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!





Tuesday, August 1, 2017

A whole new adventure

Well, its been about a month since we got home from our 5 week hospital stay at Mayo Clinic, and Jameson continues to amaze us! The surgery went fantastic and the recovery was easy for him this time around. I have no doubt in my mind now that we 100% made the right decision with the tracheostomy. Admittedly, there is a lot more work for us, and some aspects of our lives are more difficult now, like being able to easily travel or go on an outing. First, we can no longer be in the car with him by ourselves. And secondly, he comes with a TON more equipment now every time we leave the house. I also haven't gotten comfortable with the idea of being more than a half hour away from our Children's Hospital yet, but I'm sure I'll get there eventually.


Even though there's been challenges, he has been thriving since coming home. Just in the last couple months, he's started to really grab things intentionally. The best part of that is he loves to grab faces, which just makes your heart melt every time! If I get right up near his face and talk to him, he will take both hands and grab at my cheeks, ears, eyes, anything he can get his fingers on. Its like his version of saying, Hi Mom...I love you too! <3


Our big news that will be coming later this month is that Jameson has a nurse! After 4 years of choosing not to do nursing care, we've finally decided it might be time to try it out. One big reason for choosing to do it now is that Jameson wouldn't have been able to go back to school without a full time nurse with him. (Just too much medical stuff for the staff to handle anymore) So if all works out, the nurse will go to school with him in the afternoons on Monday, Tuesday, and Thursday. Please send up prayers and good vibes that our first nursing experience goes well, and that the person they've hired for him is extremely compassionate and loving towards Jameson. I have faith that God is putting this situation into our lives for a reason, so I will trust that he has it under control.


Thanks for stopping by and checking up on us. Hope everyone is having a wonderful summer!