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!

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!

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.

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!

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!

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! ;-))

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...

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.

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!


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:

Right arm and hand therapy:

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:
Easy Walking Up and Go

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.

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!

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!

Friday, November 9, 2007

China Days 48-49: Happy, sad day... a tribute to Grandma Schenk

We got the news this morning that Dan's Grandma Schenk had passed away... Dan cried. He so loved his Grandma... she was (and is) very special to him. He was born on her birthday, along with Aunt Kathie – and that has been a bond for them throughout their lives. She was an amazing woman – you always felt loved when you went to see her – we will miss her dearly, but are happy that she is with Grandpa Schenk again, and with Dan's Mom. I am sure it was a happy reunion for them!

I am posting some of our favorite pictures of Dan and Grandma Schenk in remembrance of her today – her funeral will be on Monday. We are so sad that we will not be there, but we know we are doing the right thing here in China to help Dan recover, and we know that is what Grandma Schenk wanted for him. We will continue to work hard to realize this dream, knowing that they are watching from Heaven. We will do our best to make them proud....

Dan continues to work hard in therapy, and we have the opportunity to get out and see Beijing from time to time. We will post more on a later day, but today we want to stop and appreciate the great life of Neomia 'Pat' Schenk. Thank you for your wonderful example of goodness and righteous living! Thank you for your warm hugs and kisses! Thank you for your encouraging words and unending support! We love you, Grandma!!

Wednesday, November 7, 2007

China Days 46-47: Back in the saddle again...

Well, Dan had a little hiccup on Tuesday as he did have a continuation of his temperature and this made him feel very weak. He did not attend any of his therapy sessions due to this. Today, he was back to (almost) normal. He did get tired after a couple of sessions, and took a 30-minute break, but then he was back at it again in physical therapy. Today he did a new therapy as they put him in a harness to support his weight so that he could work on his walking and focus on how he moves his legs and plants his feet. I took a nice snapshot of it which I have included below. He also had a great day in occupational therapy – he is getting the rings higher and higher on the peg tree – now his is up past the pegs and putting the rings on the top! Way to go Dan!

Tonight we went out to eat at one of the Nuskin leaders here in Beijing. John and his wife, Sonya fixed us a great Chinese meal with a wonderful variety of food. It was really good to have some good home cooking-- much, much better than the hospital food!

I am still working on researching the kind of therapy that we want to have when we get home. When I am at home and working, I don't take the time to look at all the options out there, and this has been a good opportunity for me to look at the latest and greatest in therapy options and centers. We are trying to figure out what type of program would best fit Dan's needs and our lifestyle. We want to make sure that we continue with what we have started here and not drop the ball when we get home. There are lots of things to consider, and we will keep you posted as we better formulate our plan....

... until then – thanks for your prayers and support!

Dan getting the 'extra special' treatment from the three Traditional Chinese Medicine doctors!

Check it out! Dan is on top of the ring tree!

The new 'weightless' walking therapy!