2.19.2015

Deep Brain Stimulation

I mentioned here that Alessandro was considering DBS to stop his tremor. We have watched a few videos of the amazing difference it could make, and to say we are excited at the possibility of a steady hand is an understatement. Please watch this local 10 minute story about the life changing potential of DBS and the talented Henry Ford Hospital staff that could make it happen: 


We will be going through some consultations soon so stay tuned!

2.02.2015

Something amazing happened...

Alessandro built a Star Wars Lego.




Amazing because of the fine motor skills that are required to complete this task. It took him a few days over the course of about five hours, when it may have taken you or me about 30 minutes. I was inspired by his undertaking of this difficult project and was really impressed that he did not get frustrated or give up. When he dropped pieces, he figured out ways to safely lean over and pick them up himself. He only needed my help for about 1 or 2 pieces and for the stickers. It truly was an impressive feat!



Alessandro's brother and his wife (Tony and Keely) bought him this Lego for Christmas with the occupational therapy aspect in mind, but also knowing that Alessandro loves nothing more than a good Lego and of course, Star Wars. It was a perfect gift that combined therapy and entertainment! 

Speaking of Star Wars, Alessandro recently had an hour+ long conversation with a sweet little 10 year old boy who he met for the first time this weekend. They both proclaimed each other the "smartest Star Wars fans ever." The little boy knew way more than Alessandro though, because he had memorized the Star Wars encyclopedia and is a current fan of the animated show, Star Wars: The Clone Wars, which Alessandro has never seen. Even though I found their conversation very boring, it was actually pretty cute watching two nerds share their passion.

This was actually not the first time Alessandro stole the heart of a young boy with his Star Wars knowledge. In fact, just a few days ago, he attempted to give a synopsis of the plot to his nephew, Saverio, who had never seen the movies but was still a huge fan. I caught a bit of the conversation as you can see in the video that follows:




We put on Star Wars Episode IV shortly after they had this conversation and Saverio's mom tells us that Alessandro has created a Star Wars-loving monster.





1.01.2015

Looking Back and Moving Forward

This was a hard year for us and I really have not been inspired to reflect on it as many people have been doing these past couple of weeks. But, after thinking about what we have accomplished this year and all that we have been through, I thought it was almost criminal not to memorialize it somehow. 

The hardest part of this year has been Alessandro's loss of hand function, which makes it hard for him to eat, drink, type and most everything else that requires hand function. (Remember this post? He can't even puzzle in his current condition). As you can imagine, not being able to use his hands has seriously affected his quality of life. We are in the midst of considering a serious treatment option called Deep Brain Stimulation and we are very hopeful that this treatment could restore his right hand function--something he has been without for about a year now. He is already compiling a list of things he wants to do when he can use his hand, which include: 
  1. Build legos
  2. Smoke a cigarette (he doesn't even smoke)
  3. Drink espresso out of a tiny cup
  4. Eat on his own
  5. Cut his toenails (I have to do that now and I would put this at #1)

I asked him why "Write my wife a love letter" was not on the list and he hasn't given me a good answer yet. 

And even though it was a hard year, it was also a good year in a lot of ways. I will tell you why if you are interested. A lot of it has to do with our acquisition of new mobility aids that have made our lives so much easier. 
  • We bought a new (used) handicap accessible van, which means no more lifting Al into the Saturn and breaking down his scooter and putting it in the trunk every single time we have an outing. This has been a life back saver for me! Here he is eating apple orchard donuts in the front seat of our van, which is removed so that he can park his scooter there. Pretty cool. 


  • We discovered the wonders of Crocs. Bought him this pair for his birthday (pictured below), which he thought was the worst birthday present ever, but I knew we needed them. His feet had been swelling up pretty badly and we were having a hard time getting his feet into his tennis shoes. Luckily, the swelling has subsided so the Crocs are on standby for emergencies, but they came in very hand for a few months this summer. (I tried on his Crocs and immediately fell in love. I am now an avid lover of Crocs and already bought these for the summer).

  • We bought a new lift chair recliner, which allows him to sit comfortably, improves his posture, and has helped tremendously with the aforementioned feet edema. He went from sitting in this terribly uncomfortable looking position for the majority of the day (sorry, Al)....

    to this comfortable and cozy position...




    Much better! This has been a life saver for both of us because now he doesn't have to wear  the Crocs (a plus for him) and I don't have to massage his feet (an obvious plus for me). 

  • He also got a new scooter this year with generous contributions from the Michigan Chapter of the National MS Society, a non-profit organization called Stepping Up for MS, our sister-in-law's employer, Cequent Group, and a generous discount from Amigo Scooters (more to come on the last two sources later). We went on a walk for the first time in a long time a few days after he got the new scooter. This has been his life saver. 



  • We bought aluminum portable ramps that allow us to enter houses a bit easier. The setup of some homes still require that Alessandro be carried in, which is not pleasant for anyone, but the ramps have worked out quite nicely for homes that we frequently visit and have been a great help. Another back saver for all involved. 

  • We finally figured out how to get a good night's sleep. Alessandro went about 4 years without sleeping through the night before we found a solution this year. My sleep was only disrupted for about 7 months out of the 4 years so I should not complain, but I will and did anyway. 

Outside of health-related issues, we experienced a lot of great things this year. 

  • I started the year out with a trip to New Orleans for training. I fell in love with that city. I met good friends, learned a lot of great persuasive writing techniques, and had a great time bonding with my co-workers and friends. And the beignets were the bomb! 





  • We went to Florida to see our Tigers in Spring Training! We are glad we went, but we wouldn't do it again for a number of reasons, including the fact that it's expensive and Tampa is not even that warm in March. It was our first time flying and traveling with a scooter, so we learned a lot.




  • We celebrated our 4th wedding anniversary at our wedding spot, Angelina



  • Alessandro's best-friend and his wife moved back to Michigan after about 7 years. Tom and Kate are our dear friends and seeing Tom and Al together is one of my favorite things. If anyone knows Al better than me, it's Tom. Here they are eating foie gras, even though in their own words, "We know it's wrong, but we have to try it."




I don't think they liked it. 

  • We went to Chicago where we hung out with Al's old college friends, Brian and Luke, and saw Luke perform as the front-man in his band Lucas Jack



  • And this is the year that we met Rick Bayless, our favorite chef! We were star stuck. He was shopping for cheese in Chicago's new and wonderful Eataly. 


  • Team Alessandro raised over $20,000 this year for Walk MS! We have the most amazing family, friends and supporters, including my sister who hosted a DIY fundraiser in her basement, raising over $1,000. 


  • Alessandro finished his course-work for pre-student teaching with a 3.9 GPA! Talk about impressive! 

  • Our new nephew was born! And is there anything better than babies? Answer--No! 


So, looking back, there were so many amazing things that happened this year and we are so grateful for all of them. But we are really hoping this next year gives us even more reasons to be thankful. Our goal for 2015 is stability and an increased quality of life. We don't want to lose weight or pick up new hobbies or do the Whole 30, all admirable things, but just unimportant things in the scheme of life. We want health and stability for Alessandro and not much more. Here's to a new year! 

12.23.2014

Number 8

There's a new nephew in town! 


Meet Zeno. He's such a heartbreaker.





And he has at least one dimple!



And pursed lips just like his Grandpa.



He's probably dreaming about sleepovers with his Auntie.


The beautiful family of four.


Alessandro still can't believe that his little brother is a dad. It's cute how proud he is of him.   

Zeno makes 8 little buddies for us 8-years-old and under. Gotta love other peoples' kids! Keep 'em coming please. 

11.19.2014

In Another Life

We were sitting around tonight talking about our college-aged selves and whether or not we would have liked each other had we met at a different point in our lives. 

Alessandro then lets loose of this gem: 

Him: "Man, I thrived in college."
Me:  "And by thrived you mean..."
Him: "I talked to people. And people talked to me...
Even though people sometimes thought I was that other kid."
Me:  "Yeah, Peter Krupa."
Him: "Yeah, but I was the bigger, taller Peter Krupa." 


10.20.2014

Hallowe'en at Greenfield Village

Seven years ago, Alessandro's sister Nicole shared a wonderful Halloween tradition with me. Trick-or-treating at Greenfield Village. A few of us adults take all of the kids and together they hold hands, enjoy the hundreds of carved pumpkins and complain that they did not get enough candy!

It started with just two children, Ava and Saverio, in 2007; then the group kept growing and growing with the addition of one new child each year. A cute kid in a costume is the most wonderful thing! Seven cute kids in costumes? Just can't even handle it. 

2007: 




2008:





2009:






2010: (Full disclosure, we went to the Zoo this year, not the Village) 
  


2011:






2012:





2013:







 2014:

This year Ava went as a "creepy baby," although I think she just looks really adorable, Maya was a very sleek black widow, CJ broke his 4 year tradition with the super hero theme to be a a scary jester, Saverio and Victoria stuck with their theme as Mario and Princess Peach for the 3rd year running, Francesca was sweet as a cheerleader, and Enzo as his favorite, a Ninja Turtle. 







CJ and Frank below. I really don't know what these boys were supposed to be, but they were creeping Enzo out. 


The gals...


Saverio and his friend that is a girl...



The group! 



There are people dressed up in cool costumes at each candy station...



Frank would want me to tell you all that we made him take this picture...



It is always fun getting the kids together and for me, seeing all of my little ones in one weekend, let alone one day, is the best gift ever.

Have you been to Halloween at the Village? I would highly recommend it.