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! :)

Changes are OK

Welcome back, its been a few months since my last blog so I figured its time for an update. Sometimes it hard to find the right thing to write about, and a lot of the time I can go months without finding the motivation to blog. But when something hits me, the words just come flowing out of my brain, through my fingers, and onto the computer screen.  :-)

We have been incredibly blessed with Olivia, Jameson's daytime nurse, for the last 2 years. She is a great nurse, and she cares about Jameson as if he were her own. She also comes with an amazing gift in that her dad, Jeff, is a recreational therapist that works with developmentally disabled children and has decades of experience doing so. He came to our house a little over a year ago to meet Jameson, and was able to make all of these amazing adaptable toys for him that he has enjoyed very much. It can be hard to find the right toys for kiddos like J, because they just cant engage with them or have the physical ability to use them the way a typical child would. So having these gift from her father was such a blessing.

Over the last year, Jameson's abilities have unfortunately declined quite a bit. He has been having more difficulty engaging with his toys or seeming very interested in them at all. When we were at the hospital last week, I had a very emotional conversation with his palliative care doctor about my fears with him losing interest in the things that used to bring him a lot of joy. Watching videos of him from 1, 2, even 3 years ago and seeing that smiling boy that we haven't seen as much of lately was something I needed to talk about with his doctors and just emotionally come to terms with myself.

After we got home from the hospital, we got a visit from Jeff and had to explain to him as well about the changes Jameson had been going through and the sadness of not seeing him enjoy the toys that Jeff had spent all that time making for him a year ago. But instead of the sadness being echoed back to us, Jeff had nothing but optimism back for us. He sat and worked for hours with Jameson on new ways to make his toys work for him, and how to give him joy from each of them. Instead of having a toy sitting on a tray for Jameson to reach for, we bring the toy down to his hand level and let him enjoy it that way. Instead of expecting him to grab at something in the air, maybe we bring it down lower and let him move it around in a more comfortable way for him. Maybe instead of making him physically engage with a toy, we just put it on a table and let him enjoy watching it. It's all about adjusting your expectations on how things "should" be, and just letting him show us how it works best for him. It's amazing how you can still be learning that 6 years later.

So the point of this whole blog to say that changes are OK. Jameson is going to change, grow, morph, and sometimes regress throughout his entire life. That is fine. It's normal, or as normal as can be expected in this crazy journey we're on. The most important thing to remember is that you will get through it, and you will adapt. It's ok to be sad about things, but being sad doesn't help Jameson. If anything, it just keeps your mind from thinking of all the other things you do have and how you can make things work better for him. That is the important lesson for me to remember today, and always.

Winter 2019 Updates

I realized its been a long time since I wrote a "Jameson update" blog, so I decided what better to do on a Friday afternoon. :)

So far, 2019 has treated us pretty well. Making the decision not to put little man in school this year was bittersweet but obviously the right choice. The amount of illnesses this winter compared to last winter is not even comparable. He has been so much healthier! We just dealt with our first winter hospital stay and pneumonia, but little man was able to get his lung function back very quickly.

The biggest issue we've been dealing with the last 6 months has been urinary tract infections and antibiotics. With the vesicostomy, there is a constant stream of bacteria that is being introduced into his bladder all the time. Since he doesn't have the correct nerve function to tell him when his bladder needs to be emptied, he tends to only empty small amounts at a time, which in turn makes the bacteria sit in the bladder longer and create infections. We are trying to help him with that now by catheterizing the vesicostomy 3x a day, but UTIs can still happen. Each time he gets a bad UTI, he has to go on strong antibiotics to prevent his kidneys and bloodstream from becoming septic. And that in turn creates problems like C Diff infections in the gut. When you go on antibiotic after antibiotic, the medicine strips out all the good bacteria sitting in your gut helping you with your gastrointestinal movements. This causes bacteria like C Diff to run rampant in your GI system and cause a lot of pain, discomfort, diarrhea, etc. The only solution to a bad C Diff infection, is more antibiotics!! (Plus lots of probiotics - when we can do them)

We will be returning to Mayo to see our doctors a week from Tuesday, so hopefully we will get some new plans in motion to help figure out what to do about this constant cycle of UTI-antibiotics-C Diff-more antibiotics. Sometimes it can be hard to know what the right things to do are, but I trust his medical team will always do the right things for little man and strive to give him the best quality of life possible.

Thanks for checking in as always! :)