1.29.2013

What do you think of the new blog header?

It was kindly put together by Cristina Martin of cristinamartindesign.com, and also of Alessandro's pool of siblings.  (She's Al's sister in case that wasn't clear).  The facebook page has also been updated with the new header.  

She's very talented and I am so thankful for her offer to give the blog a fresh look.  Thank you, Cristina!

P.S.  Check out Cristina's work here.  Personally, I think this wedding invite is some of her finer work. 



1.28.2013

Little People Christmas Party

Alessandro and I had 6 out of 7 nieces and nephews over for a Little People Christmas Party a few days after Christmas.  (#7 was just shy of 3 months old at the time, so he had to miss out, but maybe next year!) 




Allow them to introduce themselves:




That giggling at the beginning of that video is the cutest ever!  Aless was standing behind me making funny faces. 

We started off the night with a pizza picnic on the floor. 



We also did Secret Santa gifts.  I paired the kids up and asked their parents to pick out something small (not more than a few dollars) to exchange.  


What I thought was really funny was the gift that Ava picked out for Saverio.  She arrived early and wanted to show me and Alessandro what she got for him.  We looked in his stocking and there was a bunch of loose change and candy.  Al and I laughed that she was giving him money and admittedly thought it a bit weird.  She explained that she had so much money that she just had to give some of it away.  While the others opened puzzles and coloring books, Saverio opened his stocking and his eyes just lit up.  He said, "Oh awesome, I love money!"  It was pretty funny.  Obviously Ava knows what she's doing. 

After gifts, we did crafts.  Before the kids came over, I did a little prep by putting removable stickers that spelled out their names onto white cardstock.  The idea was to have them color all over the page, remove the stickers and reveal their name.  It worked great for the older kids, but the younger ones couldn't be bothered with having to color in a pattern over the letters. 

 


All of the kids got special time with their Uncle.  



Later, we put on a movie.  Maya picked Matilda, which she pics every time.  



The girls were so cute together!  




Maya could not stop hugging Francesca.  At one point, Maya was in the bathroom for quite a while (must have been the pizza) and when she came out Francesca and Victoria greeted her with hugs. 

The night was really fun.  I loved having them all together in the same room.  Alessandro and I are always impressed with how well they all get along.  I think it's so cool that they like each other, ask about each other, and look forward to playing with each other whenever they get the chance.  Alessandro's sister told me that Victoria asks when CJ's coming over to play.  And my brother-in-law told me that Maya goes around the house saying that she's saving things for "Frances-ica," as she says.  

I look forward to getting them all together again.  They are the best kids and fill us with so much happiness.  I could kiss all of their cheeks forever.  (Except for Saverio because he doesn't do kisses). 



1.27.2013

Alessandro's 2013 Bucket List

Alessandro made himself a Bucket List for the year.  I thought it was a really good one, so I wanted to share: 


A couple of notes about some of those: 

#3:  Done!  He saw a few live bands at PJ's Lager House with our friend, Mike, a couple of weekends ago.  He had a great time.  Now I just need to get there. 

#4:  I bought him paint supplies and canvases so he can paint whenever he feels like it.  

#6:  He admitted that what he really meant was to ask me to make a blueberry pie.  

#7:  That one was inspired by his favorite movie, Rushmore.  While he hasn't gotten to say it yet, he has come close.  Our nephew, Saverio, loves pretending like he's in a real life game of Super Mario.  One day, Saverio kept calling Alessandro "Luigi" ("Cause you're tall Uncle") and Alessandro said, "Call me Alessandro.  Luigi was my father's name."  I don't think he knew anyone heard him say that, but I did and cracked up.  Saverio was confused. 

I haven't really thought about the adventures I'd like to have this year, but now I'm inspired to make my own list.  

What about you?  What are some things you want to do this year? I'd love to hear!  Let me know in the comments below or on the blog's FB page.

* * * 

1.20.2013

Coffee and Corticosteroids - Day 5 (Finally!)


We've been having a little too much fun this weekend, so pardon our delay in bringing you the last day's update.  I know everyone has been sitting by their computers with great anticipation.   

Our supplies for Day 5 looked a bit different.   


Alessandro said that he had been staring at the tiny bit of Knob Creek that we had left since Monday and he thought that he needed to finish it off in celebration of his final dose.

My job, other than to poor the whiskey, was to take the line out of his arm.  So his arm went from this...


...to this as I pulled the tape off...


...to this.


And this is kind of a gross picture, but Alessandro would want me to show you what was actually in his arm, so here it is.


And here's Alessandro once the line was finally out of his arm.  It was about 9:30 a.m. at that point, so that might be the earliest whiskey shot ever.  And yes, he wore the same shirt 3 days in a row for some reason. Said something about not wanting to dirty another shirt.


Later that night, we went out for drinks and dinner.  We went to St. Cece's in Corktown and enjoyed good whiskey, food and conversation. 



Alessandro was very happy to get out of the house .  I know that because he kept saying, "Thanks for making me get out of the house today.  I'm having a good time."  It was my pleasure. 

He had a good appetite that day.  For dinner he had Coq au Vin, which he loved.  


And I had the Cece's Burger, which was awesome.


Alessandro had cinnamon cheesecake for dessert and hasn't gotten it out of his mind since. 


We finished the night with double espressos at Great Lakes, one of my favorite places in the City.




To say that we were happy to be done with the week is an understatement.  

Also, Alessandro just told me that he has been keeping notes this week, so here they are straight from the source.  


This Week According to Alessandro:  


I can be a pain in the ass, even though I really wasn’t this time.

The doctor told me to immediately insert whiskey into my bloodstream.

My feet are swollen and fat, need sleep.

I didn’t sleep much in the end.

Marilena has to be the most patient person.

She took care of me, she was a great nurse except for the fact that she kept playing with the IV flush plungers.

I didn’t do shit all week.

It was the easiest week of steroids.

It’s hard not being able to do stuff for yourself, but Marilena makes it easy.

The thingy successfully stayed in my arm.

Our week appropriately ended with coffee.



Thanks, Alessandro for that wonderful insight.  Here is the song he selected for the final day.  The Rolling Stones - Beast of Burden.



While the steroids are done for now, we will continue to wait to see how effective they have been.  Alessandro has an MRI coming up, and then we will be considering his medication options.  There are still many things to unfold, and I will try to update here, so come back and visit!  


* * * 


For the full Coffee and Corticosteroids series, check out the preliminariesDay 1Day 2Day 3 and Day 4.

1.17.2013

Coffee and Corticosteroids - Day 4

Captain's log. This is the wife reporting.  Our mission is to make it to Friday.  The patient reports no change in mood, appetite, energy level or side-effects, although he has noticed his feet have become swollen.  The patient is becoming increasingly anxious to rid himself of the bothersome device from his arm.  He requested that we rise early in the morrow to administer the final dose.  After the final dose is administered, I will be permitted to remove the device from patient's arm and he can perform an act that has been much anticipated and severely overdue:  shower.  I have confirmed that the patient has at least been brushing his ivories and washing his face.  He is complaining of boredom and is anxious to leave the ship in the morrow.  To occupy his time, the patient has been attempting to determine which eatery he would like to frequent once his appetite and taste buds return to normal.  He reports that he has read a review on every eatery in the Metro-Detroit area.  To prove his point, he challenged me to "name a city" and he would be able to inform me of that location's most popular eating place.  I challenged him and he successfully proved his point.  The patient has chosen a song covered by Detroit's own, The White Stripes, entitled "One More Cup of Coffee" as the melody of the day.  Please enjoy the song and come back in the morrow for one more cup of coffee.





* * * 
To catch up on Coffee and Corticosteroids, check out the preliminariesDay 1Day 2 and Day 3

1.16.2013

Coffee and Corticosteroids - Day 3

I thought it would be cool if Alessandro updated everyone in his own words today.  Let's see what he has to say.  

 

So that's about it for today's update.  But I can't leave you without pics, so here are a few shots.


For the sake of keeping it real, here's what the scene really looked like before I cleaned up for that picture. 






And, here's "I'll see you in my Dreams," for your listening pleasure.  Let's all hope Alessandro can fall into a dream sleep tonight. 



* * * 
To catch up on Coffee and Corticosteroids, check out the preliminaries, Day 1 and Day 2

1.15.2013

Coffee and Corticosteroids - Day 2

Alessandro was very adamant that today's song should be Solange Knowles - Losing You, so here you go:


I told him that the song he picked was supposed to illustrate his current mood and that this song didn't make sense, but he told me that this just had to be the song.  He woke up at 4 in the morning with it stuck in his head and he's sort of obsessed with it right now.  It makes him want to dance.  Maybe after Day 5 he'll be ready for that? 

But for now, here we are with Day 2. 

We hooked Al up to his steroids a bit late today--around 6 pm. 


The steroid is in the vial and looks a bit like baking soda.  In this pic, Al is preparing the steroid by adding some liquid from the bag into the vial and shaking it up a bit.  


The goal is to turn the powdered steroid into a very clear liquid, like what you see below.  



Then we unwrap the tube and attach one end to the bag and the other end to the port in his arm.  But not before flushing the line in his arm with saline. 


Once his line is flushed, we hook the other end of the tube up to the port in his arm and try to get a steady drip from the bag going.  


And then we sit and wait.  Well, actually Alessandro sat and waited, but I ran to Walgreens, did the dishes and made and ate dinner in the hour and a half that the dose took to complete.  

After it was done, I detached the tube from the line in his arm and wrapped him back up.


Mood (according to me):  Good, but not as funny or talkative as yesterday. 

Side effects (according to him):  He smells weird and his taste buds "are off."

Energy level:  He's pretty tired today, which has much to do with his lack of sleep. 

Appetite:  He hasn't been very hungry today.  My mom took him to school and brought him a late lunch so he wasn't really ready for dinner tonight, but I made him eat a little something something. 


Nothing like farro, roasted chickpeas and feta atop a bed of mixed greens to cap off an evening of steroids.

P.S.  I tried to record a video, but I decided it wouldn't be entertaining whatsoever.  But I do have other plans, so keep coming back.  See ya tomorrow.


* * *
To catch up on Coffee and Corticosteroids, check out the preliminaries here and Day 1 here.

1.14.2013

Coffee and Corticosteroids - Day 1

Yesterday I told you how I was going to journal Alessandro's way through his five day steroid treatment this week.  Alessandro came up with the title, "Coffee and Corticosteroids" for this series (inspired by this and this) which I thought was genius, so that's what we're going to go with.

Day 1 

The nurse came over and hooked Alessandro up with a line in his arm and started his first steroid dose.  I came home from work a bit early so that I could sit with him while it finished up and to take it out and wrap his arm up after the dose was finished.  

This is what his arm will look like for the next few days.  (Except it's covered up in a bandage most of the day).



Mood 


I love his face in this picture.  Alessandro's in a good mood today.  He's on the couch playing music on his laptop.  He's funny right now.  He has a lot of energy and hasn't even been babying his arm too much. 

Earlier he was listening to Japandroids - the House that Heaven Built and he was jamming.  He suggested that each day's update should be accompanied by a song of the day that best illustrates his mood and he thought Japandroids was perfect for today, so please enjoy.  I'm very curious about what tomorrow will bring.




Al wanted me to tell you that he particularly likes the lyric, "And if they try to slow me down, I'll tell them all to go to hell."  I think he's feeling feisty today.  


Energy Level


His energy level is noticeably higher today.  He won't stop talking.  I've been trying to finish this blog post for the past hour, and he keeps interrupting me so I finally had to ask him to stop talking for the next ten minutes so I could finish.  

He hasn't napped, which many of you know has become his national pastime lately, and he's not at all tired.  (It's about 8:30 p.m. right now, so there's still time).  

A note about the above pic:  he and I were recounting scenes from my favorite movie, Inglourious Basterds, and he was being "Dominick Decocco".  I'm not sure why he and I get so much pleasure from that scene, but we do. 

 Side Effects



He's sucking on a lemon head here because they help get rid of a bad taste that the steroids leave in his mouth.  

I asked him if he wanted espresso so we could actually have coffee while discussing corticosteroids so as to legitimize our title a bit more, but he said that that would probably be a bad idea since steroids tend to keep him up at night.  Didn't think he should doubly decrease his chances for a good night's sleep, which is the right choice.

Right now, on Day 1, no real side effects, although he tells me that his arm is quite itchy.

Complexion


Alessandro tends to get pale right after he gets his dosage.  Here he was today shortly afterward.  Slightly Pale Al.  

Overall, not much to update today.  I think we're going to try to record some clips tomorrow for you, so stay tuned for the coming days. 

New Year, New Symptoms

About a week before Christmas, Alessandro started experiencing some new symptoms related to his MS.  His left hand started to feel numb (his right hand has felt numb for quite sometime now) and he was becoming more clumsy than usual.  Some of the "clumsy" things Alessandro has done lately include, but are not limited to: knocking his phone into a bowl of salsa, spilling espresso all over the stove right after he prepared it, dropping the car keys in that annoying spot in the car that is impossible to reach, knocking over a candle and spilling hot wax down the drain (had to call maintenance for that one), and acquiring a huge bruise on his arm, the origin of which is unknown.  In addition to literally not being able to get a grip, his walking ability has taken a hit as well.  

After a few weeks of us saying, "Maybe it's just because you're sick," or "Let's just see if things get better in the next couple of days," he decided it was time for him to call the doctor.  

So, one day last week we headed to the docs.  But not before we stopped at Russel Street that morning for breakfast : ) 


Geez, he's handsome.  

After throwing down some pancakes and corned-beef hash, we headed to the DMC.  


The doc tested his hand coordination, vision, arm and leg strength and measured his walking time.  To sum it up, he was generally weak throughout his arms, hips and legs, and one of his hands got a failing grade when he couldn't feel when the doctor was moving it.  (That sure would explain all the dropping of things).  

Also, quick note:  One thing that I learned at the appointment was that most of Al's symptoms are caused by the lesions that he has on his spine.  I was under the impression the symptoms came from his brain lesions, so that was new news to me.  Also, we are going to need to consider whether it is time to switch his medication.  He has been taking Gilenya for almost 2 years now, and considering that he is worse off right now than he was this time last year, we all think it may be time for a change.  There is way too much behind that decision than I can get into here, so I will save that for another write-up if I ever am so inclined. 

Here he is in the doctor's office simulating one of his hand-movement exams. 


And here he is hanging his head in shame because he failed: 


And here he is not at all amused that I am taking pics in the doctor's office: 


After a thorough examination, it was decided that he needed a five day steroid treatment to get him up and running again.  

The steroid that he gets is called Solu-Medrol, and it is used to treat exacerbations of multiple sclerosis.  In my own layman's terms, the steroid is supposed to give him energy, strength, and help him bounce back from his worsening symptoms.  While that all sounds great, I would be remiss not to mention Alessandro's point of view that steroid treatments suck.  Aless will have to spend the next five days with a line in his arm and will have to eat, sleep, bathe, drive, go to school and walk, all while worried about keeping that line in his arm and not dislodging it and having to start all over again and having it re-inserted.  Yeah, I can see how that would suck.  But an MS patient's got to do what an MS patient's got to do!  

I wanted to write this tonight because tomorrow is day one of his steroid treatment, and I thought it would be cool to document the changes, side-effects, and (pray for us) progress that should come in the next few days and the weeks to follow.  

Tomorrow (Monday) a nurse will come to the house and hook him up with an IV and will get him going with his first dose.  Over the next five days, he and I will hook him up to his steroid dose, which will take about an hour or so to drip from the bag into his body.  We will repeat every day until this Friday (glorious day five) when I will get to take the line out of his arm and he will be free!  (And he will no longer have a justification for not doing the dishes!)  

Stay tuned this week as I attempt to document the next five days.  What should we call them?  Steroid Week 2013?  Hey, that was the first thing I came up with and I like it!  Maybe it's because it's really late and I'm tired. Unless you guys give me something better, we're gonna stick with that.