7 years old!

I've been awful at keeping up on these blog posts lately, especially when I don't feel anything particularly important to write about.  But it is good to keep up on it at least a little bit, especially for my own sake reading this back in the future and remembering every wondeful moment with J-boy.

Last weekend we celebrated Jameson's 7th birthday. 7 YEARS! I didn't know if we would get 7 years with this beautiful boy, and I'm trying to enjoy and make each one really count. Our original plan was to take Jameson to his first professional baseball game at the KC Royals Stadium, but with the coronavirus going around we had to change our plans. We ended up just spending a nice weekend at home and it was wonderful. It was a train theme, and I spent all day Saturday making him a train cake! :-)  We also visited the tulips in Pella and the Brenton Arboretum. This virus has made us really make an effort to get out of the house and enjoy the outdoors, which has been a blessing unto itself.

I am feeling incredibly thankful for 7 years with J, and hopefully many more that he is healthy and happy. Each year feels like a blessing.

Exciting News

As we come to an end of 2019, and the 6 year anniversary of trying to keep up with this blog, I am feeling blessed to be sharing another holiday season with little man. He has had a challenging year....so many trips to Rochester, hospital stays, lab draws....its been a lot. The last few months especially have been hard with little man's seizures and movements getting so much more intense and frequent. There are days that we can't see the sparkle in his eyes anymore. :( When we came home from a very difficult hospital stay a few week ago, I made a conscious decision to start focusing solely on Jameson's quality of life. There is no way for me to know, but if I knew I only had 6 months or a year left with him, how would I want to spend it? My biggest hope is having years more of this life with him, but if his life is becoming less enjoyable for him, then I don't want him to suffer in order to stay here longer for me.

So, with all of that going on, we have decided we are going back to Disneyworld! We were so incredibly blessed to have had a trip there last year for Jameson's Make a Wish, and it was the most amazing and wonderful week of our lives. I hope we can get a little bit of that magic back for him to get to enjoy again. He has had such a tough year, he completely deserves it!! :)

31 days until Disneyworld!!!!

Thanks for stopping by and checking in. Love to you all and enjoy the holiday season!

Looking forward to Fall!

Hi all! It's been a few months since I blogged, so why not? :)

Jameson has been doing pretty good since my last update in June. The biggest struggles have been seizures (always!) and urinary tract infections. We are coming up on the 5 year anniversary of J-boy getting his vesicostomy to help prevent worsening function of the kidneys due to reflux. The vesicostomy has been a blessing in that we've had 5 years of stable kidneys!! But in the last year or so, we've been struggling with infections in his bladder because of the vesicostomy being a opening that allows all sorts of bacteria to brew and cause mayhem. This is a work in progress trying to figure out what the right thing to do is. Our last visit with urology was good, and we're adding a cranberry supplement to his list of medication to see if it helps at all. We've tried daily antibiotics in the past, but they cause their own host of issues. So for now, we'll keep working at it and seeing what our options are in the future. (Hopefully no more surgeries!)

One big thing that has been changing is my time with buddy. I've been blessed to be working the last 5 1/2 years for a wonderful company that is great with flexibility and work/life balance. So, starting a few months ago I transitioned to working in the office on Mondays and Fridays and the rest of the week at home. This has allowed me more time at home with Jameson, which is amazing. I love getting him out of bed in the morning. I love getting to hang out with him all day. It is a great balance and I've been very blessed at this company to be able to do it. I still don't work on Wednesdays, and my goal this fall will be to do as many fun things with J-boy as possible while school is in session and most places are open but not busy. Zoo, Science center, Art museums, Movies, etc!

Thanks for stopping by and checking out our update. Hope everyone has a wonderful end of summer and fall! :)