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!
Tuesday, November 27, 2007
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...
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