Food, Drink, Prizes and More - Join us Thursday 4/30!

In an amazing show of support, many people have come together for a fundraiser for us on Thursday April 30, 2015 at Smokies Restaurant & Tavern in Wyandotte at 7pm.  What started out as my sister's desire to help us when she knew we needed it, has turned into a media frenzy! Okay, maybe not quite, but we do seriously feel the love.  This fundraiser is a result of a partnership and collaboration between Smokies, Krave Salon in Southgate, MediaGrump in Wyandotte and so many local businesses we cannot even count! 

This event will serve us in much more ways than just raising funds. It will be a good reminder of the support we have from our family, friends and even strangers. Alessandro was surprised to learn that his teacher heard about the event somehow and is going to come in a show of support. How cool is that? It will really mean a lot to us to see you there. We truly hope you can come! 

And I didn't even mention the incentives yet. There will be food stations from local restaurants, a 50/50 raffle, a tin can raffle from more than 20 businesses (including Slows Bar BQ), door prizes, and live entertainment. All for only $25 at the door or $20 in advance, and the proceeds will directly benefit Alessandro and I

Even if you cannot make it to the fundraiser, please know that you still help us by just being you. We are constantly amazed at the generosity, camaraderie, love and support we experience from you everyday. Whether it's buying us dinner all.the.time. (Mike), or a ton of truffles (Mari), or a magic spoon that helps Al eat (Tom and Kate), or organizing a summer vacation for us (Craig), hosting fundraisers (Heli and Megan; Aunt Irene and Uncle Rodger), handing us an envelope of cash for a new scooter (Keely and Cequent Group), bringing Alessandro lunch once a week (Mom), going out of your way to accommodate us in your home (Mr. and Mrs. Hinkle), supporting us at events (Marika), participating in Walk MS every single year (our family), or letting us store our ramps in your basement (Sofia and Amanda), we appreciate it all so much! 

Detailed information about the event on Thursday April 30 at 7pm can be found on the event Facebook pageSmokies is located a930 Biddle Ave in Wyandotte, 734-283-3228.

Follow Team Alessandro on Facebook and the blog too while you're at it. 



I am so proud of Alessandro. 

He taught his first high school class today as a pre-student teacher. He got great feedback from his instructor, his mentor teacher, and the kids. The second hour kids loved him and spread the word so that by the time fourth period came around, those kids were asking him to teach their class too! And most importantly, he had fun! I am very proud of him and so impressed that he is not intimidated by a room full of teenagers as I know I would be.   

Also, a kid gave him a fist bump the other day, which is the epitome of acceptance if you ask me. 


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!


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.


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! 


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.