I haven't had the energy to catch you up on a couple of things that are causing us to be concerned, in regards to the kids.
I'll start with Emmett because we learned something new about his fever disorder, while we were at the immunologist the other day.
She is the doctor that handles his fever disorder, as well as Gavin's Immunodeficiency, everyone's asthma and seasonal allergies. She also handles Elliott food allergies.
When it comes to Emmett's fever disorder, we have been chasing this thing since he was roughly a year old.
Fever cycles consist of many different and evolving symptoms. What we refer to as a *flare up, *presents with mouth sores, joints that are hot to the touch, massive mood swings and sometimes a fever. These symptoms are constantly evolving and while he would previously run fevers in the range of 103°F - 104°F, lately the fevers have been low grade.
One of the things that was seriously looked into was the cause of his joints getting hot. The initial thought was juvenile rheumatoid arthritis. Upon several visits with rheumatology, everything checked out. The big thing they look for is a high sed rate or erythrocyte sedimentation rate. In layman's terms, this means rate of inflammation in his body.
These sed rates have always been normal, at least when they have been tested.
We learned that his previous lab results showed is sed rate was 19, when normal is between 0 - 12. The lab work he had done the other day, showed his sed rate to be 20 currently.
That's really interesting because from what we can tell, he hit a flare within the last few days.
This is the very first time we have found any changes in his sed rates and while this isn't a good thing, it does give us a direction to go in.
Hopefully, this ends with a treatment that improves Emmett's quality of life.
Our next move is to hit rheumatology at Akron Children's Hospital ASAP. That appointment will be made in Monday.
In regards to Gavin, his issue appears to be new and it involves his vision. Gavin informed me yesterday that he was unable to play a game with Emmett because when he looked at the board, all he could see was black.
It's important to understand that Gavin is not a reliable source of information about what's going on with his body. That being said, we have to take this seriously because it's his vision.
We're waiting for an appointment with his eye doctor, also likely obtained on Monday.
This isn't entirely shocking because the overall state of his body is in a slow but steady state of decline. Until we get this checked out, we don't know if anything is even happening yet, or if it can be treated.
What's frustrating is that we've had many times where we discover new problems because of something he's told us, but we've also had many times where what he's told us never pans out.
We have to react regardless because the one time we don't, something will be seriously wrong.
