I've been helping (up until vacation) Steve's dad with remodeling our bathroom so Steve will be able to shower. We are so grateful for Steve's dad to be putting so much hard work into doing the bathroom & will be so grateful when the bathroom is "usable" for Steve. No more portable toilet, no more washing his hair in the sink, & no more sponge baths! That's the way it should be for Steve with all he has to face & a HUGE thank you to his dad for making it possible!
Now Steve & I are finishing out another amazing trip. A friend of ours Corinne was able to get Steve & I passes to Disney (Park jumper passes) for 2 days. It was my first time & Steve hadn't been since he was a kid. It was so much fun! Totally went back to feeling like a kid & rocking the Mickey ears one day & then Minnie the next :) Before Steve got diagnosed we were planning a trip to go but right as he got diagnosed and we were planning a wedding in 2 months we canceled all those plans to spend the money on our wedding & life. We never got back around to planning another trip until Corinne told us she got us passes & it made me so happy that we were finally doing something we had wanted to do before he got diagnosed. See we practice what we preach ;)
The whole trip was amazing but I have a few favorites from Disney: Seeing the castle, seeing the dumbo ride, watching Minnie flirt with Steve ;), & the world tour in Epcot.
We love coming to Clearwater for several reasons, but one if they have causeways where you can pull over park right on the sand & be right on the water. This is about the only realistic way I can get Steve to the beach, because he is so sensitive to extreme heat or cold when he gets hot we can put him in the van with the door open so he can still talk to us but have AC.
We also got to spend time with our dear friend Lisa. I wrote last about how her husband, a friend of ours, Dan, lost his battle to ALS on Valentine's day. It was so good to see Lisa and see how amazingly strong she is being. I know Dan is smiling down from heaven so proud of her. We will always miss him & we are so thankful we got to come spend time with Lisa & can't wait til our next visit. Her & I are two peas in a pod :)
As usual as the end comes up we are bummed for the trip to be over however we have a lot of fun things planned the next few months starting with my sister making a trip to visit over Easter weekend. Always good to have visitors even better when they are family! :)
As far as an update on Steve: he is doing well. He is using his DPS (the diaphragm pace maker) several hours a day and he will use it extra whenever he feels he needs the extra strength. We are giving him amazing healthy shakes through the tube in the mornings and he will eat lunch & dinner. Some days we give him extra tubes through the day if he didn't eat as much. He is doing well with the tube & it has been such a great tool. That's the thing with ALS a lot of the options they have to help you seem very scary but you soon accept & realize that they are only tools to help make life easier. Steve has gained a lot of his weight he lost after surgery back but still have some to go. He is doing great & is such a strong fighter. I am very proud of him. :)
Okay back to enjoying our last chill day :) just wanted to give y'all a quick overdo blog. Lots of love! xo
Click here if you want to see ----> pictures from our trip
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