At this Christmas time, the Maughan family are very grateful for all the events that have happened this year. We are grateful that Jeff found such a sweetheart in Kallie, and for their wedding in May. We are thankful for the chance to meet and spend time with family at our reunions this year. We are grateful for the opportunity to go to China and receive stem cell treatment for Dan, and we are especially thankful for the many people who donated to this cause. We have been given a second chance to make a difference for Dan, and we are so thankful for this opportunity. We are thankful for the many new friends and wonderful people that we met during our China adventure - it was truly an experience of a lifetime...
Dan is working hard at therapy, we do see some measured improvements (faster lip movement, better walking when in therapy), but we still struggle with incorporating these improvements into daily life patterns. Dan has 21 years of habits -- and it takes a lot of focus and concentration not to walk the way he has walked all these years, and not to talk the way he has talked all these years... so we continue to focus and work and pray that the Lord will bless Dan with the things that he can not do for himself. We pray that the stem cells will take root in the damaged areas and that we will see a difference from this treatment.... and we pray for all of our other friends that have had this treatment... that their loved ones may be healed and that life will improve for all of us. I love being a part of this community of 'pioneers' and look for great things to happen in all of our lives.
I would like to share with you a funny video clip that Jeff put together for our family -- I hope it will make you smile and that it will bring a little cheer into your hearts at this wonderful Christmas season.
Our wonderful children wishing you a very Merry Christmas!
May we all remember the true meaning of Christmas, and be grateful for the greatest Gift of all -- our Savior, Jesus Christ -- who gave His life for us, that we might be healed of all our infirmities (whether spiritual or physical) and come to feel the peace in our lives that only He can give. The Maughan's are truly grateful for this most Wonderful Gift! Merry Christmas to ALL!
Monday, December 24, 2007
Monday, December 17, 2007
Happy Birthday Dan Weekend....!
We have been on the go all weekend with birthday celebration and Christmas parties... it all started on Friday, December 14th when Dan turned 50! We had a 'surprise' get together for Dan, but by the time the night was over, it wasn't too big of a surprise - first, we started out by putting our name in at the Cheesecake Factory for dinner. Since this is a new restaurant to Utah, we were told to check back in 2 - 2 1/2 hours for our party of 10. We decided to go check out the lights at Temple Square while we were waiting... so off we went!
Check out Dan and LaNae in front of the Salt Lake Temple (we were married there -- nice memories!)
Here is our granddaughter - Riley - isn't she a doll?!
A very nice Nativity Scene there...
After enjoying our adventure to Temple Square -- the Cheesecake Factory let us down -- after waiting over two and a half hours - they said it would be another 2 hours! I said "you are good... but not THAT good!". So off we went up to the University Marriott, where I WAS going to surprise Dan after dinner with - but we decided just to go there and have dinner at the hotel restaurant. It ended up being really nice... it was quiet and we had an entire section to ourselves and it made for a good time.
Everyone enjoying the dinner!
Riley getting her birthday card out for Grandpa Dan!
Riley showing off her good coloring job on the card... (good job - Riley!)
Dan showing off his new birthday hat and sweater!
All the girls love Dan!! Here is Heather and Angie giving Daddio a big kiss!
Dan and I had a relaxing stay at the Marriott and then spent Saturday doing a lot of shopping, and then up to Syracuse to Dan's sister Dorothy's house for a Christmas party. It was great! Dorothy had so much good food - and Dan - of course was in heaven... we got to see some of our extended family and had a great time there.
Sunday was our daughter-in-law's birthday (Heather J). We had a great get together at our house to celebrate her birthday. Now it is back to the work week - Dan to his therapy and me to Novell. Dan had a great day today - lots of therapy - speech therapy, then an hour of additional speech practice, then off to more therapy in the afternoon for 2 hours, and then a hour on the Quadraciser. We will give him 100% effort for the day - good job, Dan!
Check out Dan and LaNae in front of the Salt Lake Temple (we were married there -- nice memories!)
Here is our granddaughter - Riley - isn't she a doll?!
A very nice Nativity Scene there...
After enjoying our adventure to Temple Square -- the Cheesecake Factory let us down -- after waiting over two and a half hours - they said it would be another 2 hours! I said "you are good... but not THAT good!". So off we went up to the University Marriott, where I WAS going to surprise Dan after dinner with - but we decided just to go there and have dinner at the hotel restaurant. It ended up being really nice... it was quiet and we had an entire section to ourselves and it made for a good time.
Everyone enjoying the dinner!
Riley getting her birthday card out for Grandpa Dan!
Riley showing off her good coloring job on the card... (good job - Riley!)
Dan showing off his new birthday hat and sweater!
All the girls love Dan!! Here is Heather and Angie giving Daddio a big kiss!
Dan and I had a relaxing stay at the Marriott and then spent Saturday doing a lot of shopping, and then up to Syracuse to Dan's sister Dorothy's house for a Christmas party. It was great! Dorothy had so much good food - and Dan - of course was in heaven... we got to see some of our extended family and had a great time there.
Sunday was our daughter-in-law's birthday (Heather J). We had a great get together at our house to celebrate her birthday. Now it is back to the work week - Dan to his therapy and me to Novell. Dan had a great day today - lots of therapy - speech therapy, then an hour of additional speech practice, then off to more therapy in the afternoon for 2 hours, and then a hour on the Quadraciser. We will give him 100% effort for the day - good job, Dan!
Tuesday, December 11, 2007
Therapy reporting
OK, I might need some help on the logic here... when Dan was in China, he had the following therapy routine:
2 hrs Physical Therapy
1 hr Occupational Therapy
1 hr Speech Therapy
1 hr Traditional Chinese Medicine
That totals 5 hours per day of therapy. So each component would be worth 20 points and if you completed all therapies, it would then be 100 points or 100% effort.
Now that he is home, this is how we will do the scoring -- each hour of therapy is worth 20 points. Walking with the Up-n-Go and using the Quadriciser for one hour is also worth 20 points. This way I can see if we are giving 100% effort, or maybe even 120%... who knows. I will report a score to see how we are doing at helping Dan reach a full day of therapy. Also - if we don't do all three types of therapy - we will get dinged 20 points. We can't just focus on one type and not the others - we need to be holistic in our approach!
Today - this is what Dan did:
4 hrs Physical Therapy
Walking
Speech
Total points for the day from therapy = 120 (good job!!)
But-- we have to ding ourselves for not doing the OT, so now we are down 20 points to 100. 100% is good (but just think -- we could have had 140! ;-))
Looking forward to Friday - when Dan will begin the down hill slide.... he turns 50! Hoping you all are having a great day!
[Note: Dan just did an hour on the Quadriciser, so the total for today is 120% Great job... Dan!]
2 hrs Physical Therapy
1 hr Occupational Therapy
1 hr Speech Therapy
1 hr Traditional Chinese Medicine
That totals 5 hours per day of therapy. So each component would be worth 20 points and if you completed all therapies, it would then be 100 points or 100% effort.
Now that he is home, this is how we will do the scoring -- each hour of therapy is worth 20 points. Walking with the Up-n-Go and using the Quadriciser for one hour is also worth 20 points. This way I can see if we are giving 100% effort, or maybe even 120%... who knows. I will report a score to see how we are doing at helping Dan reach a full day of therapy. Also - if we don't do all three types of therapy - we will get dinged 20 points. We can't just focus on one type and not the others - we need to be holistic in our approach!
Today - this is what Dan did:
4 hrs Physical Therapy
Walking
Speech
Total points for the day from therapy = 120 (good job!!)
But-- we have to ding ourselves for not doing the OT, so now we are down 20 points to 100. 100% is good (but just think -- we could have had 140! ;-))
Looking forward to Friday - when Dan will begin the down hill slide.... he turns 50! Hoping you all are having a great day!
[Note: Dan just did an hour on the Quadriciser, so the total for today is 120% Great job... Dan!]
Monday, December 10, 2007
Dan's progress thus far! Great News!!
I just wanted everyone to know that I took a measurement tonight of Dan's lip movement capability. We took the last measurement of this ability on September 28th. This is a report of his progress-- !!
The open / close mouth exercise went from 48 to 60 times a minute .. this is a 25% increase (good job Dan!)
The pucker / smile exercise he was able to improve from 14 times a minute to 30 times a minute. This is over 100% improvement!!
Exciting measurement! I took this same measurement over two years ago when we were doing a Hyperbaric Oxygenation trial and that measurement was 46 for open/ close mouth and 19 on the pucker smile exercise, which was fairly close to the measurement taken in September. So the bottom line is that Dan did not make much improvement over a two year period, in fact in the measurement of pucker/ smile, he went down. Now just a little over two months, there is a significant improvement noted! I think things are happening here... :-)
I also read an article on the timing of using hyperbaric oxygenation (HBO) with a patient that has had a stem cell treatment. This explains the different phases of stem cell recovery in a very understandable way, and shows what happens during the subsequent months after the treatment.
Dan is now in the DIFFERENTION phase, and the new stem cells should have found their target, and have "moved in". They are now working on making the connections to the other neural cells around them. This is a critical time for good therapy, good food and good rest... (reminder - it is time for bed!).
Enjoy!
----------------------------------------------------------
-- In stemcellsafety@yahoogroups.com, "Kirshner Ross-Vaden"
After the injection the stem cells need time to migrate though the body and find their intended target. They find their target, such as the brain, by sensing certain chemicals released by damaged cells. Cells with damage have low levels of Oxygen and this state of Hypoxia prompts the cells to release these specific chemicals which are then sensed by the stem cells. Thus one would not want to do anything such as HBO just prior to the SCT or post SCT as this would increase the patients Oxygen levels and thus confuse the newly implanted stem cells. Migration and engraftment appear to transpire during the first 12 days following a treatment.
During the Engraftment period the stem cells which have now found their new home, begin to settle into the damaged tissue. One could consider the following analogy; they spent the first two weeks searching for a new home, moving in and setting up shop (as it were). After moving in they need a period during which they can unpack, figure out where to put their belongings, organize and simply get settled in. This would be the Engraftment phase which occurs most likely during the first two weeks following a treatment. Next comes the Differention phase. In keeping with the above analogy this would be the time that the Stem Cells would be looking for work near their new home. Figuring out what tasks need to be done around the new house and dividing up the daily chores. They now begin their work and this work takes a great deal of energy. This is the time to give them the support of extra Oxygen as this gives them the energy they need to get down to work and take care of business. This Differention phase begins once a stem cell has found a tissue niche and settled in. Thus the Differention phase may begin as early as 14 days post stem cell transplant.
Keep in mind that none of these time frames are set in stone; it is simply not that black and white. Where HBO comes into play each parent must decide for themselves what they feel is best. Researchers have said that they feel the treatment of the patient with HBO could be beneficial during the Differention phase but not before. Dr. Steenblock has stated that mild HBO may be of benefit post SCT and that this could safely begin at the top of the third month, a full two months post SCT.
Mild HBO could be defined as ATA's of 1.1 to 1.3 with less than 50% supplemental Oxygen given.
----------------------------------------------------------
The open / close mouth exercise went from 48 to 60 times a minute .. this is a 25% increase (good job Dan!)
The pucker / smile exercise he was able to improve from 14 times a minute to 30 times a minute. This is over 100% improvement!!
Exciting measurement! I took this same measurement over two years ago when we were doing a Hyperbaric Oxygenation trial and that measurement was 46 for open/ close mouth and 19 on the pucker smile exercise, which was fairly close to the measurement taken in September. So the bottom line is that Dan did not make much improvement over a two year period, in fact in the measurement of pucker/ smile, he went down. Now just a little over two months, there is a significant improvement noted! I think things are happening here... :-)
I also read an article on the timing of using hyperbaric oxygenation (HBO) with a patient that has had a stem cell treatment. This explains the different phases of stem cell recovery in a very understandable way, and shows what happens during the subsequent months after the treatment.
Dan is now in the DIFFERENTION phase, and the new stem cells should have found their target, and have "moved in". They are now working on making the connections to the other neural cells around them. This is a critical time for good therapy, good food and good rest... (reminder - it is time for bed!).
Enjoy!
----------------------------------------------------------
-- In stemcellsafety@yahoogroups.com, "Kirshner Ross-Vaden"
After the injection the stem cells need time to migrate though the body and find their intended target. They find their target, such as the brain, by sensing certain chemicals released by damaged cells. Cells with damage have low levels of Oxygen and this state of Hypoxia prompts the cells to release these specific chemicals which are then sensed by the stem cells. Thus one would not want to do anything such as HBO just prior to the SCT or post SCT as this would increase the patients Oxygen levels and thus confuse the newly implanted stem cells. Migration and engraftment appear to transpire during the first 12 days following a treatment.
During the Engraftment period the stem cells which have now found their new home, begin to settle into the damaged tissue. One could consider the following analogy; they spent the first two weeks searching for a new home, moving in and setting up shop (as it were). After moving in they need a period during which they can unpack, figure out where to put their belongings, organize and simply get settled in. This would be the Engraftment phase which occurs most likely during the first two weeks following a treatment. Next comes the Differention phase. In keeping with the above analogy this would be the time that the Stem Cells would be looking for work near their new home. Figuring out what tasks need to be done around the new house and dividing up the daily chores. They now begin their work and this work takes a great deal of energy. This is the time to give them the support of extra Oxygen as this gives them the energy they need to get down to work and take care of business. This Differention phase begins once a stem cell has found a tissue niche and settled in. Thus the Differention phase may begin as early as 14 days post stem cell transplant.
Keep in mind that none of these time frames are set in stone; it is simply not that black and white. Where HBO comes into play each parent must decide for themselves what they feel is best. Researchers have said that they feel the treatment of the patient with HBO could be beneficial during the Differention phase but not before. Dr. Steenblock has stated that mild HBO may be of benefit post SCT and that this could safely begin at the top of the third month, a full two months post SCT.
Mild HBO could be defined as ATA's of 1.1 to 1.3 with less than 50% supplemental Oxygen given.
----------------------------------------------------------
Saturday, December 8, 2007
More equipment for Dan!
We feel so blessed to be able to provide Dan a way to have the rigorous therapy that he needs to get the most benefit out of the stem cell treatment. He is doing a variety of therapies, and I think the diversity is good.
This is the new Quadriciser machine that we received on Thursday! We are excited to have this as Dan is able to get one to two hours a day on it (so far -- just getting started!). It is like having several therapists working on all four limbs - stretching and creating patterns of movement. This is good for his circulation, especially in his right side which has not had a lot of consistent movement and use.
A little different angle...
Here I am feeding him a 'Pepper Popper' - a green chili pepper breaded and filled with cheese... he can eat and quadricise at the same time! Pretty cool!
A speech therapist also came on Thursday to do an evaluation and see if he really needed therapy... I asked him how it went (I was at work when she came) and if the therapist thought he needed speech therapy. He looked at me like I was asking a pretty stupid question! Those of you that know Dan understand that the speech is probably the worst part of his disability. The ability to communicate is such a blessing... we should always be grateful for our ability to communicate freely and easily!
We now have the following therapies available to us:
1) Regular physical therapy (focuses on improving limb strength)
2) Intensive physical therapy (focuses on walking)
3) Quadriciser (limb movement and repetitive motion)
4) Up-n-go walker (partial weight bearing practice for walking)
5) Therapy exercise list from China (speech and OT exercises - the PT exercises are covered in the other session)
I am going to work on a way of tracking how much therapy Dan gets daily and report it on this blog. It will be good to see (and to be held accountable) for what we do on a daily basis. Since Dan is not in a full care setting, it is so important that we motivate ourselves to supplement the treatment that he gets outside of the home. We will soon be adding the speech therapy and hopefully at the beginning of the year we can get him a Saeboflex - which should help him increase the functionality of his right arm.
I took some time tonight to catch up on some of our friend's blogs from around the world. I am always so impressed by others and their dedication to find a solution for their loved one. It helps to know that I am not alone and I gain much strength from watching others. I am very thankful for my new friends and for this community of caring and sharing. I went for so many years not engaging in this community and it wasn't until our China trip that we discovered this new world - we are all pioneers in a new world of recovery and it is an awesome thing to know that you are not alone. We so miss our new friends from China -- all of the staff and other patients. We think of you often and are so grateful for our good care while in China and for the new friendships that we started. Let's keep in touch and work together to help each other succeed (and help those we love succeed!) Tonight I am very thankful to know all of you...
Tomorrow is Sunday - I hope where ever you are, and how ever you worship - that is is a great Sabbath Day. I am always grateful for Sundays and the opportunity to go to church and reflect on the past weeks experiences. This is my little way to show God that I am grateful for what I have been blessed with, and in return, He fills my vessel for another week of living! I know there are many great challenges that we all face, but I also know that no matter what the challenge is, that God is with us and will help us get through it. He may not take all of the pain away, but He will help us carry our burdens so that they seem light. Indeed, my burden has been light all of these years because I have had help from Above... and I am most thankful for that.
This is the new Quadriciser machine that we received on Thursday! We are excited to have this as Dan is able to get one to two hours a day on it (so far -- just getting started!). It is like having several therapists working on all four limbs - stretching and creating patterns of movement. This is good for his circulation, especially in his right side which has not had a lot of consistent movement and use.
A little different angle...
Here I am feeding him a 'Pepper Popper' - a green chili pepper breaded and filled with cheese... he can eat and quadricise at the same time! Pretty cool!
A speech therapist also came on Thursday to do an evaluation and see if he really needed therapy... I asked him how it went (I was at work when she came) and if the therapist thought he needed speech therapy. He looked at me like I was asking a pretty stupid question! Those of you that know Dan understand that the speech is probably the worst part of his disability. The ability to communicate is such a blessing... we should always be grateful for our ability to communicate freely and easily!
We now have the following therapies available to us:
1) Regular physical therapy (focuses on improving limb strength)
2) Intensive physical therapy (focuses on walking)
3) Quadriciser (limb movement and repetitive motion)
4) Up-n-go walker (partial weight bearing practice for walking)
5) Therapy exercise list from China (speech and OT exercises - the PT exercises are covered in the other session)
I am going to work on a way of tracking how much therapy Dan gets daily and report it on this blog. It will be good to see (and to be held accountable) for what we do on a daily basis. Since Dan is not in a full care setting, it is so important that we motivate ourselves to supplement the treatment that he gets outside of the home. We will soon be adding the speech therapy and hopefully at the beginning of the year we can get him a Saeboflex - which should help him increase the functionality of his right arm.
I took some time tonight to catch up on some of our friend's blogs from around the world. I am always so impressed by others and their dedication to find a solution for their loved one. It helps to know that I am not alone and I gain much strength from watching others. I am very thankful for my new friends and for this community of caring and sharing. I went for so many years not engaging in this community and it wasn't until our China trip that we discovered this new world - we are all pioneers in a new world of recovery and it is an awesome thing to know that you are not alone. We so miss our new friends from China -- all of the staff and other patients. We think of you often and are so grateful for our good care while in China and for the new friendships that we started. Let's keep in touch and work together to help each other succeed (and help those we love succeed!) Tonight I am very thankful to know all of you...
Tomorrow is Sunday - I hope where ever you are, and how ever you worship - that is is a great Sabbath Day. I am always grateful for Sundays and the opportunity to go to church and reflect on the past weeks experiences. This is my little way to show God that I am grateful for what I have been blessed with, and in return, He fills my vessel for another week of living! I know there are many great challenges that we all face, but I also know that no matter what the challenge is, that God is with us and will help us get through it. He may not take all of the pain away, but He will help us carry our burdens so that they seem light. Indeed, my burden has been light all of these years because I have had help from Above... and I am most thankful for that.
Tuesday, December 4, 2007
Now Dan Can....
I thought you might enjoy a few pictures from the intensive therapy center that Dan is going to (Now I Can). At first we wondered how this type of therapy would work for Dan. The center caters to a lot of cerebral palsy children and I was not sure that this type of therapy would work for him, but after going for a few times, we are very happy with the staff there and feel that they are pushing him very hard.
Here he is working in the 'spider cage' where they bungee cord him to the cage for stability and then have him practice getting up and down from a kneeling position.
Dan in "the cage" working on more therapy moves..
These are my favorite shots! Doesn't he look cute?! This is the Neurosuit that keeps his body in alignment and offers resistance to his therapy. Basically it makes it harder to do everything with the suit on, so when it is off, the movement comes easier.
I think he looks like Robin Hood -- he just needs a hat...!
Here he is working in the 'spider cage' where they bungee cord him to the cage for stability and then have him practice getting up and down from a kneeling position.
Dan in "the cage" working on more therapy moves..
These are my favorite shots! Doesn't he look cute?! This is the Neurosuit that keeps his body in alignment and offers resistance to his therapy. Basically it makes it harder to do everything with the suit on, so when it is off, the movement comes easier.
I think he looks like Robin Hood -- he just needs a hat...!
Monday, December 3, 2007
The therapy heats up!
Dan is back in the swing of things and is really starting to ramp up on his therapy. Today we got a new piece of equipment in to help Dan work on improving his walking. It is a walker type device that supports his weight and can provide a workout similar to a harness / treadmill apparatus that is often found in therapy centers. The goal is to practice walking in a partial weight bearing situation to see if we can improve gait patterns.
Nathan helped put it together and we practiced at home for a while, but soon felt the need to expand to a larger area -- so here we are on our first day of "Up and Go" walking practice. We worked out at the church for about an hour, and that was after Dan had spent time at home doing some exercises in addition to two hours of physical therapy today.
Check out that leg movement! Good job Dan!
We are also getting approval for a speech therapist to start coming into the home. They called today and let us know that we were approved on our insurance and will come for an evaluation later this week. We are also anticipating getting another piece of equipment called a Quadriciser this week as well - this will really be a great benefit to Dan as it will stimulate him and give him range of motion therapy in addition to repetitive patterning -- this will be like having several therapists work on Dan at the same time - but it is all automated! We are really excited to get this and start working on it.
Just a note in closing - the men in our family REALLY like egg nog. We had a nice family time last night, and the boys came over and found Dan's egg nog in the refrigerator... needless to say they wanted some. Dan had to raise his eyebrows when he heard they were into 'his' egg nog... so they decided to trick him (see picture).
No -- egg nog does NOT kill stem cells - but we did have a good laugh over it. Laughter is good for the soul -- and it helps the healing process as well. Dan got the last laugh, though -- he drank all the egg nog!
Nathan helped put it together and we practiced at home for a while, but soon felt the need to expand to a larger area -- so here we are on our first day of "Up and Go" walking practice. We worked out at the church for about an hour, and that was after Dan had spent time at home doing some exercises in addition to two hours of physical therapy today.
Check out that leg movement! Good job Dan!
We are also getting approval for a speech therapist to start coming into the home. They called today and let us know that we were approved on our insurance and will come for an evaluation later this week. We are also anticipating getting another piece of equipment called a Quadriciser this week as well - this will really be a great benefit to Dan as it will stimulate him and give him range of motion therapy in addition to repetitive patterning -- this will be like having several therapists work on Dan at the same time - but it is all automated! We are really excited to get this and start working on it.
Just a note in closing - the men in our family REALLY like egg nog. We had a nice family time last night, and the boys came over and found Dan's egg nog in the refrigerator... needless to say they wanted some. Dan had to raise his eyebrows when he heard they were into 'his' egg nog... so they decided to trick him (see picture).
No -- egg nog does NOT kill stem cells - but we did have a good laugh over it. Laughter is good for the soul -- and it helps the healing process as well. Dan got the last laugh, though -- he drank all the egg nog!
Sunday, December 2, 2007
Life's Second Chances...
Dan and I are very grateful for this 'second chance' for recovery. The journey this year has been amazing... first, we researched the technology and watched as others experienced it first hand. From this we became convinced that there is a possibility for gains to be made from the stem cell treatment. Our goal was to take a small gain and make a significant life improvement from it. What would a little better lip movement do for Dan and his ability to speak clearly? What would more function in his right arm and shoulders do? Of course, we also focus on his leg, correcting the hyper extension problem and the potential gains that can come in walking with a normal gait pattern. Over the years, Dan has focused on therapy to try and improve these areas, and he has been able to achieve strength in repetitive movement in therapy. This has not translated into an improved quickness in response, and no matter how hard we have tried, his response time is still labored and slow. It seems that everything we take for granted... the movements we make without thinking about it... these are the things that have been hard for Dan. If you were to compare the spinal column to a five lane freeway where signals travel, there is a section of the road that is reduced to one lane and the signals get jammed and have a delay getting through. Everything Dan does has to be done slowly -- and regardless of different therapy efforts, this has not improved dramatically over the years.
Now Dan has six million new neural cells floating around in his spinal fluid. The task is to get the new cells to connect the neurons above the injury site to the neurons below and create "more lanes of travel" for the signals. The body and the brain will need help in knowing where to establish these connections and the stimulation will come through therapy-- very intense therapy. There will also be a period of training where we take the gains made in therapy and translate them into increased functionality. We need to change years of habits and re-train the brain on what it does automatically - the part that it controls without thinking. This is where lots and lots of repetitive movement become so important.
So -- really -- our experience is now just beginning... we have had a great adventure to China. We met so many wonderful people and new friends. Dan received great treatment and therapy... and now is the time to create a plan at home that will take him from the gains made in the hospital to further improvement over the next several months. It is critical that he get rigorous and consistent therapy - and this has been the concern that has weighed so heavily on my mind. How can we provide this to Dan with limited resources and with a full work schedule as well?
This is where the blessings come in! When we first decided to come to China, we had no idea HOW we were going to make it all happen. There was so much money to raise and the expenses were not only related to China, but also to getting the right system in place for the next year to optimize the stem cell treatments. How were we going to do it all? We were literally weeks away from leaving for China and we still didn't know how we were going to pay for it all... what I have seen is nothing short of a miracle as doors were opened for us and the path made clear so that we could have this wonderful blessing in our lives. The Schenk family surprised us with a fund raiser at our family reunion. The Maughan and the Balls families and many good friends have also been very supportive and have blessed us with donations. Our friends at Nuskin came forward just weeks before the treatment with a wonderful donation that really secured our ability to make this happen for Dan.
Now that we have returned from China, the cost of future expenses - Dan's ongoing therapies and equipment costs have been an obstacle. From the generous hearts of Dan's Uncle Rex and Aunt Ruth and his Father another door has opened and we are able to provide Dan a second chance for recovery. We will be able to get the equipment we need to stimulate and create the repetitive movement that Dan needs, as well as be able to provide him the intensive therapy he desires. We are truly grateful - and overwhelmed - by the love and support we have been given. It is truly another miracle in the making... We thank you all for your support - for your prayers - and for granting us this great opportunity! This is just the beginning (of the end..) Stay tuned for more exciting updates and we begin to implement the "post-China" program!
Now Dan has six million new neural cells floating around in his spinal fluid. The task is to get the new cells to connect the neurons above the injury site to the neurons below and create "more lanes of travel" for the signals. The body and the brain will need help in knowing where to establish these connections and the stimulation will come through therapy-- very intense therapy. There will also be a period of training where we take the gains made in therapy and translate them into increased functionality. We need to change years of habits and re-train the brain on what it does automatically - the part that it controls without thinking. This is where lots and lots of repetitive movement become so important.
So -- really -- our experience is now just beginning... we have had a great adventure to China. We met so many wonderful people and new friends. Dan received great treatment and therapy... and now is the time to create a plan at home that will take him from the gains made in the hospital to further improvement over the next several months. It is critical that he get rigorous and consistent therapy - and this has been the concern that has weighed so heavily on my mind. How can we provide this to Dan with limited resources and with a full work schedule as well?
This is where the blessings come in! When we first decided to come to China, we had no idea HOW we were going to make it all happen. There was so much money to raise and the expenses were not only related to China, but also to getting the right system in place for the next year to optimize the stem cell treatments. How were we going to do it all? We were literally weeks away from leaving for China and we still didn't know how we were going to pay for it all... what I have seen is nothing short of a miracle as doors were opened for us and the path made clear so that we could have this wonderful blessing in our lives. The Schenk family surprised us with a fund raiser at our family reunion. The Maughan and the Balls families and many good friends have also been very supportive and have blessed us with donations. Our friends at Nuskin came forward just weeks before the treatment with a wonderful donation that really secured our ability to make this happen for Dan.
Now that we have returned from China, the cost of future expenses - Dan's ongoing therapies and equipment costs have been an obstacle. From the generous hearts of Dan's Uncle Rex and Aunt Ruth and his Father another door has opened and we are able to provide Dan a second chance for recovery. We will be able to get the equipment we need to stimulate and create the repetitive movement that Dan needs, as well as be able to provide him the intensive therapy he desires. We are truly grateful - and overwhelmed - by the love and support we have been given. It is truly another miracle in the making... We thank you all for your support - for your prayers - and for granting us this great opportunity! This is just the beginning (of the end..) Stay tuned for more exciting updates and we begin to implement the "post-China" program!
Tuesday, November 27, 2007
Intensive Therapy Has Begun.... :-)
Today Dan went to a new intensive therapy program called 'Now I Can". At first he joked that it looked like a day care center as the walls are brightly colored and they do cater to a lot of children, especially those with cerebral palsy. But after his first fours hours of intensive therapy, I think he was convinced that they really challenge you there. He said the therapy was harder there than in China - which says quite a lot, because they really did work him out hard in China! I will take pictures on Thursday and post them so you can see him in his suit!
They use a therapy developed in Russia that utilizes a NeuroSuit, which basically looks like a straight jacket with a bunch of bungee cords attached. The purpose of the suit is to provide the correct alignment for the body so that therapy can practice movements and prevent compensation (otherwise known as cheating...) This is when you use some of your good muscles to do a movement rather than forcing the muscles that should be doing it to do it (like bending your head over to reach your hand rather than raising your hand to reach your head...)
Now I Can Therapy
So -- today we are very pleased. Tomorrow we try another therapist that will supplement the Tues/ Thursday intensive therapy sessions. So far it looks like his schedule will be as follows:
Mon - Wed - Fri
Traditional physical therapy 1 hour
Supplement with in home therapy 3 hours
Speech therapy 1 hour
Walking 30 min to 1 hour
Tues - Thursday
Intensive physical therapy 4 hours
Supplement with in home therapy 2 hours
Walking 30 min to 1 hour
In home therapy will consist of the exercise list that we received from our therapists in China and working out on some equipment that will provide range of motion and walking pattern development. The walking will be done over at our church in the gym where he can use the walker that has partial weight bearing capability. He will need someone to go with him to do that. This is a proposed schedule - we are still waiting to get some of the equipment we need to round this out, but in a couple of weeks we should be down to a good routine.
Things are on the up and up -- I usually only get down when we aren't doing all we can to help Dan recover and I start having guilt complexes. The week of Thanksgiving was not a good therapy week due to the traveling, eating, jet lag and then subsequent sickness. Dan did do some therapy on Thanksgiving Day - as well as in the car traveling to Idaho. I am feeling much better today as he had a great therapy day!
They use a therapy developed in Russia that utilizes a NeuroSuit, which basically looks like a straight jacket with a bunch of bungee cords attached. The purpose of the suit is to provide the correct alignment for the body so that therapy can practice movements and prevent compensation (otherwise known as cheating...) This is when you use some of your good muscles to do a movement rather than forcing the muscles that should be doing it to do it (like bending your head over to reach your hand rather than raising your hand to reach your head...)
Now I Can Therapy
So -- today we are very pleased. Tomorrow we try another therapist that will supplement the Tues/ Thursday intensive therapy sessions. So far it looks like his schedule will be as follows:
Mon - Wed - Fri
Traditional physical therapy 1 hour
Supplement with in home therapy 3 hours
Speech therapy 1 hour
Walking 30 min to 1 hour
Tues - Thursday
Intensive physical therapy 4 hours
Supplement with in home therapy 2 hours
Walking 30 min to 1 hour
In home therapy will consist of the exercise list that we received from our therapists in China and working out on some equipment that will provide range of motion and walking pattern development. The walking will be done over at our church in the gym where he can use the walker that has partial weight bearing capability. He will need someone to go with him to do that. This is a proposed schedule - we are still waiting to get some of the equipment we need to round this out, but in a couple of weeks we should be down to a good routine.
Things are on the up and up -- I usually only get down when we aren't doing all we can to help Dan recover and I start having guilt complexes. The week of Thanksgiving was not a good therapy week due to the traveling, eating, jet lag and then subsequent sickness. Dan did do some therapy on Thanksgiving Day - as well as in the car traveling to Idaho. I am feeling much better today as he had a great therapy day!
Monday, November 26, 2007
Now for the HARD part!
OK - we are back in Utah and back to the old grind... my greatest fear is that Dan will not get the help he needs because I have other demands wanting my attention. I try to slice the pie to go around, but the reality is "there is only so much pie..." and when it is gone, it is gone!
We did get Dan down to visit a rehab physician today and were able to get some prescriptions for therapy. He also took a baseline so that he can follow Dan's progress over the next several months. Dan will start therapy tomorrow at the "Now I Can" center - this therapy style employs a therasuit, which looks like a straight jacket with bungee cords. Let's see him get out of that one! ;-)
We also have him set up to go to a regular style physical therapy on M-W-F. I am still working on getting a speech therapist lined up, and hope to get that taken care of tomorrow. We should have him back on a good schedule by the end of the week! We have been working on the exercises that were sent home from the hospital, but we can go through all of them in an hour (speech, physical and OT) so it seems like we either need to repeat them more, or add other therapy. I know that if we work hard, Dan will improve, but it is up to us to do all that that we can do, and then put our trust in God to fill in the rest.
I admit that I have been a little discouraged because the progress seems so slow and because we haven't been as organized as we would have liked the last few days. I determined that is is all right to have these feelings as long as they don't deter us from our goal. We are the only ones that can choose our destiny, and that means we can choose to rise above discouragement and move forward. It is not what we feel that matters - but what we do that counts. But then the haunting reminder comes that we don't get paid in life for our passions - we only get paid on our results. We must DO those things that will bring us the RESULTS that we are so passionate about and we must FOCUS with laser sharpness until we achieve them! That is the task that now lays in front of us -- and thus the title for today's blog. The easy part was going to China and getting the stem cell treatment - now we have to do the hard part!
We did get Dan down to visit a rehab physician today and were able to get some prescriptions for therapy. He also took a baseline so that he can follow Dan's progress over the next several months. Dan will start therapy tomorrow at the "Now I Can" center - this therapy style employs a therasuit, which looks like a straight jacket with bungee cords. Let's see him get out of that one! ;-)
We also have him set up to go to a regular style physical therapy on M-W-F. I am still working on getting a speech therapist lined up, and hope to get that taken care of tomorrow. We should have him back on a good schedule by the end of the week! We have been working on the exercises that were sent home from the hospital, but we can go through all of them in an hour (speech, physical and OT) so it seems like we either need to repeat them more, or add other therapy. I know that if we work hard, Dan will improve, but it is up to us to do all that that we can do, and then put our trust in God to fill in the rest.
I admit that I have been a little discouraged because the progress seems so slow and because we haven't been as organized as we would have liked the last few days. I determined that is is all right to have these feelings as long as they don't deter us from our goal. We are the only ones that can choose our destiny, and that means we can choose to rise above discouragement and move forward. It is not what we feel that matters - but what we do that counts. But then the haunting reminder comes that we don't get paid in life for our passions - we only get paid on our results. We must DO those things that will bring us the RESULTS that we are so passionate about and we must FOCUS with laser sharpness until we achieve them! That is the task that now lays in front of us -- and thus the title for today's blog. The easy part was going to China and getting the stem cell treatment - now we have to do the hard part!
Sunday, November 25, 2007
Happy Thanksgiving Weekend!
We have much to be thankful for at this time of year -- good family and friends that have supported us in our quest for Dan's recovery, good children that have joined with us in supporting Dan, and a wonderful Mother that helped run the house while I was out of the country. We really feel blessed at this time....!!
We went up to Idaho and had a delicious Thanksgiving dinner at my Mom's house - it was really good. Dan and I were not a lot of help, however, as we were recovering from jet lag-- and then I came down with a pretty bad cold that I have been trying to shake all weekend. I guess my lungs were not used to the clean Idaho air! -- the shock of not having good ole' Beijing pollution was too much!
We think of our friends in China and we miss them already! We had a great time and met a lot of phenomenal people that have touched our lives for good. We wish them all the best and pray for their recoveries as well! May God bless you all.
We went up to Idaho and had a delicious Thanksgiving dinner at my Mom's house - it was really good. Dan and I were not a lot of help, however, as we were recovering from jet lag-- and then I came down with a pretty bad cold that I have been trying to shake all weekend. I guess my lungs were not used to the clean Idaho air! -- the shock of not having good ole' Beijing pollution was too much!
We think of our friends in China and we miss them already! We had a great time and met a lot of phenomenal people that have touched our lives for good. We wish them all the best and pray for their recoveries as well! May God bless you all.
Tuesday, November 20, 2007
We are HOME!
Just wanted everyone to know we made it home safe and sound! The flight was long.... to say the least, but that is no problem. We caught our second wind after arriving home and were able to greet friends and family again. Dan's sister Dorothy and her family, and his cousin Leslie, both came to the airport to greet us! Of course Angie was there to pick us up and we were glad to be here!
Sharing some pictures of our day's journey....
Taking the IV out!! If you have ever had an IV straight for 8 plus weeks - you will know that this is a momentous occasion! Dan is free!!
Getting a little pre-flight nourishment on the plane! We are ready to rock...!
The airport welcome home committee! Wasn't that a fun surprise?!
Dan's sister and family (Angie (our daughter), Jordy, Jason, Dax, Dan, LaNae, Dorothy and Tony!)
Almost the same crew - but includes Leslie, Dan's cousin (had to take turns taking pictures!)
Welcome home to Mom and Dad! Thanks!! You sure made us feel special!
Sharing some pictures of our day's journey....
Taking the IV out!! If you have ever had an IV straight for 8 plus weeks - you will know that this is a momentous occasion! Dan is free!!
Getting a little pre-flight nourishment on the plane! We are ready to rock...!
The airport welcome home committee! Wasn't that a fun surprise?!
Dan's sister and family (Angie (our daughter), Jordy, Jason, Dax, Dan, LaNae, Dorothy and Tony!)
Almost the same crew - but includes Leslie, Dan's cousin (had to take turns taking pictures!)
Welcome home to Mom and Dad! Thanks!! You sure made us feel special!
Open House Tonight!
Hey everyone, it's Kallie. Dan and LaNae are on their way home right now and will be back late this afternoon. To celebrate, we're having an open house tonight from 6:30 to 8:00 at their house. (If you need directions, email me kallie-marie@hotmail.com)
Come welcome them home with us!!
We'll see you then!
Come welcome them home with us!!
We'll see you then!
Monday, November 19, 2007
China Days 58-60: The Last Hurrah!
What a busy time we have had the last few days! On Sunday we went to church and said our good-byes to our friends there – then over to our favorite home teachers home for one last scrumptious meal – and then back to the hospital to visit with our dear friends here. It was a full day --
Monday – the last big day at the hospital had lots to do with tying up loose ends... get the last therapy routines and instructions, give away all of our “See Dan shirts” to the wonderful staff here, take lots of pictures, go do just a little more shopping, come back – take down all of the pictures in the room :-( and then spend the evening with friends from the hospital and Nuskin. We went out to Dan's favorite spot here – Grandma's Kitchen – a quaint little American food restaurant. He of course had pancakes and omlette for dinner and I enjoyed a Philly steak and cheese.
Truly the thing we will miss the most are the dear, wonderful people that we have met here. There are so many good people and it is nice to be with others that are also striving for recovery. We are able to relate in a way that others can't because we have all experienced similar challenges in life. It is a place to pull together and bond and strengthen each other. We will miss the close associations and friendships that we have made here, but we know that we are all just an email away – we look forward to keeping in touch and following each others progress as time goes on.
I have included tomorrows blog today – the BIG DAY 60! We will be up in the morning, finish up packing and head off to the airport sometime between 9-10:00. Then it is that weird flight home that leaves at 1:40 pm but gets into San Francisco at 8:00 am the same day-- how does that work again?! It makes for a very short night/ day. Then off to Salt Lake City and we plan to arrive around 3:40 pm. Keep us in your prayers for a safe flight home – and we look forward to seeing you soon! :-)
(For some reason - I can't post pictures any more - I must have run out of space... I need to check into this when we get home - until then - visualize! ;-))
Monday – the last big day at the hospital had lots to do with tying up loose ends... get the last therapy routines and instructions, give away all of our “See Dan shirts” to the wonderful staff here, take lots of pictures, go do just a little more shopping, come back – take down all of the pictures in the room :-( and then spend the evening with friends from the hospital and Nuskin. We went out to Dan's favorite spot here – Grandma's Kitchen – a quaint little American food restaurant. He of course had pancakes and omlette for dinner and I enjoyed a Philly steak and cheese.
Truly the thing we will miss the most are the dear, wonderful people that we have met here. There are so many good people and it is nice to be with others that are also striving for recovery. We are able to relate in a way that others can't because we have all experienced similar challenges in life. It is a place to pull together and bond and strengthen each other. We will miss the close associations and friendships that we have made here, but we know that we are all just an email away – we look forward to keeping in touch and following each others progress as time goes on.
I have included tomorrows blog today – the BIG DAY 60! We will be up in the morning, finish up packing and head off to the airport sometime between 9-10:00. Then it is that weird flight home that leaves at 1:40 pm but gets into San Francisco at 8:00 am the same day-- how does that work again?! It makes for a very short night/ day. Then off to Salt Lake City and we plan to arrive around 3:40 pm. Keep us in your prayers for a safe flight home – and we look forward to seeing you soon! :-)
(For some reason - I can't post pictures any more - I must have run out of space... I need to check into this when we get home - until then - visualize! ;-))
Saturday, November 17, 2007
China Day 57: November 17th
True to my last blog post – I went shopping today! Just had to take in some more of that fun Chinese tradition! I am still probably not getting the bargain that I should, but it is certainly better prices than in the USA with the exchange rate being about 7.5 RMB to 1 USD. Dan stayed back at the hospital and dutifully absorbed the 6+ bags of IV solution while I was out and about.
Tonight we have had a quiet evening, we stayed in and are working at eating the remaining items in our refrigerator and working to get organized to come home. It has been such a wonderful experience for us to be here.... we have met so many wonderful people and in some respects we are very sad to leave all of our new friends... but it is back to the grind and daily routine when we get back home.
We have Dan scheduled to start therapy on Tuesday, November 27th with an intensive therapy center. He will work on therapy there two days a week for four hours a day. We also ordered a piece of equipment that will help with partial weight bearing so that he can work on his walking therapy as well. This is similar to the harness and treadmill that you have seen him work out on in the therapy videos, but is a 'poor mans' approach to get some equipment to help him simulate this type of therapy at home. The device is kind of like a walker, but has a harness built into it to offload his full weight. It should give him and environment similar to walking in a swimming pool, or aquatic therapy. We are really trying to focus on improving his weight transfer and patterning of walking with this exercise as well as practice walking without the leg brace to see if we can get his leg strong enough (and responsive enough) so it doesn't hyperextend when he walks. We so take walking for granted... it is such a science to re-learn to walk! Proper weight shifting, heel-toe foot placement and teaching the brain the rhythm of it all so that it can do it automatically – pretty hard stuff to do when your brain doesn't know how to do it anymore!
Dan also wants to get a piece of equipment called a quadriciser – this he could use several hours a day and would simulate a therapist doing range of motion exercises with him as well as simulate the rhythmic pattern of walking. It is quite pricey, however, so we will have to see about that one. We have a video coming and have some people to call and follow up with to see the impact on other users... so still checking this one out.
The other item that we are hot to obtain is called a Saeboflex – we will have to wait until we can get into an Occupational Therapist at home and get an evaluation on this. This should allow him to have his right hand in an extended position which would actually allow for functional use! We are hopeful that functional use of his right arm with the device on will also allow him to improve so that he could use it without the device. The recovery videos from this product are amazing to watch and progress has been tracked on patients for up to a year with amazing results. We want to be one of their success stories!
Basically the goal is to have a schedule that Dan can work with at home and in conjunction with professional therapists to give him 5-6 hours a day of therapy. My fear is that I will get home and start working and my focus will change and we will not meet our goals – please harass us and help us so that we transition successfully from the hospital to a great therapy routine at home! We need your help on this...
Tonight we have had a quiet evening, we stayed in and are working at eating the remaining items in our refrigerator and working to get organized to come home. It has been such a wonderful experience for us to be here.... we have met so many wonderful people and in some respects we are very sad to leave all of our new friends... but it is back to the grind and daily routine when we get back home.
We have Dan scheduled to start therapy on Tuesday, November 27th with an intensive therapy center. He will work on therapy there two days a week for four hours a day. We also ordered a piece of equipment that will help with partial weight bearing so that he can work on his walking therapy as well. This is similar to the harness and treadmill that you have seen him work out on in the therapy videos, but is a 'poor mans' approach to get some equipment to help him simulate this type of therapy at home. The device is kind of like a walker, but has a harness built into it to offload his full weight. It should give him and environment similar to walking in a swimming pool, or aquatic therapy. We are really trying to focus on improving his weight transfer and patterning of walking with this exercise as well as practice walking without the leg brace to see if we can get his leg strong enough (and responsive enough) so it doesn't hyperextend when he walks. We so take walking for granted... it is such a science to re-learn to walk! Proper weight shifting, heel-toe foot placement and teaching the brain the rhythm of it all so that it can do it automatically – pretty hard stuff to do when your brain doesn't know how to do it anymore!
Dan also wants to get a piece of equipment called a quadriciser – this he could use several hours a day and would simulate a therapist doing range of motion exercises with him as well as simulate the rhythmic pattern of walking. It is quite pricey, however, so we will have to see about that one. We have a video coming and have some people to call and follow up with to see the impact on other users... so still checking this one out.
The other item that we are hot to obtain is called a Saeboflex – we will have to wait until we can get into an Occupational Therapist at home and get an evaluation on this. This should allow him to have his right hand in an extended position which would actually allow for functional use! We are hopeful that functional use of his right arm with the device on will also allow him to improve so that he could use it without the device. The recovery videos from this product are amazing to watch and progress has been tracked on patients for up to a year with amazing results. We want to be one of their success stories!
Basically the goal is to have a schedule that Dan can work with at home and in conjunction with professional therapists to give him 5-6 hours a day of therapy. My fear is that I will get home and start working and my focus will change and we will not meet our goals – please harass us and help us so that we transition successfully from the hospital to a great therapy routine at home! We need your help on this...
Friday, November 16, 2007
China Days 55-56: Only 2 more China shopping days left!
OK – the really big news is that I only have 2 more shopping days left until we leave for home! I have really got to get crackin' if I am to get in all in before then... ;-) (just kidding!)
The real deal is that everything is just great here for us. We are starting to wind down the treatment and preparations are being made for our return to the USA. It is kind of a happy-sad situation as we are totally excited to be coming home, but sad to leave this beautiful country and all the wonderful people that we have met here.... from the hospital, to our church and our Nuskin friends, we feel like we have had a great experience here and would love to come back.
Here is a picture of a nurse that we missed in the group picture – her name is Shirley, and she is awesome! (just like all the rest!)
Today was the last doctor's visit with the 'Directors'. It is always good to have them come and evaluate and answer questions. We are thankful for the good care that we have received here in China – they have a great team here. We received our discharge papers today and all of the medications that Dan will need to continue to take over the next 3 months. We will also be receiving a list of therapies as recommended for speech, OT and PT.
Tonight we went out with Gary, Lorraine, Monnie, Glenn, Jeremy and little Blake for a great steak dinner – we had a really good time, and it WAS a really good steak!
Blake is our little sweetheart – he has Batten's disease – a hereditary condition that impacts children. He was growing normal and strong as a toddler and has digressed to a state where he is now blind and has a feeding tube. They brought him to China for treatment to try and extend his life until a cure can be found... what an amazing family! You can learn more about Blake at www.blakespurpose.org.
The real deal is that everything is just great here for us. We are starting to wind down the treatment and preparations are being made for our return to the USA. It is kind of a happy-sad situation as we are totally excited to be coming home, but sad to leave this beautiful country and all the wonderful people that we have met here.... from the hospital, to our church and our Nuskin friends, we feel like we have had a great experience here and would love to come back.
Here is a picture of a nurse that we missed in the group picture – her name is Shirley, and she is awesome! (just like all the rest!)
Today was the last doctor's visit with the 'Directors'. It is always good to have them come and evaluate and answer questions. We are thankful for the good care that we have received here in China – they have a great team here. We received our discharge papers today and all of the medications that Dan will need to continue to take over the next 3 months. We will also be receiving a list of therapies as recommended for speech, OT and PT.
Tonight we went out with Gary, Lorraine, Monnie, Glenn, Jeremy and little Blake for a great steak dinner – we had a really good time, and it WAS a really good steak!
Blake is our little sweetheart – he has Batten's disease – a hereditary condition that impacts children. He was growing normal and strong as a toddler and has digressed to a state where he is now blind and has a feeding tube. They brought him to China for treatment to try and extend his life until a cure can be found... what an amazing family! You can learn more about Blake at www.blakespurpose.org.
Wednesday, November 14, 2007
China Days 54: Last stem cell treatment & therapy plans
Many thanks to those who have reached out to Dan after the passing of his dear Grandma Schenk. Dan appreciates the comments and emails of support and while he misses them dearly, is happy that his Mother, Grandma and Grandpa Schenk are all cheering him on from the other side of the veil. He loved them all so very much!
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Today was Dan's last stem cell treatment! Wahoo!! I think they did it in record time today – about eleven minutes from the time he left until he returned. Here is a picture of him getting on the operating gerny and off he went!
This is what it is like for six hours after the stem cell treatment - lay flat on your back, no turning to the side, no pillow for six straight hours! Truly an endurance test for only the hardiest of souls!
You are probably wondering how Dan eats during the six hours on his back -- well -- let us demonstrate this for you! First, line all of the food up on a paper towel on Dan's chest...
Next - let Dan feed himself! He did quite well with the Doritos, Snickers and Kit Kats that we gave him (yes - we too are excellent caregivers! This was Renee's idea from next door and I thought it worked out quite nicely!)
Just so you won't worry too much - I also fed him an excellent breakfast before the treatment - Chinese congi with bananas and raisins, USA oatmeal with the same fruit, ruby red grapefruit juice, raisin bread and banana bread! Then for lunch he did have some juice and a meal replacement soup packet from Pharmanex...
He has done very well today - no temperature and he feels good! We are now ready for Therapy 102 to begin!
This is what I have put together thus far on the therapy that we would like Dan to have when he gets home. It will need to be a combination of home based workouts combined with therapy outside the home. I switched insurance providers at work and signed up for a plan that offers more therapy visits for next year, so we will utilize my current policy this year and then switch over in January to Aetna. They will most likely offer a program that is 3 sessions a week, and so we will need to augment this as we would like to continue with a five to six hour program at least five days a week. That is what we are receiving now....
These are some of the things that I am hoping to find in a therapy treatment facility:
Gait training equipment:
LiteGait
Robomedica
Gaitrite
Right arm and hand therapy:
Seaboflex
Speech and swallowing therapy:
Vital Stim
Another option that we are looking into is Now I Can - an intensive, four hour a day program. This is quite costly - from $6000 to $8000 per session (3-4 weeks per session). We might try to augment using this program, but they do not bill insurance and so I would have to request reimbursement and I am not sure it would be covered.
Now I Can
We are looking at the following to help out with our home based program:
Seaboflex
Easy Walking Up and Go
Quadriciser
The important thing will be -- therapy every day, work hard in each area as this will help the brain help the new stem cells find the proper places to heal, bridge the damaged areas and create the new pathways that Dan needs.
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Today was Dan's last stem cell treatment! Wahoo!! I think they did it in record time today – about eleven minutes from the time he left until he returned. Here is a picture of him getting on the operating gerny and off he went!
This is what it is like for six hours after the stem cell treatment - lay flat on your back, no turning to the side, no pillow for six straight hours! Truly an endurance test for only the hardiest of souls!
You are probably wondering how Dan eats during the six hours on his back -- well -- let us demonstrate this for you! First, line all of the food up on a paper towel on Dan's chest...
Next - let Dan feed himself! He did quite well with the Doritos, Snickers and Kit Kats that we gave him (yes - we too are excellent caregivers! This was Renee's idea from next door and I thought it worked out quite nicely!)
Just so you won't worry too much - I also fed him an excellent breakfast before the treatment - Chinese congi with bananas and raisins, USA oatmeal with the same fruit, ruby red grapefruit juice, raisin bread and banana bread! Then for lunch he did have some juice and a meal replacement soup packet from Pharmanex...
He has done very well today - no temperature and he feels good! We are now ready for Therapy 102 to begin!
This is what I have put together thus far on the therapy that we would like Dan to have when he gets home. It will need to be a combination of home based workouts combined with therapy outside the home. I switched insurance providers at work and signed up for a plan that offers more therapy visits for next year, so we will utilize my current policy this year and then switch over in January to Aetna. They will most likely offer a program that is 3 sessions a week, and so we will need to augment this as we would like to continue with a five to six hour program at least five days a week. That is what we are receiving now....
These are some of the things that I am hoping to find in a therapy treatment facility:
Gait training equipment:
LiteGait
Robomedica
Gaitrite
Right arm and hand therapy:
Seaboflex
Speech and swallowing therapy:
Vital Stim
Another option that we are looking into is Now I Can - an intensive, four hour a day program. This is quite costly - from $6000 to $8000 per session (3-4 weeks per session). We might try to augment using this program, but they do not bill insurance and so I would have to request reimbursement and I am not sure it would be covered.
Now I Can
We are looking at the following to help out with our home based program:
Seaboflex
Easy Walking Up and Go
Quadriciser
The important thing will be -- therapy every day, work hard in each area as this will help the brain help the new stem cells find the proper places to heal, bridge the damaged areas and create the new pathways that Dan needs.
Tuesday, November 13, 2007
China Days 52-53: Therapy, shopping and more stem cells...
Monday was a busy day – Dan spent the day in therapy and LaNae went exploring with some friends to a few of the shopping malls in China. The thinking is – get your Christmas shopping done in China where it is 1/7 the cost! We had a good time, but I still need to get better at bargaining.... that is the shopping way of the Chinese. “How much will you pay, Lady... Lady, I will give it to you for this price... really good price... come on Lady!” That is what you hear all day long when you try to shop! Not much opportunity to just browse and select because if you stop – you get sucked in....
In the evening we went out to a great restaurant – Grandma's Kitchen. It is REAL American food with hamburgers, french fries, milkshakes, pancakes and apple pie ala mode. It was really good.
Today Dan went to therapy and I went out to Wal-mart with some new people that just arrived from Australia. (Nicole and Maria) We had a good time, and I picked up some groceries that we needed. It is always good to have someone to ride with in the cab and it was great to get to know Nicole and Maria. They are here with Nichole's husband who has MS.
Tomorrow is the BIG #3 stem cell treatment for Dan! This will be the last treatment before we return home next Tuesday. They are starting to make the winding up preparations for us here – today they came with a list of medications that they want Dan to take after he returns home... so the preparations are beginning to happen for our return! Day 60 is the big return home day – and so as you can see the countdown has begun. It is amazing to me that we are about ready to come home – in so many ways – we would like to stay longer – the therapy, the people, the country – it has been an amazing experience!
Our wonderful nurses! (L to R) Shirleen, Irene, Tina and Jingjing
Dan is surrounded by all of this great nurses.... aren't they beautiful?!
(L to R) Tina, Sunny, Ester, Dan, Jingjing, Caca, Linda and Irene
Saying "Good-bye" to some great new friends... wishing you the best on your recoveries!
Judy (Australia) left on Monday and Carlos and Elsa (Argentina) are leaving tomorrow. It is so neat to get to know all of these great people!
This is Diana, Judy, Lorraine and Judy's caregiver. Wishing Judy the best - she is a great lady!
Dan with Carlos from Argentina - Carlos has ALS (Lou Gehrig's disease)
LaNae and Dan with Carlos and Elsa
We had a birthday get together for three of our friends here at the hospital - Metin from Turkey, Gary from Pennsylvania and Stephen from Florida.
In the evening we went out to a great restaurant – Grandma's Kitchen. It is REAL American food with hamburgers, french fries, milkshakes, pancakes and apple pie ala mode. It was really good.
Today Dan went to therapy and I went out to Wal-mart with some new people that just arrived from Australia. (Nicole and Maria) We had a good time, and I picked up some groceries that we needed. It is always good to have someone to ride with in the cab and it was great to get to know Nicole and Maria. They are here with Nichole's husband who has MS.
Tomorrow is the BIG #3 stem cell treatment for Dan! This will be the last treatment before we return home next Tuesday. They are starting to make the winding up preparations for us here – today they came with a list of medications that they want Dan to take after he returns home... so the preparations are beginning to happen for our return! Day 60 is the big return home day – and so as you can see the countdown has begun. It is amazing to me that we are about ready to come home – in so many ways – we would like to stay longer – the therapy, the people, the country – it has been an amazing experience!
Our wonderful nurses! (L to R) Shirleen, Irene, Tina and Jingjing
Dan is surrounded by all of this great nurses.... aren't they beautiful?!
(L to R) Tina, Sunny, Ester, Dan, Jingjing, Caca, Linda and Irene
Saying "Good-bye" to some great new friends... wishing you the best on your recoveries!
Judy (Australia) left on Monday and Carlos and Elsa (Argentina) are leaving tomorrow. It is so neat to get to know all of these great people!
This is Diana, Judy, Lorraine and Judy's caregiver. Wishing Judy the best - she is a great lady!
Dan with Carlos from Argentina - Carlos has ALS (Lou Gehrig's disease)
LaNae and Dan with Carlos and Elsa
We had a birthday get together for three of our friends here at the hospital - Metin from Turkey, Gary from Pennsylvania and Stephen from Florida.
Sunday, November 11, 2007
China Day 51: Another Great Day...
Today was AWESOME! We had a wonderful day at church today – we had some special guests visit us in our little Branch and it was a really neat experience. The take-aways from church today are that we need to be willing to do the hard things in life and how this will ultimately help us to grow and become more like our Savior. Our afflictions can be consecrated for our gain...(2 Nephi 2:1-2). I needed to hear this because sometimes we pray that our pain and suffering will be taken away and that life will be easy for us... but sometimes it is hard, and that is ok. I am going to quote Missy Ashton (mother of Jeremy – who came over here to China not long ago with Jeremy to receive stem cell treatment) “What's wrong with hard?” ...that is what she says – and I think it is a good quote to keep in mind. Hard things help us to grow, and if we didn't have hard things in our lives, we could not reach our potential.
As we look to the future in hopes of Dan's recovery, we believe that we must do our part if we are to expect the blessings from Heaven. We must 'do the hard things' like daily, repetitive therapy and not get distracted or give up. It will take time and a lot of hard work on Dan's part to see the benefits from this amazing treatment that he is getting, We are committed to do our part, and we appreciate all of the support that is offered through prayers, comments, emails and phone calls. When we are discouraged and the progress seems slow, we remember all the people that are behind us, cheering us on... and that gives us the courage and strength to move forward! Thank you all for your support – it really does make a difference for us!!
Here is a picture of the building that where we go to church – it is called the 'Golden Tower'.
We went over to our hometeachers (Mac and Janet Coleman) for dinner again today – they are so great – we get a FABULOUS meal there every week! Today they invited the young, single adults over as well – and I think there was about 34 people there total! As you can see the food was great!
Mac and Janet Coleman – Mac is dressed in his military uniform as today is Armistice Day / Veteran's Day. He reminded us that on the 11th hour of the 11th day of the 11th month the agreement was signed to end World War 1. As we appreciate our freedoms and all that we have been given, we should take some time to remember that we have this because a soldier fought for us to have this blessing. We should take a moment to remember and honor those soldiers and appreciate all that we have because of them! Thanks, Mac, for reminding us of how lucky we really are!
As we look to the future in hopes of Dan's recovery, we believe that we must do our part if we are to expect the blessings from Heaven. We must 'do the hard things' like daily, repetitive therapy and not get distracted or give up. It will take time and a lot of hard work on Dan's part to see the benefits from this amazing treatment that he is getting, We are committed to do our part, and we appreciate all of the support that is offered through prayers, comments, emails and phone calls. When we are discouraged and the progress seems slow, we remember all the people that are behind us, cheering us on... and that gives us the courage and strength to move forward! Thank you all for your support – it really does make a difference for us!!
Here is a picture of the building that where we go to church – it is called the 'Golden Tower'.
We went over to our hometeachers (Mac and Janet Coleman) for dinner again today – they are so great – we get a FABULOUS meal there every week! Today they invited the young, single adults over as well – and I think there was about 34 people there total! As you can see the food was great!
Mac and Janet Coleman – Mac is dressed in his military uniform as today is Armistice Day / Veteran's Day. He reminded us that on the 11th hour of the 11th day of the 11th month the agreement was signed to end World War 1. As we appreciate our freedoms and all that we have been given, we should take some time to remember that we have this because a soldier fought for us to have this blessing. We should take a moment to remember and honor those soldiers and appreciate all that we have because of them! Thanks, Mac, for reminding us of how lucky we really are!
Saturday, November 10, 2007
China Day 50: Beautiful Beijing
Yesterday the 'directors' came and gave Dan a good checkup. I really like them – they always take the time to answer the questions that I have... which is usually a lot! As we talked about what needs to happen in the healing process, they helped me to understand that the damaged area needs to be 'bridged' so that the neurons from the upper brain area can reconnect with the neurons in the lower spinal cord. It was good to have them come and help clarify the healing process for me.
Earlier in the week we went to dinner with Renee, Ty, Monnie and Glenn to a really good restaurant – the best I have been to since being here. It was the Beijing DaDong Roast Duck Restaurant, and the food was absolutely fabulous – and more than tasting good, the presentation of each dish was just as amazing...
Monnie is getting ready to eat a shrimp delicacy! They don't waste any parts of the fish or animal over here... so if you look closely, you will see the little eyes of the shrimp staring up at Monnie! It was pretty funny to watch the expression on her face! :-) Glenn and Monnie are from South Carolina, and they are here to treat Glenn's Parkinson's disease.
Some of the amazing presentations of the food! It tasted as good as it looks!
The roasting of the duck... we were allowed to go back into the kitchen and select the duck that we wanted... it was pretty cool to see how they cooked them over an open fire.
The carving of the duck....
Renee and Diana enjoying dessert....
To top off the evening... some refreshing Doublemint gum!
Beijing is an amazing city and China is a wonderful country. We are so fortunate to be able to get out on the weekend and take in some of the sites of this amazing place! Today we went to the Summer Palace with Renee, Ty, Monnie and Glenn – it was a wonderful experience! This is the summer palace of the emporer and it was absolutely beautiful!
The beautiful bridge and view across the lake to the Summer Palace...
The palace from across the lake...
The ferry and the beautiful surroundings as we crossed the lake!
A couple of shots of Dan at the base of the palace... one on the walkway out side and the other on a little bridge that leads up to the palace. Dan didn't venture up all the steps to climb to the top of this one -- but it was pretty cool here as well! (over 200 steps)
The view from the top of the palace!
The main palace - up close!
Saying 'Good-bye' to the beautiful Summer Palace!
Earlier in the week we went to dinner with Renee, Ty, Monnie and Glenn to a really good restaurant – the best I have been to since being here. It was the Beijing DaDong Roast Duck Restaurant, and the food was absolutely fabulous – and more than tasting good, the presentation of each dish was just as amazing...
Monnie is getting ready to eat a shrimp delicacy! They don't waste any parts of the fish or animal over here... so if you look closely, you will see the little eyes of the shrimp staring up at Monnie! It was pretty funny to watch the expression on her face! :-) Glenn and Monnie are from South Carolina, and they are here to treat Glenn's Parkinson's disease.
Some of the amazing presentations of the food! It tasted as good as it looks!
The roasting of the duck... we were allowed to go back into the kitchen and select the duck that we wanted... it was pretty cool to see how they cooked them over an open fire.
The carving of the duck....
Renee and Diana enjoying dessert....
To top off the evening... some refreshing Doublemint gum!
Beijing is an amazing city and China is a wonderful country. We are so fortunate to be able to get out on the weekend and take in some of the sites of this amazing place! Today we went to the Summer Palace with Renee, Ty, Monnie and Glenn – it was a wonderful experience! This is the summer palace of the emporer and it was absolutely beautiful!
The beautiful bridge and view across the lake to the Summer Palace...
The palace from across the lake...
The ferry and the beautiful surroundings as we crossed the lake!
A couple of shots of Dan at the base of the palace... one on the walkway out side and the other on a little bridge that leads up to the palace. Dan didn't venture up all the steps to climb to the top of this one -- but it was pretty cool here as well! (over 200 steps)
The view from the top of the palace!
The main palace - up close!
Saying 'Good-bye' to the beautiful Summer Palace!
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