Tuesday, October 13, 2015

12 Month Update

Nico had his one year after transplant checkup on September 22 and 23. His MRI did not show any new activity and all his lab results are in the normal range. Yeah!!!

He has not been on any MS medication since last year and he had no disease progression. He was able to reduce his symptomatic drugs to half the amount that he was taking before treatment. 

He still has continued issues with his legs, mainly spasticity and sometimes weakness. He is still using a walker and an good days a forearm crutch, and a scooter for longer distances. 

After his 6 month checkup he moved back home to Truckee. After 3 month on his own he decided to come back to San Diego and take advantage of some help with daily living. 

At the time he had weened him self off of Neurontin and Baclofen and was only taking Magnesium, Vitamin D3 and Acyclovir. But unfortunately this did not really work in his favor. He payed the price with increased pain and stiffness. 
His legs would sometimes just lock up and he was not able to bend them in any way. He fell a couple of times, luckily he did not sustain any injuries. 
He got very depressed and it was very hard on me too. You don't like to see your child suffer like that. Eventually he recognized that being off of any medication is not really the way to go at this point in his recovery process. He started to take Neurontin and Baclofen again and is doing much better ever since. 

When he is getting depressed, he always has the feeling that this has been going on for ever and ever. I started to keep track on a day by day basis, evaluating his mood, activity level and social interactions with others and marked each good day with :) , bad day with :( and neutral day with :- on the calendar. 
As it turn out the :( were few, mostly 2 days in a row, 3 at most! This really helped to stay positive and not get discouraged. He went to physical therapy twice a week and exercised at home when ever he was up to it.

All in all live after transplant is still not easy. It seems we are going one step forward and two steps back a week later. Of course, when he has a down day, you get worried and ask your self did the treatment not work for him? But then he bounces right back and you just know it did stop the disease, he is not getting worse, he is recovering! 

Most people evaluate the success of a treatment on the fact if the disabled person can all of a sudden walk normal again. That would be a really big thing. But a person affected by many, many years of MS damage does not stand up and just walk normal again. It is a long and slow process and might not happen at all. But there are so many little positive things that happened since transplant. 

His mind is sharp again, he pays attention to his surroundings, he is not sleeping all day and awake all night. He can go out into the sun and not melt instantly, he can read again and not have to hold his iPad 1/2 inch away from his nose. He is not constipated and does not have to take pills to go to the bathroom, he has an appetite and does not feel nauseous all the time. His eyes calmed down and are not spinning in circles, he can feel the floor under his feet and his hands are able to hold on to a knife or fork, lift up a glass. 

A year and a half ago he was loosing all those capabilities at an alarming rate and nothing we tried stopped this from happening. It is easy to forget how bad things were at that point. 

"It is what it is" as Nico likes to say. We are taking it one day at the time and just try to be happy that life is good!


Nico wrote something too for this blog:
Sept 30 2015
Ok, it's now been 1 year. The whole recovery process from HSCT has been a pretty challenging road ! 

In all my updates so far I've only mentioned the positive things that have been happening to me. I also want to bring up how difficult it has been at times. 

There are so many ups and downs. I've experienced times where my symptoms are way better than other times, like my vision, walking, balance, energy, etc. 
I have also had a couple of times where I got pretty depressed. I guess it's probably from feeling so uncertain about the final outcome of all these different feelings, and emotions I've been going through. 

I'm also trying to get off the meds I've been taking for so many years! Baclofen and Gabapentin proving to be the hardest, having spasticity, and stiffness on and off. Maybe it's just to soon, or maybe I will need some meds for who knows how long. 
I'm completely off Valium which feels pretty great ! The dream of being pill free someday continues. For now I plan on continuing taking 10 mg Lexapro daily, 10 mg Baclofen x 3 daily, and 300 mg gabapentin x 3 daily. That's 1/2 the amount I used to take, which seems to be enough to keep spasticity and stiffness at bay. 

All in all my condition has definitely improved from pre-transplant till now, which is pretty great.
 

Oct 01
Today has been really good ! Up at a decent time (9:15am), feeling well rested and visited my sister, nieces, and nephew in Murrietta. Endured the heat really well, about 85 degrees and just felt really good.
 

Oct 02
Woke up 7:30am to go to the bathroom and walked really well! No balance issues, no grabbing on to anything on the way, felt really stable. Went back to bed, got up around 9:30am and things were already a little worse again.
:( But other than that today was pretty good ! No heat issues, no nap, good energy !
 

Oct 03
Got up 9:30am well rested, which was good for a day of airport, and travel up to Reno and then home to Truckee. I had no problem finding the energy today ! It's nice to be home.
 

Oct 04
Today I was pretty beat and my body felt it, not much got accomplished. My legs felt pretty weak, had little spasticity, stiffness and tingling. Other than that I felt pretty good.
 

Oct 05
Today was good, thrashed over some pretty uneven trail in the woods.

Oct 8
Today was kind of ruff ! I woke up early, but not feeling very rested. My legs were really sore and I just stayed in bed. 

Finally got out of bed sometime in the afternoon. Made it into the shower and ate some cereal. Did not have much of an appetite for the rest of the day, and my legs still don't feel so great.
 

Oct 10
It's been a good morning, woke up 8:00am well rested. Took a warm shower, prepared some food, made my bed, worked out and still have energy! My legs feel good so far, no spasticity or pain, no cramping. They just feel normal.
:)

Oct 11
Today has been a good day, even climbed into the race car. I was not able to climb up in there any more before. Soon I feel some throttle therapy coming up!
:D




 

Tuesday, May 19, 2015

8 Month Update

My Perspective
It is difficult to give updates on someone who lives about 600 mi away from you. I see Nico quite often though, thanks to modern technology and FaceTime.

It was nice to have him living with us for a while. He moved away right after he finished high school and came only for short visits throughout the year. I'm still cooking too much food most of the time, but I'm getting slowly back to my "normal" life. I spend lots of time on my computer, learning new programs and trying to remember how to edit a video or organize all those pictures I'm taking every day.

But the best part for me is, that I don't worry constantly about him anymore. 


Here Is Nico's Take
So it's been about 8 months now since the transplant and lots has happened since
then. About 31/2 months ago I moved back to Truckee where I lived up until I had
to move in with my parents because MS attack left me so bad I could not take
care of myself. 

This was about 7 months before I got HSCT treatment, and I
started recovery there.too. All together I was gone from my home in Truckee for
about 1 year. 

There have been lots of ups and downs, but all in all improvements
continue. For example stiffness in my legs, spasticity, and visual disturbance has
fluctuated to the point where I felt like things are back to the way they used
to be pre-treatment. But no matter how bad things seem during these temporary
downs I always bounce back and continue to improve ! 

I walked .45 miles using my walker the other day, and my legs actually bend at the knees as I take steps.
Heat sensitively remains almost non existent, except during those downs.

My digestion (bowl movements) also remain normal since the transplant, and so
does urinating. I don't experience fatigue much anymore. 

All in all feel like I now live free of MS :).

Followup On Nico's 6 Month Checkup
We did get at last the result of his MRI: No new lesions have developed since the most recent MRI, which is dated July 1, 2014, and there are no enhancing lesions on the current study to suggest active demyelination. Also, some of the existing lesions have decreased in size.


What Else Is Going ON
A week ago, Nico became a US citizen. He had to travel to Sacramento for his interview. That would not be a problem for most of us, but he can't drive a car anymore and public transportation from Truckee to Sacramento is limited. But thankfully, one of his friends ( thank you so much, Matt!) was willing to drive him. Here is a picture of his new document.

His sister Jana became a US citizen too
He invented a new mobility device: the mobility skateboard

  video

He was able to walk unassisted outside the house


video

He worked on his off-road race car



My Conclusion
Despite the fact that his disabilities are all still there, sometimes affecting his life more than at other times, he seems to be really happy.



Sunday, March 29, 2015

6 Month Update

Followup 
Nico had his 6month followup visit on March 17 and 18 in Chicago. We traveled with Southwest Airline on Monday, March 16, and arrived in the evening in Chicago. We took the Go Airport Express to the Aloft on N Clark Street. Thanks to my son-in-law our stay at the Aloft was free (thank you Chance!). We had a nice room on the 18th floor, fully handicap accessible with roll-in shower, grab bars and build in shower seat. We had a nice view over the city toward Lake Michigan and were about 2 blocks away from the Trump Tower.


We love the atmosphere of the hotel and also the attached restaurant (Beatrix). The restaurant is not too easy to maneuver on a scooter or wheelchair, but it is doable. Nico was able to walk this time so we had no problem at all. Needless to say, we love the food and had all our meals there. They also provide room service for a $4 surcharge.

We got lucky with the weather in Chicago. When we arrived on Monday the thermometer showed 70°F and everybody walked around in t-shirt and sandals. The temperature dropped to less than 37°F during the night and stayed at 45°F for the next couple of days. But we had sunshine all the time, so no complains!

On Tuesday, March 17 Nico was scheduled to have a MRI at Arkes Family Pavilion on N St. Clair Street. This is a short 15min walk away from our hotel. I walked, Nico drove his scooter. As always, everything was very well organized and we did not have to wait for long. The MRI took almost 2 hours and I spend the time watching murder mysteries in German on my iPad. Time flew by and we made our way back to the hotel. By now the temperature was dropping and the wind picked up speed. We decided to take it easy and after a little relaxation time in our room we went downstairs to Beatrix for dinner.



Visiting the Doctors
On Wednesday, March18, Nico had an appointment with Dr. Balabanov at Rush University Medical Center and right afterward an appointment with Dr. Burt at Galter Pavilion. This time we took a cab to get around. 

Dr. Balabanov seemed first very short and stern and told Nico to only answer his questions because he did not want to get biased in his assessment of Nico's current condition. But this did not last for long, he got more and more excited and had a big smile on his face. He was obviously very pleased with Nico's progress so far and encouraged Nico to keep up with his exercises. He believes that Nico's walking will further improve and it might even be possible that he can ditch the forearm crutch and use only a cane. 

The visit with Dr. Burt went very well too. Dr. Burt is never a man of many words, but judging by the smile on his face, his evaluation of Nico's condition was also very positive. The MRI results came never up and we are still waiting to get our hands on the report. But I think if there would have been any concerns either Dr. Burt or Dr. Balabanov would have commented on it. 

Dr. Burt's nurse took Nico for the obligatorily 9 Hole Peg, math and walking tests. I don't really know how they turned out. Nico was exhausted and started to shut down. We walked/scootered back to the hotel and took it easy for the rest of the day.

On Thursday, March 19 the Go Airport Express shuttle picked us up at noon and took us to the airport. Our flight was full, but thanks to Nico's scooter, we are always the first ones on the plane and get good seats. We were both happy to be back in warm and sunny San Diego!

Looking Back
Last year, in March of 2014, Nico was in the middle of a really bad relapse after stopping Tysabri and switching to Tecfedera. 
He was no longer able to live on his own and had to move in with me and my husband. He could hardly walk, kept falling a lot, needed help to feed himself. Tying his shoes, closing buttons or lifting up a glass of water was almost impossible. 
But more importantly, his outlook on life was very poor. He did not want to live anymore and he was very depressed. 
I felt very helpless. He had tried all the drugs offered for MS, nothing really stopped his decline and now he seemed to be going down faster than ever before. 

HSCT
I always knew about the clinical trials using high doses of chemo therapy and  autologous HSCT to stop progression in MS. I read about this way back in 2002 when we first found out that Nico has MS. It made me very hopeful but at the same time it seemed as something unattainable. 
The mortality rate was very high and the patients treated were in much worse condition as my son was at that time. 
But now, 12 years later, he was in that condition. I realized that I had to go back and see what has happened during those 12 years and where that treatment was now. 
It did not take me long to stumble upon Georg Goss's blog and read about his journey to get that treatment and about his success to stop his progression. 
He went to Germany, really? He had this done in Heidelberg? We are German, we even lived in Heidelberg before we moved to America. Nico was born in Heidelberg! How did I not know about this earlier? At least, now I knew what to do! I would get Nico into that treatment and if it was the last thing I would ever do!

Today
Fast forward to March 2015, where are we now? After being successfully treated by Dr. Burt in Chicago, Nico is living again. He just moved back home to his beloved Truckee, in northern California, close to Lake Tahoe. He is a happy person and enjoys life because he has a future now. Is it always easy? No, absolutely not. He has still a long way to go on his road to recovery. He may never run again or skateboard or snowboard. He found other things to fill out his days. The following pictures will show what I mean better than I can explain.

 Going to KOH
Going to the King of the Hammers, to support his racing team.
One happy camper!




 First time back in Truckee





Day at the Beach

At the beach and not melting in the sun!

Addendum
At last, we got the report of Nico's MRI:
No new lesions have developed since the most recent MRI, which is dated July 1, 2014, and there are no enhancing lesions on the current study to suggest active demyelination. Also, some of the existing lesions have decreased in size.


Thanks for reading my blog!

Saturday, January 17, 2015

4 Month Update Part 2

Two month have passed since our last blog and we had a very busy time with all the holidays and birthdays going on in December and January in our family. Best part of all - Nico was actively participating in all the activities. 

That was something really new! Too many people in one place were always too overwhelming for him and therefore he mostly avoided to be part of  family events. If he was willing to come along he would usually pass out on the couch shortly after arrival and sleep until it was time to go home. Not so this time! He was awake and had fun with his nephews and nieces. 

There have been other changes as well. He used to choke a lot when he was eating or just drinking something. This rarely happens now. He also put on some weight and it is mostly muscle mass. It was very scary to see him getting sick with a cold. 

I had read reports from other people getting sick after HSCT and that their pre-HSCT MS symptoms would come back with a vengeance. But still it freaked me out. Amazingly he bounced right back to where he was before his cold and he got over it rather quickly. Me on the other hand, getting sick a week later, I was in bed for a whole week and needed another week to be able to function normal again.

He also has some down days. Sometimes his legs just don't cooperate and he has a hard time getting around. He clearly is on this roller coaster ride that seems to be a normal occurrence for many HSCT patients in the first year after the procedure.  

On Thanksgiving we had a very special guest at our house - George Goss came by with his lovely wife and 2 boys. For all my readers who are not part of the Facebook HSCT group - George is one of the few early HSCT patients. He had his treatment 5 years ago in Heidelberg, Germany. George had applied for Dr. Burt's clinical trial in Chicago, but was rejected for being SPMS (secondary progressive). Being a physicist and enjoying researching this did not stop him from finding a doctor who would perform the procedure for him. He found him in Germany. He was the first patient treated with HSCT for MS at the University Clinic in Heidelberg. He wrote a blog about his journey and he also founded a Facebook group:Hematopoietic Stem Cell Transplant - MS & Autoimmune Diseases. He is our HSCT guru and knows everything that has been published on the subject. He has and still does spend countless hours on FB to spread the word and help others. Finding his blog and signing up for his FB group was an eye opener for me. I will be forever grateful to George and other people in his group and sister groups for all the help and support that Nico and I received in our quest to find help and new hope for Nico.

Here is George's FB post after his visit:
Sorry I'm late for this post. Last month during the US Thanksgiving holiday I was visiting my extended family in San Diego and my wife and I had an opportunity to meet with Gerlinde and Nico Pecht that live not far away for a short, but enjoyable time (as is always the case for HSCT recipient club members to meet up). Nico underwent HSCT for his own MS in Chicago in 2014 and it appears clear to me that undergoing transplantation has been successful in arresting his underlying disease activity & progression (and the likely improvements that are ultimately materializing); something Nico richly deserves with his excellent attitude. But this also affords me the opportunity to mention something especially important here. . . . I am so happy to see people become their own best health advocate and not just leave it to someone that does not have a vested interest (such as many neurologists). Interesting coincidence is that Gerlinde is a scientist in her own right, being a molecular biologist as is my own wife. So she really provided wonderful research on the entire medical treatment topic of HSCT and STRONGLY supported Nico throughout his successful journey to utilize HSCT to beat autoimmune disease and she deserves HUGE thanks as a supporter and carer which such individuals are also intimately part of our community and deserve our absolute sincere thanks. My hat's off to both of them for taking and doing the steps necessary to make lemonade out of lemons and I am absolutely confident the best is yet to come
Nico replied: 

I can't express how thankful I am for my MOM Gerlinde Pecht, without her I would not even have known such a treatment (HSCT) existed. She also turned me on to this group, where after receiving a personal message from George Goss I knew HSCT was for me. My dream of the possibility to actually beating MS began. After I watched my mom put every waking hour of her life into getting me this treatment, I was in Chicago for evaluation by DR. Burt only weeks later and he agreed to treat me. My dream started becoming a reality. Now I'm just three months post transplant, and after 13 years of Living with MS I feel like I finally won the battle.

I tear up every time I read this....


Some fun stuff:

My husband Greg was off of work the whole month of December. We invited Nico to a trip to Catalina Island (off the coast of Los Angeles) since he has never been there. 
We boarded the ferry in Dana Point and took the hour long drive to Avalon. You probably have heard the saying "It never rains in California..." but of course it had to during the 2 days of our stay. 

Dana Point harbor
On the boot
We stayed at the Canyon Resort and had a big suite with a kitchen and giant bathroom. The hotel is a bit outside of Avalon, but they offer free shuttle service into town. 
On our arrival day we went out for lunch to a Mexican place and did some shopping at the Vons Express for our dinner. 

Lunch at the Mexican Restaurant
We were not able to cook (no pots or pans) but we had a microwave to heat up our frozen entrees. And it started to rain really hard. 
Next morning it was still raining, but we decided to go into town no matter what. It was not raining too hard, just a steady drizzle. After lunch we signed up for a Undersea Tour on a semi submersible boat and bought tickets for the Inland Motor Tour for our last day on the island. 

Waiting for the boat tour
On the way to the boat tour Nico's little scooter decided it had enough of all the water and stopped working. Fortunately the scooter is very lightweight and we were able to just push Nico along. 
Nico became very worried and a little upset about the scooter. We still had a great underwater trip, we were the only people on board! Like a private tour just for us. It is a great adventure, the fish in the marine preserve know the schedule and arrive in throves to be fed by the tour guide. It is impressive! 
We made it back to the hotel, just in time for the couples massage that Greg and I had booked for the afternoon. Nico stayed in the room and tried to get his scooter back to life. 


We had to check out of the hotel by 11:00 am the next morning, but the ferry to the mainland did not leave until 4:30 pm. This gave us plenty of time to take a bus tour to explore the island and maybe get to see some of the wild buffalo still roaming in the back country. 
We dropped off our luggage at the ferry station. The scooter still refused to work. We had charged the battery overnight and let the scooter dry out, but no luck. We kept pushing Nico and the scooter along. It had stopped to rain and the weather was quite nice. 


While Nico was waiting for us to come back from the luggage drop off, he could not resist and tried to get the scooter to start again. And it worked! Now the sun really came out on his face. Not that long ago I could not even mention the word scooter and he would get all angry with me....








We were lucky and saw the buffaloes. This was a really fun little trip.



Happy New Year and best wishes for 2015!

We are already half way through the first month of the new year. Last year around this time I realized how much Nico's disease had worsened and I became really scared.  2014 did not start out to be a good year. But now in retrospect it was one of the best years since Nico was diagnosed with MS. Now I have hope again and I know Nico will have a future.

I would like to take the opportunity and thank my family for all the support and love, especially my better half Greg. Also our extended family here in the US and my sister and brother with their families in Germany. And a  big thank you to everyone who sent money (or donated hotel points) to help pay for Nico's treatment, we are forever grateful.

And thank you for reading my blog.

Nico with his 2 sisters, brothers in law, 2 nephews and 2 nieces, mom and dad. the whole family in one place!

Friday, January 16, 2015

4 Month Update, Part1

Today is Nico's 4 month anniversary since he had his stem cells re-infused and started a new and better life. 

Here is what he wrote to put on the blog:


It's been 4months since the transplant, and here is what's been going on. 
My condition is still improving and I've not had any complications. The first thing
I noticed almost right away was that I no longer am so heat sensitive (intolerant to warmer temperature, no more cold showers).:) 

l just stopped going to PT, but I continue exercising at home. I have been working out for
about 45 min at home almost every day. I have been going on a 1/4mile walk a couple
times a week with the aid of a walker or 1 forearm crutch. This is something I would
not have had energy or strength for before HSCT. 

I don't nap anymore in the middle of the day due to fatigue just from being awake (pass out at least a couple hours). 
I have also been able to sleep throughout the night and just feel a lot more awake and sharp during the day. 
I no longer deal with constipation all the time. My digestion is pretty regular now. I haven't used any stool softeners, which I used almost daily before. 
My legs still have their ups and downs, they still get pretty stiff on a regular basis, and don't
want to cooperate. They also start shaking pretty violently sometimes. This changes from one part of the day to the other. 

But even when things get worse it's still better than pre-transplant. There also are times
when I experience my legs working better, and I can walk around the house with
no crutch, no holding on to walls or furniture. I can even go up and down the
stairs at home now without problems. 

I had my first cold around Christmas time which was pretty brutal. I spent 3 days in bed and lost function in my legs, even my arms did not work so well. That was a real scary time. 
But things went back to normal a few days later. 
Then I just had a real bad cough that felt like it would never go away, until the new immune system did its job and I'm back to making positive progress. 

video


Hair is coming back


I will be writing another post to fill the gap between our last post and this update, so stay tuned....

Sunday, November 16, 2014

Two Month Update

Today is Day +60 after Nico's stem cell transplant. It seems like an eternity, but in the great scheme of things it is still quite early in Nico's journey to recovery.

So how is Nico doing you may wonder. Actually, he is doing pretty good! Don't get me wrong, he still has a long way to go. But his outlook on life has changed dramatically. 
He is making plans for his future. It is not "if I will be able to do this" anymore. MS is no longer in charge of his everyday life. He has his ups and downs, not all days are great days. But he can say on Monday "I will go to a place with my friends on the weekend" and he will be actually able to go when the weekend arrives. Before HSCT it was always - "if I'm feeling up to it". 
 
Enjoying some time out in the desert

What has been happening since our last blog?
He spent a week at his sisters house with 3 kids, 2 dogs and a cat and he had a great time. He went to soccer practice with his little nephew and his niece. Being outside in the sun did not make him shrivel up like a plant during a drought. He walked up 64 steps to get to the soccer field and since it was so much fun he decided to go down and up again.
He was able to spend some time in the family hot tub in 101°F water and he enjoyed it. He handled the heat and it did not mess him all up. 

His legs are giving him some trouble though. Some days they are really stiff and achy. They also start to shake sometimes.

video

He is doing a lot of exercises to build up his leg muscles and also started physical therapy. 
We found a place not too far from our house and he can get there on his own driving his scooter. 
His balance did get better, he can do squats without holding on to anything. 

video

Walking outside is still challenging. He uses his walker and sometimes only one of his forearm crutches. 
His right foot is pulling inward and he is walking on the outside of his foot. He will get an A.F.O made to correct this and hopefully it will have a positive impact on his balance and walking. 

On a side note - he can actually feel the bottom of his feet now. At times he is saying that he can feel his nerves regrow and it gives him creepy feelings.

Here he is really proud of his returning multitasking capabilities.

video

His blood labs are all in the normal range now. He had to stop the antifungal meds for 2 weeks because his liver enzymes went up. But everything is good now. We are on the every 2 weeks blood draw schedule. 
Speaking of medications, he is still taking Neurontin and Baclofen for symptom management like he did before and during HSCT. He stopped taking Valium and Ampyra and hopes to be able to stop the other meds too in time.

His hair started growing in. First his facial hair and he had to shave again. Now it is also sprouting on his head. 


We received already our dates for the 6 month followup visit in Chicago - March 17 + 18/2015. Being a California girl, I'm not looking forward to that visit. I need to get some winter clothes.



Sunday, October 12, 2014

Day +26

We just finished our 2nd week back home and I guess it is time for an update. Nico has been very well. Here is what he wrote during that first week at home:

Been home for five days and all is well. No real problems, and as bad as I thought the eating part was going to be, it's really no big deal. I did not have to change anything, just no raw tomatoes, no problem. I feel really good, balance, eye sight, and overall thinking (feel smarter), has improved tremendously. My walking has also improved, although I can only walk really slow and not very far. I no longer wall and furniture surf to get around the house. No aid needed in house anymore, slowly but surely taking short walks outside with walker. Feeling some tingling in my hands right now, from the wrist down about 80 percent of the day, but I can deal with that. My appetite has been good and I weight the same as I did when I went into the hospital for HSCT.
 

As it turned out, the no raw tomatoes issue was never a point. We don't really know how this crept into his discharge orders. As Amy Morgan later confirmed, he can eat raw tomatoes as long as they are washed thoroughly. Here is what it says on the Discharge Instruction Note:

Diet (for 3 month): Avoid foods that may be contaminated such as salad bars and deli counters. Remember to wash all of your fruits and vegetables. Use separate cutting boards for raw meats. Wash your hands immediately after handling raw meats. Avoid raw eggs, meats and fish.

Other positive things that are happening: He walks up and down the stairs in our house without a problem. 

video 

  video

We made several shopping trips to the mall when the outside temperature hit 100°F. Something completely unthinkable before his transplant. He did not melt down like a snowman in the sun. He does not need much help anymore to do daily chores. I don't have to cut his meat any more. He can pour water into his cup without spilling it all over the table. His eyes have calmed down and he is now able to read. His vision seems to be better overall. But his eyes are still far away from being normal, they are still spinning around and he still has double vision when he takes off his glasses. But "they are not as annoying any more" as he says. He sleeps now during the night and is awake during the day. His energy level is really good.

He has started to do his daily exercises which consist of various stretching routines and special exercises to improve his balance. He is also using a resistance stretch band to regain more control over his arms and hands. 



He uses a rubber ball to strengthen his grip and also 2 golf balls to improve his fine motor skills.



During the 2nd week he got really ambitious and started to do squats to strengthen his legs. He is paying for his effort with sore legs right now, but he says it is all worth it.
Outside he is still using his walker, but we are going to try walking without aide on even surface outside pretty soon too

video

It is hard for him to be patient, he wants to go back to his home really badly.