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!

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!

What does Jameson have?

I often get questions like this....what disease does he have? What's wrong with him? I tend to be a little wary of explaining little man's diagnoses too in detail for people, mostly because I don't want to over-explain medical things and get people confused. So in the spirit of sharing and being open with all of our friends and family, I'm going to attempt to explain Jameson's genetic disorder again. (And hopefully in a way that's easy to understand)  :-)


We don't have a specific gene mutation (that the scientific community has found yet) that can help explain all of the medical issues that Jameson has. He has had a whole exome sequence done, which maps the body's entire genetic sequence looking for any mutations to help us understand him better. Since this science is still so new, his results have been put into a research study at the Mayo Clinic to try and determine if he has a new genetic disorder that hasn't yet been discovered. Since we don't have specific answers yet, its easiest for us to understand Jameson (medically) by putting him into two separate disorders.


The one most people understand, as we've had this diagnosis for nearly his entire life, is Cornelia deLange Syndrome. Its a genetic disorder that affects a lot of systems in the body including his small body size, Gastrointestinal problems, hearing loss, and distinct facial features including long eyelashes and thick hair. 


The second category that Jameson falls into that less people understand is something called Pontocerebellar Hypoplasia. This is a group of related conditions that affect the development of the brain. Sometimes you can point to a gene that caused the disease, and sometimes you can't. With PCH, the pons and cerebellum in the back part of the brain just never fully develop when the baby is growing. Unfortunately, its not something that can be re-grown later, and much of the time it will lead to degeneration of the brain. (Similar to Parkinsons or ALS)


Reading about PCH on the internet is very sobering. Many of the children don't make it to the second decade of their life, and I've known many parents and children through online support groups that have passed too soon. I don't like to talk about this stuff a lot because I don't like people to feel sorry for Jameson or for our family. I like to think of Jameson's life as having a purpose that is beyond my own understanding. However long God chooses for him to be on this earth with us will be a gift. And when the time comes for the Lord to take him back, we will be glad for the time we had with him and know we made each day count.


Love to you all and thanks for being our support!