Wednesday, April 17, 2024

Special day, change of plans, highlights and prayers up for tomorrow

Today was a nice and much needed break from the hospital. Didn't end the day how we would have wanted but this journey is full of ups and downs and we are used to flexing and having things change. It still was a special day for 2 reasons:


1. With help from a special friend (thank you Lexie 💗) the boys got a private tour of TQL Stadium home of FC Cincinnti. The boys received swag bags and P was gifted a scarf and a welcome sign on the jumbo tron. They outfitted a locker for him. Reid was spoiled too and it made me happy to see he was just as much apart of the special touches throughout our experience. A former player gave us the tour and he was so personable! A day they won't forget! One thing I really worried about prior to leaving was how we would pass some time in between days at Cincy Childrens due to the boys being 12 and all of the things we used to do at RMH, they have outgrown. Preston would spend hours in the play rooms and build trains and go to the childrens museum and all of those weren't options anymore. Thankfully, this tour was a great highlight and chance to fill down time in a super fun and special way. 


2. We paid a visit to Sweet Cheeks Diaper Bank today. I had the pleasure of meeting Megan Fischer, CEO and Founder, virtually a few weeks ago at work to discuss their visit to HappyBottoms soon (we love our friendship with Sweet Cheeks) and I couldn't wait to meet her in person while we were in town. It was wonderful being able to take a tour and see the amazing work they are doing and meet the rest of the team. The boys loved seeing another diaper bank after being at HappyBottoms and seeing our warehouse. Fun to see similarities and differences. It is crazy to realize how life has come full circle in my professional life. I've stopped and thought about it alot on this trip actually. The whole reason I moved to non profit work is because of our experiences with P's medical journey. I believe God had his hand in my change of heart years ago every step of the way. So rewarding to watch it unfold all these years later. Took me awhile but I have never felt more sure of the work I do and love who I get to do it with on a daily basis. 


Once we got back home and boys played video games to chill, I received our anticipated call from radiology. They can squeeze P in on Friday at 12noon for a CT scan. We planned to drive home early Friday morning and head straight home to have the weekend to unpack and get ready for next week but our plans for going home have now changed. We aren’t sure what that looks like yet. Most likely arriving home Saturday but still not sure. I have mixed feelings. I am so glad we could get this ct scan done to know what exact direction needs to be taken for his vocal cord situation. I am also bummed because Tim and I are exhausted and we haven’t even conquered procedure day yet (tomorrow) not to mention we are very eager to sleep in our own beds and relax a bit before a busy week starts. 


A few random thoughts and highlights:

  • Preston is sporting some new Cincy shirts he received and loving it! Snapped a photo at breakfast of him. 
  • While Preston was very much highlighted at the stadium today, Reid said “Preston is the one going through all of the surgery stuff so he deserved it” Reid also knows he gets to have both Sporting scarves now since P has a new FC Cincy one! Ha!
  • Reid loves the FC Cincy jersey he was gifted today 
  • We have a package arriving tomorrow from a friend- yay! I can’t reiterate enough the thoughtfulness we have received from so many that makes this journey so much lighter. Truly! 
  • I signed up for a knitting class tomorrow night at 7pm with Preston. I am so excited to learn with him! Jury is out if he actually shows up with me LOL 
  • McDonalds coffee is so good 
  • The built in white noise machine in our bedroom is game changing. RMH really has some magical touches that ease hard moments.
  • My boys are less than thrilled washing every dish we use by hand after breakfast or snacks and they haven’t complained once because I would murder them if even an ounce of complaint slipped out. We are SO blessed to be here and be on the receiving end of so many wonderful things to make this journey more tolerable. Doing dishes is the least we can do. How do I continue this situation at home? :) :)
  • The new gaming room is so great! It will be a life saver for Preston tomorrow morning to distract him from no food or drink starting at 9am. We check in at the hospital at 12noon. I will be posting O.R. time once I know and any updates on my fb page. Check there tomorrow. I won't be updating the blog during the day.               
  • I had a few pep talks with myself today once I heard from Radiology. I know we will get through whatever comes our way in the next day or two. Being together is what matters most. 
  • Having friends tell you "It's OK to feel the way you do" really helps :) 
We will take any prayer you have to spare for good news tomorrow. I asked Tim how he is feeling and he said "I am nervous. Expecting the worst and hoping for the best." I am right there with him! God is in control and we are continuing to do our very best and lean on Him. Thanks friends for being with us on this journey! It's always comforting to know we are never alone. 












We stopped for Graeters ice cream again today! It never gets old and we have a new friends at our favorite location. We plan to stop in and say bye to Sharon and Don before we leave. :)
Thank you so much for the treat today, Wiles Family. 






Boys love her branding 🐖

They even game in a twinning position 








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