Monday, December 24, 2007

Merry Christmas from the Maughans!!

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 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!

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

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!).


-- In, "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.

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...!

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!

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!