Monday, July 30, 2012

Adventures of HOPEforSteve :) Lots of updates!

Hey all!  Wanted to write a quick blog sharing about our trip & some new things coming up :)

Steve & I want to start this out THANKING everyone who has given us trips from the bottom of our hearts---it's amazing how much traveling helps Steve & I :)  It gives us joy & gets Steve out of his routine of constantly being home.  So thank you!

We recently were blessed to be able to take a week long road trip & I wanted to share a little about it.

 First place we were blessed to visit with a given away 2 night stay at the Blue Heron in, it's in Darien, GA.  This place is off the beaten path & SO worth it.  It's quiet, peaceful, & beautiful.  It's a bed & breakfast set up on marshlands in south GA.  The views were amazing & it's located close enough for us to have been able to go explore St. Simon's which was also amazing! Bill & Jan who ran the bed & breakfast are so welcoming & warm & they had a welcome dog Sassy to make you feel even more at home.  The breakfast was amazing also, & I now got a new sweet potato pancake recipe for all my new cooking adventures (which I will get into later:) Anyone needing a quick & peaceful getaway I would def recommend it :)

Our second stop was a gift given from Allison Potter, thank you again!! She was given a 2 night stay to Amelia Island & was unable to use it. It was really cool to be able to make a big road trip of this & see new parts of GA/FL we haven't explored.  We felt like travelers being able to go from one spot to the other---was really cool.  I stocked up on a ton of sea shells at Amelia Island as there beaches were covered with really pretty ones :)  Unfortunately this portion of our trip we got rained on both days---but it's okay any time out of the house somewhere near the beach & us being together is fun!  It was enjoyable to have a comfy room to stay with an ocean view & with the storms listening to the waves was AMAZING! :) We got lots of rest & relaxation here and enjoyed being able to rest without having anything to worry about!

The final stop was to stay the remainder of the week at the Dezember Condo near Clearwater.  It's obvious this is Steve & I's happy place as we try to go as often as we can.  Was amazing how breaking up the drive down by having the 2 other pit stops made the drive so much easier!  This part of the trip I was determined to get SUN! :)  Steve's parents made the trip that weekend also to hang out with us at the condo.  Was fun for us all to get to spend some time together stress free at the beach!  We got to see Lisa which is always nice unfortunately the last day Steve was feeling a little under the weather so we didn't make it back to see Dan, but no worries we will be back before too long.  We can't stay away from the condo too long! ;)  We successfully got nice & tan & were ready to head home to see the pups!  Always miss them being away for a week---but was SO nice to get away for a week :))) MUCH needed & MUCH appreciated for all that made it possible!

Isn't it always true that coming back after vacation it's much more difficult to return to the daily grind, but this was true plus much more.  Steve had a rough day Tuesday so I stayed home & did some paperwork from home that day & then leaving him Wed & Thur were heart breaking.  I broke down in tears multiple times those days.  Steve has a lot of difficulty doing ANYTHING on his own & that includes using the restroom---& when you gotta go, you gotta go but what do you do when you can't go on your own & there is no one there to help you?  It's been a while coming but I've had to make the tough decision to put in my notice at work.  As it's not fair that I leave Steve at home & go help complete strangers.  While I was holding onto this job for flexibility purposes---financially it isn't working out.  After lots of number crunching from Steve & I---we determined with the travel that my work demands it's financially cheaper for me to leave my job (as it wasn't paying enough at all & an in home nurse at this point is way out of budget) so I can stay home & take care of Steve instead of hiring someone.  After researching it was determined that even with Medicare covering a portion due to Steve still being in what they consider the early stages an in home nurse would cost more than I made in a month---with much thought & consideration we both decided it would be best for me to be home with him.  PLUS---I miss him while I'm away, I worry every second I am away from him.  Not a minute goes by that I don't wonder if he is OK, while we are blessed with amazing people coming & checking on him, it's now becoming unsafe & unfair for him to be alone.  It's also unfair to my job that I can't put 100% into my work & to myself that I am stretching myself so thin.  This is the best decision both financially & mentally & we appreciate everyone's support throughout this tough period.  My last day will be September 7th.  I have applied to several jobs where I can work from home & if anyone knows of any they could send my way I would also appreciate it, to have some back up. 
---> My Goal is to make HOPEforSteve a foundation---I want to be able to not only be home taking care of my husband but also want to help other PALS & caregivers as well.  This is something that I will CONTINUE to be working on over the next month as it is very time consuming. 

With that, wanted to remind everyone of some fundraising we are doing:

#1. Hope For Steve Roller Hockey Classic  This is a wonderful event that some of Steve's old hockey buddies have put together for us!  Words cannot express how grateful we are for this!  My momma will even be flying in to be apart of this special event :)  The event is August 4th, starting at 4 PM at

Pickneyville Park Roller Hockey Complex.  There will be a silent auction, food, hockey, & a HOPE for Steve booth set up with Tshirts, bracelets, & car decals.  
#2. We are still selling bracelets & car decals, but we recently added some amazing t shirts that Steve & I designed.  They will be sold for $20 a piece.  If interested go to click on the donate tab & you will see where it instructs you to donate directly to Hope & Steve.  Please be sure to include if you want a male or female t shirt as well as what size.  We placed our first order & they should arrive the 1st :) I'm excited about them! 

#3. There are a few other fundraisers in the process as we speak that others have put together---as we get more details & dates I will update y'all :)

special thanks:
Just wanted to write a few thank you's:
*First of all again to EVERY single person that reaches out to Steve weather it's email, visiting, prayers, food, facebook messages, twitter, etc.  You all are amazing & I see that each time he gets a large amount of out reach he has better days--so thank you---you all are keeping him going :)  
*Special thanks to all of my friends/family that have been there for me lately.  I've had a stressful few weeks with trying to balance both work & Steve & home life & my health & my sanity & I need to thank everyone who has been there to wipe my tears, hug me, snap me out of a funk, teach me to cook new things, share funny stories, come visit, brought food, or just simply sent me a message telling me I'm doing great.  Without each of you I would have lost my mind a long time ago.  Thank you for constantly staying by my side even when I'm unable to be myself!
*I need to thank STEVE :) I need to say that Steve has taught me so much about life, love, & relationships but also taught me a lot about myself.  Steve is experiencing one of the toughest things anyone has to face & still he loves & cares about me enough to constantly check on me & if I'm okay.  He's very tolerant of my moods & understands (probably more than anyone) when I'm just blah.  He always has my back no matter what the situation, even if I may be overreacting he has my back.  He is so loyal & encouraging & when everyone would understand him being selfish & focusing on himself, he never fails to check in to make sure I'm okay.  Steve knows how difficult it's been with me trying to balance work & being home with him & was the biggest supporter in my leaving my job---Not just because he wants me home so we can spend more time together but because he hates to see me stressed out.  That is a huge testament to what a great person Steve is & I want to thank him!!
*Special thanks again to my sister for constantly keeping up with paypal & our website!  Jes is very quick to act with any updates or changes that need done & we are very grateful for her!
*Steve's friend from his old work Jordan, & the whole company recently sent us a wonderful envelope full of letters from his buddies from Technipower sharing stories how Steve has encouraged him.  This was so thoughtful & touched Steve & I both so much!  Thank you to the whole TechniPower team for never forgetting about Steve & always being there when we need you. 
I know I am forgetting people, but honestly everyone of you who are there for us & support us (you know who you all are) thank you---from the bottom of our hearts.  You guys are our fuel & we love you all dearly. 

Friday, July 13, 2012

Pump...Pump pump it up :)

Hey all!  Few things I want to state:

#1. Thanks for everyone who has been extra supportive of me the past few weeks---I've been having some moments of feeling overwhelmed---thus leading to me getting behind on some things---and I've been reaching out & needing lots of help lately!  Thanks for everyone being patient with me & always there at my beck & call! :)

# 2.  I am working on making HOPEforSteve a foundation---I've wanted to do this for some time now, but God is showing me it's time to do it NOW---this is a lot of work & I want to thank everyone for their help & also invite anyone who is familiar with the process to contact me with any tips or advice you may have!

#3. Don't forget we have HOPEforSteve bracelets & also now car decals---contact me if you are interested---these are easy ways to help spread awareness & get the word out about Steve. Visit if interested!  Also, continue to share your photos wearing the bracelets---I have a plan to use all these photos & need few more before I can complete the plan ;) 

#4. Some amazing donation of items have occurred & I need to give a special thanks to a dear woman Lisa, who works with ALS Guardian Angels for thinking of Steve & I and donating some great equipment: We've received a dinobox (speak easy machine for steve) as well as a lift to get Steve in & out of bed (SUPER excited about this) & some few other things in the works.  This is an amazing organization that goes above & beyond for ALS patients in getting them things they need to make life easier---I'm overwhelmed with gratitude for this amazing organization. 

#5. We've gotten Steve started with a bi pap to sleep with, as well as started using the cough assist machine & suction to help relieve some Flem.  These are amazing tools that were all donated to us & we are very grateful for not only the donations but finally having them working for Steve.  We have noticed a huge difference since Steve has been using these & it is the extra motivation Steve needed!

#6. Few things we have HOPEFULLY in the works that I want to ask prayer for---I can't give too many details about them just yet, but these things would help make things AMAZING for Steve & God willing they work out---could be the miracle we need.  Please be in prayer for these & I will update y'all as soon as I can. 

#7. Also, congratulations are in order for Steve's sister Rachelle for welcoming new baby Reese into the family---She is beautiful & Reagan is a great big sister---photo is blurry but still cute, hard with little ones to always get great photos but more will follow in the future:)

Well time to get back to tons of work just wanted to take the time to write few updates---will keep everyone updated on the hopeful things in the works as well as any other updates that come along.  Thanks for continuing to follow our journey & please continue the movement of love & hope.  Remember we are trying to spread the news of living your life to the fullest, loving those that are in your life, & being hopeful everyday.  We love you all & thank you for the continued support. 

Feed Steve :D

Feed Steve:

#1. Everyone has kinda gotten away from using the care calender---but I am going to beg & plea we start this again!! It was the best way to assure Steve has someone to bring him lunch---I have several people I use as "on call" but I hate for Steve to be at home wondering when he is going to eat & who it will be.  If everyone could please get back onto signing up on care calender whenever you wanted to come see Steve that would be a huge help to eliminate days whenever he doesn't have anyone.  Steve counts on people to be able to eat throughout the day & I know it helps both of us to know who is coming & when. Another reason is, is honestly I am unable to fully keep up with who is coming each day without this helpful mind has 199384 things on it on a day to day basis so please help me add a little more sanity.  If you are interested in visiting email me & I will forward you the instructions (thanks ERICA) to how to sign up.  They are simple & easy & if you are going to do several days that you know sign up for them in advance.  HUGE thanks for everyone visiting & helping with this. 
#2. Steve can no longer feed himself---he can do some things on his own but he will need help.  He of course is prideful & hates that he has to ask for help, so I will go ahead an eliminate all of that, if you are bringing him food odds are he needs you to help feed him. :)  He is doing a great job with eating still, and if we can continue to assist him in this I know he will continue doing a great job eating. 

****IMPORTANT***** As mentioned above I have step by step directions to use the care calendar please email me & I will mail you the directions.  Thanks. 
I have been saying for a while that I would provide a list of acceptable/preferred foods for Steve.  So long awaited---
  • Carne saga beef tacos from twisted taco w/ rice
  • Steak tacos from chipolte or moes with lettuce, salsa, & corn.
  • Milkshakes always allowed---he prefers chocolate
  • Cokes/Other sodas are allowed---but if you are bringing him a coke it would be great to include a water as he may enjoy cokes more but NEEDS water---he sometimes has a hard time with water so if you wanted to get a carbonates or flavored water he has less difficulty swallowing (preferred: fizz water (all flavors) & all vitamin water)
  • Beer is allowed (preferred: Sierra Nevada, Sweetwater)
  • Anything from the hot bar at whole foods or fresh market---know it's a little pricey and not conveniently located but it's super healthy & they have lots of high calorie foods
  • Steve loves all meats---but don't want low quality meats---NO more waffle house, McDonald, taco bell, etc. (wahwah)
  • Pizza is always welcome from anywhere---he will need monitored while eating the pizza to assure he doesn't choke on the crust---thin crust is easier for him to eat but sometimes regular crust just tastes better.  If so assure he has plenty to drink & takes small bites.  He likes Peperoni & plain cheese.
  • Wings are welcome---I'm a little flexible with where from, but he likes medium with Ranch- & celery--again will probably need monitored & helped eating these.
  • Burgers are always welcome if they are from a restaurant or cooked on grill----no more fast food burgers however as we want to monitor the quality of his meat. 
  • He likes seafood---but is particular about what kind so use your judgment if it seems good quality go for it.
  • Subway & Jimmy Johns---he likes Turkey subs---another one where he will need someone to sit with his as he eats to assure he doesn't choke on the bread.  He will need frequent sips of drink in between small bites. 
  • Cookies---he LOVES chocolate chip cookies & Milk.  I try to force whole milk on him as it has more fat & calories but he prefers 2 %
  • Potatoes--baked preferably loves them (loaded)
  • Pasta---chicken pasta dishes, or seafood (LOVES clam pasta), or red sauce with meatballs or sausage. 
  • Biscuits---with sausage or bacon or eggs---loves them
  • If you feel like cooking---he will literally eat anything :) Mac N cheese, ribs, pasta salad, sausage, burgers, potatoes, asparagus, mushrooms, collard greens are some of his favorites :)
***I am sure I've left things out----so stay tuned for add ons but this is a good start so y'all have an idea of things to bring :)

Thanks again for all you do!! And stay tuned for another blog soon on more updates. Lots of love! <3