My Blog List

Search This Blog

Follow by Email

Translate

Monday, January 30, 2012

Rough day all around

Joey is having a rough time these days.  He skin isn't looking good- today's dressing change found raw skin around his g-tube site and his entire lower back blistered:(  Not to mention the 20+ blisters just on his upper arms and neck.  Those all in in addition to the other wounds in varies stages of the healing process he has on over 50% of his body.  He squeaks when he breaths about 50% of the time which means blisters or inflammation in his upper airway.  He struggles to drink from him bottle at times.   Doses of pain medication is becoming more frequent.  Sleep- lets not even talk about sleep or the lack of it. 

Sami had a infected wound behind her ear.  Its not where her earring rubs up against the skin when she lays on that side but its likely the cause of it.  Hopefully it doesn't get any worse and require oral or IV antibiotics.  She really doesn't want to take her earrings out yet (she only has 8 more days till its been 6 weeks!)

I am in the middle of a flare right now.  I knew it would probably happen after the rough weekend I had.  While its not uncommon for me to work 16 hrs on the weekends (over the course of 2 days), it is rare for for me be on my feet the entire time.  Combine that with the emotional stress from transferring to a new store and saying good by to people have known for 10+ yrs.   We had our farewell party yesterday and while it was fun; it was also sad and emotionally draining.   It was so sad to see the almost empty store and they removed the neon signs for the outside of the building and boarded up the windows and doors.  It seem so much more real now.

My muscles and skin was extremely painful yesterday and I knew today was going to be rough and sure enough when I got up this morning, I could barely move:(  The cold weather (cold for Florida) doesn't help things either. I broke down and started a Prednisone tapper dose.  I haven't needed one in MONTHS!  Aleve is helping too.   And hoping to get a hot shower in sometime today too.  Monday is the busiest day of the week for us. 

Saturday, January 28, 2012

10 1/2 yrs of memories

In about 10 hours I will be heading to work for my last shift at the Target store I  have worked at for that past 10 1/2 yrs.   I have been with the company since 1994.  I worked during high school and all the way through collage and even though I was working as a legal assistant after collage I still worked at Target part time.  When Joe and I made the decision to move to Florida in 2001 it was an easy decision to just transfer to a Target down here so I would have a job.  I intended to find work eventually as a legal assistant, but that proved to be much harder than I planned.  I did find part time work in a law firm, but I then became pregnant with Sami and knew 2 jobs wasn't going to work out.  I could work full time at Target and get benefits, so the choice was easy to make.

We found out about 2 1/2 months ago that Target decided to close our location; it was no longer profitable to keep 1781 open.  And that was so hard new to hear...of the 120+ employee maybe a dozen or so have been there since the store open!  I think we were the most shocked of all.  It hard to put into words how I felt.  It was VERY hard to leave my job, family and friends when we moved to Florida.  While I have some friends here, no one quite like my friends back in Michigan.  The one thing that has been constant in my life since we moved here was my job at this store.    No matter where we were living, I still worked at the same store.  Many of my fellow team members came to Sami's baby shower after she was born and rejoiced in her birth despite all her medical issues.   They were there was we lost Garrett and many of them took time off work  three days before Christmas to come to his funeral and celebrate his short life with us.  The supported me when I decided to come back to work after his death.  They were happy (but thought we were crazy) when I announced each of my subsequent pregnancies:-)  They have all be understanding since Joey was born and all the extra care he requires.  I was fortunate that a former store manager created a position that was just right for me.  I was able to work when I could, putting my family first yet still able to have a job and keep my medical insurance.     And have been very blessed that all the other store managers that came after, allowed me to stay in the state position with some flexibility on my hours allowing me to be at stay at home mom during the day.  I am not sure if that will be the case at my new store but I am hopeful. 

I have made so many wonderful friends at 1781.  And its very sad that we are all leaving; going in separate directions.  Some leaving the company; others transferring to another store.  And along with the friends, comes so many memories...closing during the hurricanes; the fire in the supply closet and subsequent flood; the deadly accident in the parking lot; all the people who "drank the water at work" and the babies that followed:)  The weddings of fellow team members;  all the crazy black Friday's and the nights before Thanksgiving's.  Going to work at 3:30am EVERY Sunday to set the ad's! Going through 6 STL's and who knows how many HR's in 10 yrs....all the crazy/funny/happy/rude/mean guest that came through over the years.    I am sure there is so much I have forgotten but will remember as soon as I hit publish! 

To my fellow team members/friends:  THANK YOU for a wonderful 10+ yrs.  I am thankful to have known you all (even if for a brief while)  I wish the very best on where ever the next chapter of your life leads you. 

I will close with a song that is sorta fitting for us.  While we may not have always looked forward to going to "work" each day, I know many days it was the people we work with that made it worth it.

Here is the theme song from Cheers:

Making your way in the world today takes everything you've got.
Taking a break from all your worries, sure would help a lot.

Wouldn't you like to get away?


Sometimes you want to go


Where everybody knows your name,

and they're always glad you came.
You wanna be where you can see,
our troubles are all the same
You wanna be where everybody knows
Your name.

You wanna go where people know,

people are all the same,
You wanna go where everybody knows
your name.

Full Lyrics never actually aired


Making your way in the world today

Takes everything you've got;
Taking a break from all your worries
Sure would help a lot.
Wouldn't you like to get away?

All those night when you've got no lights,

The check is in the mail;
And your little angel
Hung the cat up by it's tail;
And your third fiance didn't show;

Sometimes you want to go

Where everybody knows your name,
And they're always glad you came;
You want to be where you can see,
Our troubles are all the same;
You want to be where everybody knows your name.

Roll out of bed, Mr. Coffee's dead;

The morning's looking bright;
And your shrink ran off to Europe,
And didn't even write;
And your husband wants to be a girl;

Be glad there's one place in the world

Where everybody knows your name,
And they're always glad you came;
You want to go where people know,
People are all the same;
You want to go where everybody knows your name.

Where everybody knows your name,

And they're always glad you came;
Where everybody knows your name,
And they're always glad you came...

source: http://www.lyricsondemand.com/





P.S.- I knew I would forget to mention something I wanted to say!  But at times I just want to get tomorrow (and Sunday- we are having a going away party)) over with. Other times I never want them to get here...almost feels like we are going to a funeral. I guess in someways we are...

Tuesday, January 17, 2012

Overdue update

I know I haven't done much of an update for a while.  We have been WAY busy the past month or so.  I know I total missed a Christmas post.  Thanks to wonderful family, friends and complete strangers the kids had a great Christmas!   We had a couple of secret Santas this year and The Butterfly Fund made sure MANY kids who have chronic illness or have siblings with Chronic illnesses had a GREAT Christmas!  If you are ever looking to donate money to a good cause, THIS would the one!  They help so many with EB and other life long medical conditions. 

Joey is now 10 months!



Stats: 20 pounds!  Size 4 diapers, size 18-24 month clothes (mostly due to bandages)  He is starting to bear weight on his feet!!!  He is currently cutting 4 teeth!!  The first one appeared Christmas Day, the next New's Day, 3rd on the day he turned 10 months and the next just this past Saturday.  His eyes are a mess.  Blisters and wounds in and around both of them.  He doesn't like his eye ointment so that is a struggle.  He still loves to eat as long as he can feed himself.  His skin is about the same; still battling infections most days.

Grace is counting down the days until she starts school (in August)!

Summer is doing good in school and enjoys going most days.  She is busy with Daisy Scouts and attended girls scout camp (just for the day) last weekend.  

Sami is enjoying school and doing well.  She is quite busy as well.  She has some activity 3 days each week after school and is in girl scouts as well.  She too went camping last weekend (all weekend) and it was VERY cold while they were there.  We found out yesterday that the rods in her back aren't sliding like they are suppose too so she will likely need surgery again soon.  We are still battling with the hospital and insurance company about her last surgery so there is no way she'd be allowed to have another elective surgery until that is resolved.  Plus we nor her doctors wants her to miss school unless necessary so he is fine waiting until the summer.  

We finally got Joe's truck back yesterday after 10 days (and a whole lot of money) of being in the shop!

A week from Saturday the Target store I have worked at for the past 10 1/2 yrs will be closing its doors for good.  I am transferring to another store about 8 miles to the west of us.  I worked at that store before for about a month but things didn't work out and I went back to the one I am currently at now.   I hope things will work out better this time.  I start there on January 29th.  

Here are some pictures.  No we aren't at Disney World.  Its called Downtown Disney and is just a place to walk around, look at shops and eat dinner.  It doesn't cost anything to walk around so we meet another EB family there earlier this month.



Summer and Grace with Minnie and Mickey


 all three girls with Sleeping Beauty




 Sami, Joey and new buddy Liam


 Summer, Sami and Joey



Joey standing with help!



Wear Red for Tripp

Tomorrow at 1pm Central time Tripp's celebration of life will be held.  More details are on Courtney's Blog   Tripp LOVED Elmo and in honor of Tipp "Elmo" is asking that everyone wear red tomorrow in memory of Tripp!

Sunday, January 15, 2012

Little Drummer Boy

Haven has a new Angel.. Little Tripp lost his battle to Junctional Hertliz EB on Saturday he was 32 months old (5/14-2009 ~ 1/14/2012)

There have been lots of articles on him today!


His local news station

His AWESOME local community

and of course from his own mother



Rest in peace little drummer boy, rest in peace...