great progress he has made this past year. It's hard to believe that just this time last year he was barley able to balance himself and just started walking with a walker. He is now using his wheelchair only when he leaves home and he's using a single cane to help him balance. He seemed to really enjoy the evening.
Nick's last Botox treatment had a side effect he didn't expect or want. He's unable to use the fingers on his left hand at all. Before the Botox he could slowly get them to grasp a bar or hold onto a cup. Now they are stuck in a straight position. Botox generally lasts about 2 months so, as it wears off he's hoping it will get better. It looks like Nick will need to have a third surgery on his right elbow. His functional arm is his right arm and his last surgery left a nerve pinched. It has already caused some weakening of his fingers and will continue to get worse if it isn't fixed. We're waiting to hear when his surgery will be scheduled.
Nick did have a major disappointment this week. His instructor at ASU has asked that he resign from her class. As we mentioned before, Nick has gone in to a new phase where he is much more anxious. He's become very verbal and opinionated. Right brain injured people often have these types of problems, we just hadn't seen it in Nick until recently. It came on fairly suddenly so we're hoping it's a phase. So many things are changing in him that are good, this is hard for all of us. We're still trying to find the right combination of medications that will help him without negative side effects. So we will use this as a learning experience and help him work on his social skills, then try again in the fall. Nick was so quiet and non-verbal before the accident, this is something none of us are used to.
Another good sign that his brain is continuing to heal is that his double vision is gone! This week at his eye appointment his neuro ophthalmologist said he is back to a normal sight range. Considering his right eye was completely dysfunctional after the accident, it truly is a miracle that he is where he is today.
Saturday, Feb. 23, 2008
Several months ago Nick's Dr. him on a started a new medication, Sinemet, that is actually more for people with Parkinson's disease but felt it was worth a try. At first it seemed to help his cramping a little. Over the past several weeks he has become more anxious and agitated. Now they think it may be due to this medication. He will now gradually go off the medication in hopes that it will help his heightened state of anxiety. He also just had a new round of Botox in his foot, arm and chest, so with any luck he may get a little relief from the cramping with the Botox.
Nick has accumulated a few bumps and bruises over the past few weeks. In one incident he was moving fairly quickly across campus in his power wheelchair, when he hit a bump and went flying out!! A crowd of people gathered around him to help. Being the comedian that he can be, he said "I'm alright" then he got himself to his feet raised his arm in the air and said, "TA -DAH! What would you give me?" One guy said, "I'd give you a 10!" Another said, "I'd give it a 9.5, you need to work on your landing!" He had a pretty swollen arm for a few days but would never admit that it hurt. | |||
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Sunday, Feb. 3, 2008
Nick has made some great strides over the past couple of weeks. He is insisting on walking with his cane instead of using his wheelchair nearly all of the time in the house now. Although he is getting much stronger, his toes and wrist still cramp (from the injury to the basil ganglia area of the brain)throwing him off balance at will. He falls occasionally, but picks himself up and keeps on going. He wants so badly to be able to be on his own some day, he's really pushing himself.
Nick got his grade from his last 3 credit class and it was a B+! Considering the extent of his brain injury, it's amazing how well he is remembering and learning. He's taking two classes this semester at ASU for a total of six credits, so we'll see. His biggest challenges still seem to be his speech, which is very thick due to the cramping of his tongue, and physical problems related to the dystonia and cramping of his muscles. He is currently in speech therapy and the biofeedback he is doing is also focusing on speech articulation. His attitude has been very positive, and he's very confident he will make even more improvements, he just wishes they would come faster.
Sunday, Jan.13,2008
One of Nick's goals was met this weekend as we were able to have his bed moved upstairs to his old room. It was no small feat, his adjustable bed is very heavy, but we hired some movers to get it done. It was a great day for Nick as he has wanted to be back in his own room ever since he's been home. Honestly, we weren't sure we would ever see the day, but once again his determination won out. Nick must be supervised and spotted with a gait belt when he goes up and down the stairs but he is doing all the work!!! We're in the process of getting his bathroom remodeled, then he'll be all set. He's getting better at walking (slowly) with a cane around the house. Being upstairs without his wheelchair will make it a necessity.
Today was Nick's last day to turn in his assignments for his 3 credit intercession on-line class from ASU. It's a theatre class and he had assignments due at noon and midnight 3-4 days a week, with several major projects He's glad to be done but really seemed to enjoy working on his final project, which was a short screenplay. The stress of the pace made his cramping worse, especially in his left wrist and his neck. We may advise him against doing another one like this for awhile. Tomorrow he starts 6 more credits--3 on campus and 3 on-line.
Sunday, Dec. 30, 2007
We hope you all had a wonderful Christmas; we sure did. Nick has been spending more and more time working on standing and walking. He is determined to move back into his former bedroom which is upstairs. He just started with a new therapy group at Banner Desert Rehab Hospital two days a week. They are hoping to take him to the next level and help him achieve his goal.
Nick has been doing more drawings and they have improved a lot since his first attempts after his accident. His art is being displayed this month at the Kerr Cultural Center in Scottsdale where he used to work. The good news is that his right arm seems to have finally healed and he has much better fine motor control. The bad news is that a recent EMG of his arm indicated that he will need another surgery soon. Apparently the last surgery left one of his nerves with ulnar neuropathy. If it is not fixed it could cause permanent damage. Since Nick's only functional hand is his right, it is important to get it fixed. We're in the process of finding a different surgeon to fix it this time.
Nick started another class at ASU online. This class is three credits in less than four weeks, during the intercession. The pace is very fast so he's really been struggling to keep up.
Health and Happiness to all in the new year!
Saturday, Dec. 15, 2007
We are proud to report that Nick has completed his first full semester 3 credit class at ASU since his accident, earning an A (98%) in Creative Writing: English 310. He spent hours and hours on the computer working on his poetry, analysis and creating a 65 page final project. His typing speed is quite slow because he is only able to use his right hand, but he stuck with it. Way to go Nick!
The past month has been one of trials in the area of pain managment. Nick wants so badly not to take pain meds because they make him sluggish and as he says "foggy." Going back on Lyrica became necessary however and it did seem to help take the edge off. He is also taking a new med for Parkinson patients that has seemed to help too, called Sinamet CR. Nick actually researched this on the internet and brought it to his Dr.'s attention. She was willing to let him try it. Nick has also found a doctor in California doing research on secondary dystonia. He is currently trying get approved to be included in his research trials. Nick is becoming a real advocate for himself and hopes to one day help find an effective treatment for those suffering with secondary dystonia.
Nick's determination to walk again has been heightend now that he is not in so much pain. He has been using a cane instead of his wheelchair to walk short distances in the house. He has the occasional fall, but takes it all in stride. It is always worrisome to those around him but he feels if he isn't falling once in awhile he's not working hard enough. His therapist is working on helping him get off the ground on his own. He's also been practicing working on going up and down stairs. He's only allowed to do this when he has on a gait belt and a spotter. Since we have a 16 step curved staircase, this is a real challenge. He is hoping to eventually move his bedroom upstairs where it used to be. We looked into an elevator but the cost was prohibitive. The way he's been working, this may not be too far off.
Sunday, Nov. 25, 2007
We hope you all had a wonderful Thanksgiving. We had dinner at Krista and Matt's house. She put on a delicious feast for our family and Matt's family. We continue to be thankful for all of you, for your prayers and support; we have much to be thankful for.
Nick finally had botox on his left side. It actually seems to be having some effect and his cramping is not quite as bad as it has been. Thank God! He really needed the break. He was also fitted for new Dynasplints for his wrist and his foot. These are worn at night and have tension springs to help put his hand and toes back into the correct position after he cramps when he is asleep.
Nick is still working hard on his creative writing class. His big project is due in early December. It's been keeping him busy.
Sunday, Nov. 11, 2007
The past few weeks have been really difficult for Nick. His cramping is severe, especially in his left arm and wrist. He has been so tight that he has not been able to attend marshal arts and hasn't been able to go or do much of anything except his therapies and doctor appointments. Often when his cramping is this bad it's because he is sick or has an infection, this time we haven't noticed any of those things. He is due for Botox injections this week in him left arm so hopefully it will help some. He really needs a break from the constant pain.
He is scheduled to start with a new speech therapist this week. His speech has become more and more difficult to understand. The more pain there is the worse the speech gets.
Saturday, October 20, 2007
Over the past few weeks we have been trying to get Nick out and doing more activities. He is always a bit reluctant because his cramping gets worse the longer he sits in his wheelchair. We decided to try renting an RV so he could lay down and rest when he needed to. We took him to the mountains overnight one weekend. It was beautiful by Woods Canyon Lake and they have trails that are paved so we could "hike" though the woods. It was a nice change of scenery and we'll probably try it again sometime.
He has also attended Pankration (marshal arts club) again and has been participating. This is most amazing to us as he is actually on the mats wrestling with a partner. Since he is basically only able to use his right side, it's encouraging to see him out there doing something that actually makes him sweat. It's been a great outlet for his frustration and we are so grateful to his coach who has made this all possible.
Nick also attended the ASU-Washington football game last weekend at ASU. Since this is an in-house rivalry game, it was fun to see him decked out in ASU colors. (He went easy on his Dad when the Sun devils won.)
We were touched by a note we received today from one of Nick's CNA's when he was at the Select Hospital. He took the time to write to let Nick know that he has started back to school to become a nurse. This is a portion of what he wrote ... "Some footprints come into your life and they fade away. This one footprint came in a very indirect way but left a huge mark in my life. I am determined to become the best nurse I can be and I owe it to the determination that Nick had to come out of the
coma and be as functional as he is."
Thank you Taffy. This reminds us how much we have been blessed by all the wonderful nurses, CNA's, therapists, doctors, caregivers, family, friends, and others along the way who have contributed to Nick's recovery. He wouldn't be where he is today without all of you!
Friday, Sept. 28,2007
We were excited to learn that Nick was accepted into the Trio Program at ASU. This program will give him life coaching in all aspects of his transition back to school and into the working world. They also provide adaptive equipment and tutors if needed. Nick is really enjoying his on-line poetry class. Although it's on-line, he went to campus to hear an author read their poetry and got to spend some time talking with his professor. He really enjoyed meeting her in person. The anthropology class wasn't what he expected and after much deliberation he decided to drop it to concentrate on his writing and therapies.
The next day he wrote this poem:
Basking in my private den Compounded by numerous things Struggle to fight Struggle to learn As tedious as these things may seem It's a never ending battle TIME is on your side my friend
Thursday, Sept. 13, 2007
Nick has been very busy with school, homework and therapies. He is getting better at getting around on campus in his wheelchair and although his classes are tough, he's enjoying the challenge. He found a tutor through the disabilities resource office that he really likes working with. That has made a big difference for him.
Today he came home from physical therapy very excited because he is now working on walking with a single point cane instead of the quad cane. He is highly motivated because his good friend Jeff asked him to be one of the groomsmen at his wedding next spring. He is determined to be walking a lot better by then.
One of the classes Nick is taking is a creative writing poetry class. This seems to be an especially good way for him to express some of the feelings he has about the accident. He wrote this one today: Are You Alive?
Why didn't you grow? Strapped into the sea, The sea of darkness, It all happens while you bleed,
Dead in the skid free pavement, your words are bleak..., Why did I get stuck inside a wretched body? And why are you free?
One step away from the curb of life, To your right in the crosswalk, ------- SMASH! -------, 110 ft. later, driven into grotesque headstand,
50 days this person lies in a coma, They believe they are on a train, Without a driver and going nowhere, Resembling the fact he has no control of his body,
Who was that person I used to call me? The man is breathing, ******** He's awake, the walls grimace, As if they lost the fight,
My physiatrist is at a standstill, She says I am her worst case, Meanwhile I remain in hyper tonicity, And so the darkness continues...
Saturday, Sept. 1, 2007
Nick made it through the first two weeks of class overcoming obstacles he never imagined. One thing he didn't expect were the crowds of people. Since he was last on campus, he said there are so many more people. Trying to get get through the crowd in his wheelchair and see where he was going was a huge problem. He sits very low and couldn't really see where he needed to be going. It's been over 110 everyday for the past few weeks so it's very hot and uncomfortable outside anyway. The class Nick is taking on campus is an anthropology class with a lot of reading and labs. It looks pretty challenging. He got a lab assistant this week which did help. Even there, he was having difficulty seeing over people to observe the relics. He seems to be enjoying the on-line creative writing class.
Nick's level of frustration seems to be increasing. The more he is out trying to do things he used to do, the more he realizes what he has lost. He is determined to get off a lot of the medication which seems to be causing his cramping and pain to increase, as well as his frustration and anger. Eventually, we hope he can find balance in this area.
Sunday, August 19, 2007
Tomorrow is a big day for Nick. He was accepted back to ASU and will start by taking two classes this semester. We met with the disability services advisor on Friday and he will be given some accommodations to help him get going again. He will be given class notes and extended time on tests which will help alot. His penmanship is not what it used to be and he's slower to write and process but he feels ready to meet the challenge. He's taking one class in Anthropology and one in writing/poetry. He's very excited to get back to doing something more normal.
Sunday, August 5, 2007
We've been enjoying a visit from "Nanny'" for the past few days. She is always so helpful and fun to have here.
Nick is still anxiously waiting to hear whether he was accepted back to ASU. He is enrolled at Mesa Community College as a back up for two classes. He has changed his mind so many times about what he wants to do, but he continues to be interested in writing and has a new found interest in social anthropology. The important thing is that he is still very motivated to work toward a degree and is so hopeful he will get back into ASU. It will be a challenge if he does get in, but we think he's ready to try.
Nick has started a new program of physical therapy at National Neuro which is much closer to home. Since it's so hot, this has been much better for him. He has also been working with two wonderful therapist Sue, who does neuro bio feedback and Jan who does Reiki energy work at a place called Optimal Balancing. It has really helped him to relax . His tone is very bad right now, as he has not had Botox injections for 5 months.
Nick is walking more and more just using a cane. He still relies on the wheelchair for getting around but he is able to use the cane in the house for short distances.
Monday, July 16, 2007
Nick has been seeing what it's like in a hospital from a different perspective, as his dad has been going through two knee replacement surgeries. The first knee went very well, the second was a little tougher and as his body was already in trauma from the first. He's handling the pain with Nick as his coach.
Nick's birthday was what he hoped it would be and more. The band "The Stick Figures" who organized and played a benefit concert for him in 2005, came and played for his birthday. They even let him sing with them, which was the highlight of the evening for Nick.
On a sad note, our family dog of almost 13 years, Bailey beagle, died the day before Nick's birthday from complications of diabetes. He helped us through many hard times and he will be missed so much.
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Wednesday, July 11, 2007
Sorry we've been out of touch for awhile due to computer problems. We hope you all had a nice Fourth of July. It's been really hot here; so much of Nick's time has been spent in the house. We did take Nick to the big fireworks display at Tempe Town Lake, which he seemed to enjoy.
Nick has been researching and came up with a new gene therapy that is being studied at Cornell University for Parkinson movement disorders. He wrote to his doctor to see if he could be included in the study. She is investigating it. His tone (cramping) has been so bad that he is trying to find anything he can to help the problem. He is past due for the Botox injections but can't get on the doctor's schedule until August 16. He learned a lot of great exercises from his Barrows and Z-Health therapist now he needs to continue to work on them on his own. We are also looking into aquatic therapy but haven't found the right program yet.
Nick's dad is in the hospital having both knees replaced. He has told Nick he is going to rely on him to help him rehab his knees and get walking again. He'll be his inspiration, that's for sure.
Nick will celebrate his 24th birthday this Friday. This time last year he was in the hospital recovering from another surgery and an infection, so he was not able to enjoy his birthday. This year he's planning a get together with some of his friends to celebrate. He's been looking forward to this for a long time!
Monday, June 18, 2007
An article on the challenges of finding hit and run drivers appeared in the East Valley Tribune on June 13, 2007. It was not specifically about Nick but his case was mentioned.
Nick's spasms continue to be very severe; they are limiting how much he can work on his walking and other endeavors. He does enjoy getting into the pool where he can walk around a little but mostly just relax.
He did get cleared to reapply to ASU. He is now doing the paper work to get a class for this fall semester.
Tuesday, June 12, 2007
We're not sure why, but Nick's tone has been extremely bad for the past week. His arm and foot are so tight and stiff that he is really struggling to exercise or practice walking. Sometimes it feels like his bones could just snap the cramp is so strong!! He has stopped taking a lot of the medications that he used to take that made him so groggy which may be contributing to the problem. He just hates the cognitive effects of the meds, so I guess that is the tradeoff. He is trying to get ready to go back to school this fall. He needs to be cleared by his psychologist and then he will try and get back to MCC or ASU for at least one or two classes.
It's hard to believe but Nick will be 24 in one month! On his birthday last year he had been in the hospital for two weeks recovering from a surgery that resulted in a staph infection. Although they sent him home on his birthday with an IV bag, it wasn't much of a party. This year he wants to have a big celebration! When we think about where he was a year ago and where he is now, it's apparent he really is making progress.
Sunday, May 27, 2007
It's been a week of emotional ups and downs. Sadly we learned that Nick's cousin Carole, a young mother of two had passed away suddenly. Our hearts go out to her immediate and extended family and her friends. Nick will be traveling with us to go to her service. Fortunately we were able to get airline tickets, an accessible van and hotel room with accessible bathroom. We can't tell you how much we have begun to rely on the ADA (Am with Disabilities Act) to help make Nick's life a little more normal. With the ADA requirements we are able to take him many places that would otherwise be out of reach. The next time you see all those disability parking spots, please know how important they are to many people with disabilities.
On a positive note, Nick was finally approved for speech and occupational therapy to go along with his physical therapy which will start soon. He has been able to exercise a little more every day and his endurance is improving. He is so ready to have a breakthrough. It's been over 100 here every day so he has been spending time in the pool. He is able to practice walking from one end to the other without assistance (except the safety float.) Ultimately we hope this will help his gait when he is trying to walk on land.
Wednesday, May 15, 2007
Nick finally got a clean bill of health from the doctor (no more pneumonia or infection)so he is trying to get back into his exercise program. Last week he was approved to go back to Barrow for six visits for his arm therapy. He's had several and already we are seeing some improvement. His fingers are still weak but he found a finger strengthening device that guitar players use, on the Internet. He ordered it and it just came today, so hopefully it will help. He's really anxious to start playing his guitar again. Nick's a big Suns fan, so he's been watching the playoffs and we're hoping they go all the way this year!
Thursday, May 3, 2007
Nick has had a couple of rough weeks. His arm surgery set him back a lot more than we anticipated. Not only has he been struggling with his arm, but the anesthesia really seemed to slow his system down. He's had a lot of nausea and discomfort. Last Sunday we ended up taking him in to the ER only to find that once again he had a very high white blood count and he had developed pneumonia in his left lung. We are also noticing problems with his short term memory that did not seem to be there before the surgery. Another thing he noticed is that his pinky finger is numb and he's having trouble gripping his pencil. He really needs to get back into therapy but once again, everything is hinging on approval from insurance. He is really getting impatient, which in some ways is good. It usually motivates him to work harder toward his goals. He has been on heavy duty antibiotics for the past four days and his lungs seem to be better. He'll have more tests tomorrow to see if the medicine is working.
Thursday, April 19, 2007
Nick had surgery Monday on his right arm to remove excessive bone that was limiting the rotation of his radius and ulna. He went into it feeling like it would an easy one and afterward said it was his most painful yet!! Apparently there was a lot more bone than they anticipated that had to be chipped away. The good part is that Dr. Worthington felt he got it all and he should have complete rotation when it heals. Nick was in the hospital overnight and then was sent home to rest. He is really struggling with the fact that he really can't use either hand very well right now. His right arm is swollen and in pain from the surgery and his left is cramping worse than ever due to the dystonia. It's always worse when his body has any kind of trauma. So for a short time he is completely dependent again, which he really hates. He was making such good progress, hopefully this is just a "bump in the road," and he'll be over it soon.
So far we have not seen any real positive effects from the Botox but with all the trauma in his body, it's hard to tell.
Wednesday, April 11, 2007
We hope you all had a wonderful Easter. Quite a few positive things have happened since our last entry. Nick has been using a device called the Bioness electrical stimulator on his left leg. It has really helped to improve his walking, especially the gate. He surprised us all on Easter when we arrived at Krista's new house; he asked for his walker and proceeded to walk from the car into the house and then took a seat on the sofa. Things we all take so much for granted are such big milestones for him. It is just so good to see him upright and moving around again. Another good thing that is happening is that he has gone down significantly on a lot of the medications he was taking. This has really improved his cognition. He did finally get Botox injections again on Monday, which hopefully will help with the cramping on his left side. They used Botox B this time which actually stings a bit when they inject it but he said he's willing to put up with that in order to get a better result over time.
Nick is scheduled for yet another surgery this coming Monday. This time it's on his right arm. His right arm has an overgrowth of bone where it was repaired which is causing the radius and ulna to bridge together. This is restricting his rotation and preventing him from being completely functional on the right side. Since this is his "good" arm, they felt it important to take care of it. Apparently this is a common problem for people with brain injuries. This will be the third surgery in this same area. Let's hope three times is the charm!
Tuesday, March 27, 2007
He did it! Nick was able to walk down the aisle at his sister's wedding using his walker. He had two beautiful bridesmaids on each side (Matt's sisters.) He looked handsome in his tux and slowly but surely stood tall and walked all the way to the front. There weren't many dry eyes as he carefully moved along. When he got to the front and was about to turn to take his place he suddenly leaned to the left and said "whoa," when everyone gasped he looked back, grinned and said "got ya." The tension broke, everyone laughed and then applauded. Nick always did have a good sense of humor! He actually stood the entire time and walked out at the end. He slept soundly until noon the next day he was so exhausted and relieved to have reached his goal.
The day before the wedding we had a horrible wind and rain storm. Since it is usually so nice here, it was really worrisome to think our garden wedding was going to be moved inside. Although more of the same was predicted, it never materialized. It was actually a perfect 75 with no wind! Krista was a beautiful bride and the evening was wonderful!
Nick is now setting new goals and although it will be tough, we know he will succeed.
Saturday, March 10, 2007
Today, March 10, 2007, marks the two year anniversary of Nicks accident.
It has been 730 days since my lungs stopped breathing and my heart stopped beating. All I could think was, "who needs that, for a couple minutes," I could fight it and win, and I did. The fact that I'm typing this is a testament to that. All I needed were people around me like Scott Brady and people like you, showing me that my life was worth fighting for; a seemingly sure lost fight. Thank you. Nick
I thank God everyday that Nick is still with us and that he will continue to recover. To say that this has been a hard journey is an understatement, but along the way there have been so many reasons to be grateful. We couldn't have done it without all of you! Elaine
Friday, Feb. 23, 2007
Nick has had a couple of pretty good weeks. We have started slowly reducing a lot of the medication that he is on and while his cramping and pain are still bad they don't seem any worse! He is definitely less sleepy and more alert than before. He is making great progress with his Z-Health therapy. His posture and balance are much better and he is really working on stamina and endurance. Today he beat all his own records by riding 3.1 miles on his stationary bike (in one sitting.) He and his therapist are working on walking down an imaginary isle practicing for Krista's wedding. The first time he walked it, he clocked in at 6 minutes. He is now walking it in about three minutes. Over the next month he plans to reduce that even more. He's still using a walker but his gate is improving, slowly but surely.
Yesterday Nick had a mapping done of his brain activity. The technician felt that his brain activity was much improved from the last time it was done. When Nick was first injured, a study was done and there were huge gaps in his brain activity. The neurologist told us that we should prepare for the possibility that he would be vegetative. This just goes to show that prayer and hard work do pay off! It's hard to believe it has almost been two years since Nick was injured. We are so proud of his determination and effort.
Friday, February 2, 2007
Nick took a step today without any one touching him!!! In the past someone was always supporting him or he was using his walker. This time he had no help! We really think he is on the verge of a break through. Unfortunately the BoTox injections haven't shown any definable positive effects but his motivation to overcome the tone is very high right now. He has been working with a program called Z-Health, and has shown some exciting results, especially with his balance and flexibility. His therapist, Kathy, is very positive and encouraging, something he really needs right now.
Nick's lungs are much better now after antibiotics and breathing treatments which really helps his energy level. His caregiver and sister set up a Texas Hold'em game with Nick and some of his friends. He had a good time and came down to the last hand before losing. Thankfully he still has good cognitive skills.
We found out that we will need a new caregiver again soon. Nick's current caregiver's husband got a job out of state and she will be leaving next month. We're hoping to find a young person who has an interest in physical therapy or nursing. If you know of anyone who might be interested, please contact us.
Thursday, January 11, 2007
Happy New Year! So far 2007 has been a year of ups and downs. Nick finally got the Botox treatments in his muscles, but it's been over four weeks and he isn't seeing as much an effect as we were hoping for. In fact his cramping has been so bad the therapist were worried he might have another infection in his body. Unfortunately they were right. Today Nick was put back on a high dose of antibiotic and will go in for lung x-rays tomorrow to rule out pneumonia. He has been wheezing a lot so he is now using a breathing machine called a nebulizer as needed .
On the bright side, Nick is really making good progress in walking and balancing while standing. He is getting more and more comfortable and strong. His therapist at Barrow had him try a new device called an e-stem that straps on his calf and give his foot an electrical stimulation when the knee bends. This causes the foot to flex appropriately and he has been able to walk with a flat foot for the first time. It is not covered by insurance, but may well be worth the $5,000.00 if it will help him gain his ability to walk safely. The hope is that after a time his brain would retrain a new pathway and he would not need the device. We are also looking in to a program called Z Health, for Nick to work with a personal trainer to retrain his nerves. This would take place on days when he did not have Barrow outpatient rehab.
Nick is really interested in taking another class this semester too, so he'll be choosing something soon. We're considering something on line.
Friday, December 29, 2006
We hope you all had a wonderful Christmas and are looking forward to the new year. We certainly are. Nick's Botox was done last Thursday and so far we have seen little or no positive results. It can sometimes take two weeks before any noticeable difference so we continue to hope it still will work. His doctor said he was one of the toughest people she had ever seen. His pain tolerance is incredible. She injected him right through the bottom of his foot, his calf, his pec and neck and he didn't even flinch!
He has been working hard during physical therapy at using his left leg. They now have him walking with one crutch. He has a problem with shaking which the therapist said is caused by the brain injury and if he puts weight through his limbs it eventually subsides (temporarily.) Nick's goal for this month is to walk small distances in the house using his walker instead of his chair. He is making progress but it is a very slow process.
Nick finished his class at MCC in graphic arts and is now trying to decide on his next class. He is really interested in screen writing but that would require going back to ASU. He feels like he is ready for the challenge, we're just not sure if we can fit it in with all of his doctor appointments and therapies which should be starting up again soon.
At Nick's last visit with his orthopedic surgeon, he was told that his knee is healing nicely but his right elbow is developing an overgrowth of bone that is reducing the rotation in his right arm. He has already had surgery on this area twice since his accident. He has decided to put this surgery off until next spring.
Suzanne is here visiting from Seattle this weekend so Nick is in good spirits and we're planning a few activities if he is up to it.
Happy New Year to You All!
Saturday, December 16, 2006
Hi, this is Nick.
Merry Christmas to everyone and thanks for all the support you have given me. I really appreciate it.
We had a surprise 25th birthday party for my sister last night and we pulled it off great! She was really surprised, thanks to me stalling her at the movies so they could get everything set up back at the house.
I'm overdue for Botox and that has made my cramping, especially in my arm really bad. The doctor said I am a special case, and all the typical methods of treatment have failed. When I met with her last time, I had researched the trigger points in my arm that I think are causing the cramping and tone. I typed out a list of where I definitely wanted it done and which muscles were affected by the tone and preventing me from walking. I think that impressed her because she is finally going to give me Botox in the muscles I asked for and she asked me to keep track of how each muscle responds to the treatment. My appointment is on Thursday this week, hopefully it will be successful. That would make my Christmas merry!
Rupe
Thursday, December 7, 2006
Nick finally was cleared by insurance to start back at Barrow Outpatient Rehab today with physical therapy. He is with the same therapist he had before who we really liked. Although he was only there for an hour he seems pretty worn out tonight. Ever since the surgery he seems much more lethargic. We are really hoping that getting him back into a therapy routine will pick his spirits up a little. Nick's knee seems to be healing pretty well but they want to take the rehab slow to make sure he does not injure himself. He has fallen several times in the past couple of weeks, mostly from losing his balance when he is trying to lean over to get something. So far he has not hurt himself falling.
The dry Phoenix air is creating a new problem for Nick. His skin is so dry he is getting eczema pretty bad. He starts itching and scratching and it's really becoming inflamed. All the usual treatments don't seem to be working. If any of you have any good remedies, we would love to know. He is also experiencing a lot of coughing and asthma symptoms. This may also be contributing to his lack of energy.
Nick and mom have been taking an art class through the Brain Injury Association of Arizona. A wonderful artist, Marianne Cox, is donating her time to teach us how to paint with different mediums. It is very therapeutic and both of us are really enjoying it.
Friday, Nov. 24, 2006
We hope you all had a wonderful Thanksgiving. We celebrated at home with a traditional dinner with just our little family and Krista's fiance Matt. We are so thankful to still be together. Nick's knee is healing nicely from the surgery and he got the "ok" from the doctor to take off the brace and start using it as long as it feels comfortable. We are hopeful he will get started back at Barrows in therapy next week. His asthma is under control with the use of an inhaler and he is feeling a little stronger. He is even looking forward to going to a movie with a friend this weekend. Sitting for any length of time in his wheelchair is always a concern but he really wants to try getting out more. He really misses going out with his friends.
Thursday, Nov. 16, 2006
Nothing ever really goes the way we think it should. On Monday afternoon Nick's lungs sounded congested and he was wheezing. He had a scheduled appointment with his pain management doctor so we waited until he had his appointment at 4:45 to have him checked out. The nurse said his left lung sounded very congested and she told us to go to urgent care right away for an x-ray. We took him in thinking that once again he was developing an infection. To our surprise they said he did not appear to have an infection but they were concerned that he might have a blood clot in his lung and that he would need to go to the hospital right away. We have a new hospital in Gilbert just 7 miles from our house so he was seen at the ER. Fortunately, he did not have a blood clot, but while we were there he started vomiting, alot.!! He became so ill they finally admitted him at 4:00am and put him on IV fluids and ran more tests. After all the tests, they determined he had an asthma attack combined with a stomach virus. He is now home resting and although he is not 100%, he isn't so violently ill. It's hard to tell how his knee is doing because he has been too sick to get up and try and use it. We're hoping to get him up a little today. He's never really had this type of asthma before so this is something new to deal with.
Wednesday, November 8, 2006
Nick had his knee surgery yesterday. His ACL was totally replaced and the torn cartilage was trimmed up. The doctor said that everything went well and he was able to come home. The leg is in a brace, he can put weight on it but is not supposed to bend it more than 30 degrees until he sees the doctor in 2 weeks. The anesthesia just started to wear off at bedtime so we don't yet know how painful it is going to be or him. He did get sick during the night, but we were told that was a possibility due to the anesthesia.
We have a temporary care giver for the rest of this week then we have someone starting next week that will take over. She will be able to be here during the morning and also drive Nick to his appointments and school.
Saturday, November 4, 2006
We've had several weeks of frustration and change. Nick's arm, hamstring and foot are cramping more now that the Botox has worn off. He was supposed to have Botox at the end of this month but the doctor has no time to see him. He is on a waiting list and can only hope and pray that an opening will come up. Although he Botox doesn't take away the problem it definitely helps! Nick makes his best progress when it is effective. Besides trying to fight through the pain, the only way to help him now is with medication and it makes him so sleepy. Nick was discharged from Barrow outpatient therapy on Thursday since he will be having knee surgery on Tuesday, Nov. 7......at least we hope so. John had the stomach flu on Thursday and Friday and now Nick has it. He was pretty sick last night but hopefully it will be over within 24 hours. This surgery has been delayed three different times before, each time due to some type of infection or illness. Nick really wants to get this over with so he can get on with his rehabilitation and eventually be able to walk again.
Nick and his caregiver parted ways last week so we are in the process of trying to fill the position. Nick is getting much more independent and capable of doing a lot for himself but he still needs someone to help out with his daily living and chores. We have a good lead on someone who is interested. Keep your fingers crossed that the caregiver and the surgery both work out.
Tuesday, October 17, 2006
No news is good news. Sorry it's been awhile since our last entry. Nick has actually been doing quite well in many ways. He is loving his graphic arts class and spends hours working on his projects. His back hurts if he sits in the wheelchair too long so that is the one drawback to doing a lot of computer work. He has been making excellent progress in his outpatient therapy, and is actually working on walking with arm supports instead of a walker. His longest so far was 80'. Although his dystonia and cramping are starting to get worse as his Botox wears off, he is fighting hard to work through it. His knee surgery has been set for Nov. 7. They will replace the ACL ligament with a cadaver ligament and clean up the meniscus. Although we are not looking forward to having him go through yet another surgery, Nick is really looking forward to having his knee fixed so it does not hyperextend and hurt every time he takes a step.
Friday, September 22, 2006
Apparently one of the reasons Nick was so sluggish is that he was fighting an infection in his body. This also explains why his cramping seemed to be getting worse. By Friday night last week he had a full blown cold and by Saturday, he was wheezing and having trouble breathing. We took him to the ER for a breathing treatment , they did labs which showed his white blood count was up and determined he had bronchitis. After being on antibiotics this week he is getting better, although he still can't quite seem to shake the cough.
Nick was well enough by Wednesday to go to Barrow outpatient for his evaluation to be admitted back to therapy. He was very excited at the response he was given by his former therapists. They were overjoyed with the progress he had made since they last saw him. One of them even commented that he had made more progress in the four months that he was away than anyone they had ever seen! Nick came home so inspired to get back to working hard. It was really a wonderful and uplifting day for him. We have also been fortunate to find a wonderful young woman named Amanda who we've hired to be Nick's driver. She is the answer to a prayer, as she is able to take him to school and to Barrows, at least for now.
Nick loves his class in graphic arts. Although it takes him a lot longer to do his work than it would have before the accident, he has been able to do all of the assignments so far.
Krista and some of her friends tried to take him to a movie tonight. She said he nodded off during about half of the movie (he takes after his mom!)
Monday, September 10, 2006
One word that might describe Nick over the past couple of weeks is "sluggish." He just can't seem to get a move on. He has been falling asleep in his food, at his computer and of course while watching TV. Naturally we have been pretty concerned and have spoken to his doctors. The Botox combined with all the medicines he needs are probably having this effect. Unfortunately the Botox hasn't really had a positive effect on the cramping in his left arm yet. We continue to hope and pray.
Nick has had a couple of very good experiences. He decided he wanted to try taking a class again. We thought it would be best to start small, so he is enrolled in a 1 credit graphic arts class at Mesa Community College. He has been to a couple of classes but really loves it so far. Our biggest challenge is finding a way to get him to class. We were able to get a van with a lift for his wheelchair but are relying on our wonderful friends with flexible schedules to take turns driving him in the van. He only goes one day a week so it has worked out so far.
Today we had great news. Nick has been cleared to go back to St Jo for more outpatient therapy. We are so happy about this as he made the best progress in his recovery while working at the outpatient clinic. Now our challenge of how we will get him to and from. The medical vans supposedly are available but at least once a week they were either really late or didn't show up at all. We need to do some serious looking over the next few days to see what we can come up with.
Nick's orthopedic surgeon determined today that he was ready to have his ACL fixed in his left knee. Nick really feels this is standing in the way of his walking. He will need to have extensive labs to make sure he is healthy enough for surgery and then they will set the date. The doctor is very busy so it probably won't be for at least six weeks.
For past updates, see the News Archive page
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