Friday, December 22, 2017

2017: Another crazy year!

As the end of 2017 approaches, its amazing to reflect back on what a crazy year its been. 6 hospital stays totaling nearly 7 weeks inpatient. New equipment. New medications. Many road trips to the Mayo Clinic and many many doctors appointments. Through it all, Jameson has been the most amazing and inspiring little boy. One of the greatest gifts that God bestowed upon him, was his sense of peace with everything around him. He is one the happiest, most resilient and inspiring souls I've ever met. No matter what challenges he faces, he takes it all with amazing grace and always a smile. I don't think I could ever truly express in words how amazing he is.


Thank you all for being an awesome support system for our family and for Jameson. I hope that however long he is with us, he inspires and teaches things to everyone that knows him. He has definitely taught our family so many things in just the last 4 1/2 years. Have a wonderful holiday and happy new year!

Monday, October 30, 2017

Biopsy Results

Just got a call from the surgeon that did Jameson's biopsy last week and he gave us some great news. Little man does not have hirschsprungs disease! They were able to find the ganglion nerve cells that they needed to, which is fantastic. If he had been positive for hirschsprungs, we would've had to have intestinal surgery in the near future, so this was wonderful news to get on a Monday.


We will continue to work on Jameson's motility and constipation issues with medications, abdominal massage, and as much extra water as he can tolerate. Any time a surgeon calls and tells you no surgery is a great day!


Other than that, little man has been doing really well. We did make the decision to pull him out of school for the remainder of the winter season. He already has gotten a couple long illnesses with hospital stays in the last couple months, so I think this is the best thing for his health. However, this year we are working to get him set up at home and still have his teachers come out once a week to work on goals with him. He will also get to Skype into the classroom each day for story and song time, so hopefully this will make it feel like he's still getting to interact with the kids just in his own way. I think this will probably be what we have to do each year with the cold and flu season, since he tends to pick up anything and everything out there. But hopefully with this new homebound service we're working on with his school, it can still feel like he's a part of it.


We return to Mayo for a couple days of appointments the second week in November, and then hopefully get a nice break from Rochester for a few months. We've been there three times in the last 6 weeks and two short hospital stays at Blank Children's, so we're looking forward to a nice break from doctors for a while. Fingers crossed! Thanks for checking in on us and the continued love and support for Jameson and his journey!



Wednesday, September 20, 2017

Blessed

Its been a while since my last blog, and I just wanted to give a quick update on how well Jameson has been doing. We have been completely blessed by God with how strong and healthy and happy he has been in the last month. His nurse, Olivia, has formed an amazing bond with him; and he's been able to enjoy going to preschool 3 days a week in the afternoons. None of this would've been possible without our decision to go ahead with his tracheostomy surgery and start nursing care. His lungs have been getting stronger and he can sleep comfortably without the constant need for suctioning or oxygen.

We have been able to do more fun adventures and check things off our bucket list. Jameson took another trip to the zoo last month, and had an amazing time. Also, last week he practiced some putting with grandpa and even hit a hole in one! If you haven't seen the video on facebook, make sure to check it out! :)

At the end of October, we have another trip up to Mayo for appointments and tests. He will finally be getting the rectal biopsy to test for Hirschsprung's Disease. This will test the nerve function in his colon to see if part of his motility and constipation issues have been from the nerves not working correctly. If it tests positive, we will be having some long and difficult conversations with his team about how to proceed. There is no easy solution, and all treatments would involve major surgery, so we will cross that bridge and make those decisions if/when they come.

Thanks for stopping by and continuing to follow along with Jameson's journey. We appreciate all the love and prayers as always!