We’ve had a refreshingly NORMAL and boring day!
I had a reassuring chat with Gannon’s neuro surgery team – I’m going to explain this in kind of a weird way so bear with me.
Spinal cord: horses tail
Fibrolipoma: piece of gum on the wall of the stall
Once in awhile the horses tail might get stuck in the gum and cause an issue but for the most part the horse doesn’t even notice. BUT for a very small percentage of horses, it does cause an issue (tethered cord syndrome) and the gum needs to be removed from the wall of the stall. But honestly, it’s just a tiny piece of gum and could it really cause that much trouble? There are probably a lot of people in the world who have gum on the side of their stalls and don’t even know about it but there are also people who have gone on the side of their stalls and it causes a lot of entanglement.
Make sense? So we have the telehealth conference call on June 25th with neurosurgery to discuss whether or not the gum needs to be removed off of the stall (ha) or whether or not it is contributing to anything.
Then back to Milwaukee for a neurology appointment/get blood drawn for genetics/get Botox in the bum on June 30th. Then another big visit with the muscular dystrophy, neurogenetics, and a couple other people on August 10th.
For now, we will continue in Milwaukee until we have a diagnosis and then transition care back to the University of Iowa. It’s a long trek but we feel like we are getting places we didn’t with U of I. In their defense, neurology wasn’t even like a possibility/thought in anyone’s mind until the past month but Children’s is really making it happen.
I work tonight and tomorrow night overnight. I haven’t worked an overnight since April so wish me luck! I got a hotel room (deeply discounted for hospital employees) for tomorrow to stay in town and sleep. Lots of driving – lots of time away from home.
We had SUCH a normal day, it was so great. The boys played outside all morning (no clothes required appearently) and I watered all my flowers that Craig tried to kill while I was gone.