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.


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. 


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.


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.