Making Memories

What a great month for the little man! We have gone full steam ahead with Jameson's bucket list and are making efforts to get out there and make memories and experiences for him. Of course it wouldn't been in true Jameson fashion without a few hiccups along the way….aka a late night ambulance ride last week to the ER….but the bumps in the road sure are a lot easier when you see the amazing things he's doing.

As most of you probably saw on Facebook, little man has gotten his sun goggles and they're working like a charm. I cannot express the feeling of being able to finally take him out into the world after two years of being inside. Even something as simple as sitting out on the back porch or sitting in the grass with little man being able to look up at the clouds is surreal. I was so happy to be able to share his first experience being in a swimming pool at our family reunion with everyone cheering him on. Seeing these memories made for him through other people's eyes is also an amazing gift and makes you incredibly thankful to God.

We continue to work hard towards giving Jameson the best life possible, full of adventure and love. We also continue to work hard at giving him access to the best doctors and treatments available. Today we are heading back to the University of Iowa for a visit with Pulmonology. She will be taking a good look at his lungs and breathing. September we have more big appointments with his Nephrologist and Urologist who watch his kidney and bladder function. Then in October we are back to MN for another inpatient stay while they watch him on vEEG to look at seizures and he'll be having another MRI. We are also still waiting on results back from his Whole Exome Sequencing which will be very exciting when we get those! So another busy few months but that is the life of our tough little man!

As always, we appreciate everyones love and support. We cannot thank you enough for all the kind words and messages. It's because of all of you that we have as much strength as we do to help Jameson fight his battles and have a wonderful life. Thanks again!

The Adventure List

I came to a big realization this week. It actually hit me like a ton of bricks. It all started when little man and I had an appointment with one of his therapists and she mentioned cutting back on some of his therapy appointments. My first reaction was one that many mom's would have, absolutely not!! We're trying to fit in as much physical, speech and occupational therapy as we can so that Jameson continues to develop. But her reasoning behind it wasn't what I expected.

After two years of being in survival mode, trying to keep little man in a bubble and safe from the big bad world around us, I'm starting to realize that he isn't fully experiencing life. His therapist has helped open my eyes to what quality of life can look like. These appointments every week, while helpful, will not give him the same therapy of having life experiences out in the world. Laying in the grass and feeling the breeze is a life experience. Visiting an art museum is a life experience. Heck, even sitting with mom in a Starbucks and people watching is a life experience! :)

So after much thought, mom has come to the realization that therapy can come in many forms. I may not have control over when God decides to take my little man, whether it be 5 years or 10 years or 30 years, but I can give him the fullest life packed with adventure and experiences. And that might be the best sort of therapy he could have.

My next goal is to work on a list of adventures for little man, sort of like a bucket list of things we need to accomplish but with no end date. It will be an evolving list of ideas, no matter how big or small, that can be checked off one by one. Please fill me in on any and all ideas you might have an I'll add them to our Adventure List! So far we have......

• Look at art in a museum
• Sit in the planetarium at the science center
• Visit Build a Bear workshop and make a friend
• Sit on Santa's lap
• Go to an ocean and put my feet in the sand
• Swing on a playset
• Take a ride on a boat
• Meet Elmo
• Go sledding
• Lay in the grass
• Watch a live band
• Visit an aquarium and pet a dolphin
• Make art with my hands
• Go to Disney World!

Never Give Up

I found this quote the other day and it really resonated with me. It takes a lot of strength to take the jabs and punches of life and to keep going. My situation with Jameson is extreme but not unique. Everyone has something they're going through that can feel like it would just be easier to give up. The true strength within us all comes from what we do when life has knocked us down to our knees.

Little man has been home from the epilepsy unity at the hospital for about a week. He has not had a tonic - clonic seizure since the Saturday before we left. (Thank you God) We had a lot of anticipation for our trip to MN, and while I'll admit that we weren't completely happy with the answers we got, I also took on a new perspective. Jameson is a complex little boy and his medical issues are not black and white. He is the epitome of gray zones. He lives in a world of rare cases and the small percentage of patients that don't respond to treatments how they should. He has a severe and complicated form of epilepsy that is difficult to figure out or medicate. The best we all can do is put our faith in his team of doctors and let them guide us in this journey.

Seizures are terrifying, I won't lie. No one can ever get used to watching their child have a seizure and stop breathing....but you can learn to help them in whatever way you can. I have no control over Jameson's brain activity going haywire and into a seizure on a Saturday afternoon, but I can put him on his side and give him rescue medication so that the seizure stops. That is something I can control. And the rest will get easier with time. Just like when Jameson was a 7 lb, 5 week old little peanut and his feeding tube was surgically put into his stomach. I didn't know what a feeding tube was, let alone how I could handle taking care of it. Now, 2 years later, tube feedings are second nature. Same goes for his vesicostomy. When they told me he would need a hole in his bladder that goes straight through the skin and leaks out his abdomen, I cried. How could I do this? This isn't right and it's not fair. But like everything else, it becomes a part of life and no big deal. Seizures will be the next hurdle, and they too will become a part of life and we'll take it as it comes. I have faith that there is a plan for it all.

Thank you everyone for your continued prayers for Jameson and our whole family. While some days can be harder than others, we are always so grateful and proud to have such amazing friends and family that love and support little man in his journey. What a journey it is! :-)