There is so much to fill you in on since my last blog post about Bayla, so I will be upfront and apologize for the LONG post. Last time I wrote, I told you how I hoped my kid was a mutant because it would give us some answers. Well, our last appointment at Mayo Clinic began like this:
Doctor walks in, smiles tilts her head and says “Why are you guys here? For another skin check?” Needless to say I had to do everything within my power not to hit the roof. The Mayo hospital had made this appointment because this doctor was as geneticist/dermatologist. They were hoping she had some additional insight into Bayla’s case, and when we got there she knew NOTHING about Bayla’s case. NOTHING.
On top of that we had waited at the Ronald McDonald house 2 hours away from home for an extra two days for this appointment. The doctor had no idea what we wanted or what to do with Bayla. At this point, both Bayla and I felt defeated and beyond frustrated.
The only semi good thing that came about from Bayla’s last appointments at Mayo Clinic is that her allergist had put her on a new medication that for a brief second we thought might be working. Fast forward a month later, and nope she’s back to feeling awful again.
Just to give you an example of Bayla’s poor little world, we were at a family function this weekend. We were around the campfire singing songs, and everyone was holding hands. A grown man went to hold Bayla’s hand saw her rash, paused, pulled away and said “Chicken pox?” In his brief second of self preservation, he seriously treated my kid like a leper and thought we would be dumb enough to bring a child with an infectious disease to this event. Poor kid can’t get a break.
In the meantime, I’ve been working with National Jewish hospital to get Bayla into their 10 day outpatient allergy, immunology, and eczema program. So far they have been amazing. They have been so proactive on letting us know our costs and how insurance works, but it comes from a standpoint of protecting us from surprises. They have already been so amazingly empathetic and kind that I am hoping that they really can find the answers we have been longing for Bayla. They’ve been given us the most hope we have seen in the last three years.
A lot of people have been reluctant to help us out because they aren’t quite sure why National Jewish Hospital is different that what Mayo Clinic has already been trying. There are SO many differences. First off, National Jewish tries their damndest to get to the bottom of what is causing the problem. Not just giving us a new medication and sending us off for another 2 months to see if that works.
While at National Jewish Hospital, Bayla is going to undergo a full panel of both blood and scratch allergy tests (things we had to fight Mayo Clinic to test for). She’s also going to be talking to an Immunology (immune system doctor), Pulmonologist (lung doctor for her asthma), Therapist (great bonding art therapy for kids in the program), and we will be leaving with a home maintenance plan that is tailored to Bayla not just a blanket “do the wet wraps” that Mayo Clinic sent us home with.
National Jewish hospital is giving us hope, but with a side of panic attacks. Just to fly Bayla and I there, which is strangely cheaper than driving, have a hotel stay for a few days (with prayers we get into Ronald McDonald House) and a little food it’s going to take almost $2000 to make this happen. That’s $2000 we don’t have. That’s not even including the $6000 minimum that we might be responsible for from the medical treatments.
It’s not like me to ask for help, especially money but Bay deserves the chance at being a kid, so if you have it in your heart and help us get Bayla to National Jewish even a $1 counts. We have a GoFundMe page for Bayla here. It also helps for you to share our story so others can help if they can. We have the plane tickets thanks to previous donations, but right now I am trying not to have panic attacks thinking about Bayla and I sleeping in the hospital lobby because we can afford the hotel. Ronald McDonald is a great option, but we can’t get on the waitlist until we arrive. Even from then it could be 5-10 days before we get a room.
So on October 13th, Bayla and I fly out in the wee hours of the morning to head to the mile high city. Wish we were visiting for more fun reasons, but we will take it if it means that Bayla has a permanent way to get better. Hope all is well with you and yours 🙂