Hello!
It has been a while since I've given any update to my site.
I have had my website "under maintenance" since April of 2023 while we have navigated the world of chronic health problems with my toddler, Bennett.
Now as I work on revamping my website and my store presence, my main focus is to raise money to pay off his medical bills and special needs, and I would love to share his story. I want to raise awareness for undiagnosed illness and the ways it really impacts us in order to hopefully cultivate empathy in our community.
I will try to keep our story short and easy to read, but I will apologize in advance for any ramblings.
I would love to give our whole history, however, I think that blog post may make up an entire chapter book. so today I will give the highlights that currently effect us the most and then as time goes on, I will add further blog posts that share more of our back story.
In 2023, across the span of 3 admissions, Bennett has spent a total of 31 days inpatient at Children's Hospital of Colorado, 7 of these were in the PICU unit. He has gone under anesthesia 3 times, has had countless appointments in Denver with several different specialties, has had PT, OT and feeding therapy appointments weekly, spent 6 months with an NG tube, and now has a g-tube with no expected end date.
At this time Bennett is 23 months old. For a typical child (yes even a preemie) by the time they reach 2 years old, they should not only be walking, but running, jumping, dancing, kicking, etc. They should be able to sit unassisted (this seems like a given). They should be able to use a fork or spoon (at least relatively well), scribble on paper with pens or crayons, and be able to stack 2-3 objects. And of course by this age their diet should consist of primarily solid foods with milk and water used for hydration.
Bennett still struggles to roll over in the direction he would like, and often seems to fall from his belly to his back, and then has to really work to roll from his back to his belly. He is learning to army crawl and getting quite fast but it is mostly poorly controlled movements with very little coordination. He is unable to pull himself to a sitting position, and if put in an unassisted sit, he quickly falls over with very little attempt to steady himself, sometimes with no attempt at all. He is unable to bear weight on his legs so of course he cannot hold a standing position and makes no attempt to walk. His hips, knees and ankles are usually in a very tight and locked position which not only effects his skills, but can also make holding him very difficult as you cannot put him on your hip as easily as you might be able to with a healthy toddler. He is unable to throw objects, he has a very hard time extending his fingers or flexing his hand in order to hold utensils well, stack blocks, it even effects his ability to drop things.
He struggles to eat or drink as he is prone to choking and aspirating, which is why he is tube fed with a high calorie formula. Tube feeds make up 80-90% of his daily calorie intake.
Unfortunately we have not had good luck at Children's hospital in finding doctors willing to put in the work to help us find answers. It has been so frustrating to constantly be fighting for my son to be seen and taken seriously. In January we will be traveling to Shriners Hospital in Salt Lake City to meet a doctor specializing in Neurodevelopmental and orthopedic disorders and we are so hopeful that we will be able to better support his physical needs after this appointment.
He will also have another swallow study done in January, which is a series of xrays taken while drinking. This test will hopefully give us better direction for feeding therapy and see if he has made progress in the last 6 months.
This year has been very hard on my family mentally, emotionally, physically and financially.
I lost my job in April of 2023 when Bennett was admitted for the first time this year, it was a 21 day stay and we came home with an NG tube. I was the only one trained on the care and replacement of the tube so it was very hard for me to be away from him for any amount of time. Now his g-tube is slightly easier to manage, but it has still been incredibly difficult for me to find work that allows me to be as hands on with his care and therapies as he needs me to be. We are praying that something comes up in the new year that meets our financial needs.
This year we have accumulated over $15,000 in medical debt, and with the help of family and friends and frugal living, we have managed to get that number down to $11,000 and in the new year we expect the debt o rise faster than we can dent it.
I have spent countless, countless hours on the phone and filling out applications for any sort of relief. Hospital financial aid, SSI, Medicaid, local grants, anything and everything and we qualify for none of it... For Medicaid and SSI my husband makes only $300 a month too much... We are hardly able to cover our living expenses but somehow we make too much for any help.
I will continue searching for reliable work that allows me to care for my son, and in the meantime I am hopeful that selling my crochet work will generate enough to keep making small progress toward our debt.
We are so deeply appreciative of anyone able to support my small shop.