Thanks to my friend Therese for the fabulous visual of my life as a snow globe. You know how a snow globe works. Each time you shake it up something different happens and the whole scene changes. Well that's how life feels at the moment. So let's review all the goings on over the past ten days with the lovely Miss Courtney...
About 2 1/2 months ago her seizures began to increase, so the neurologist upped her meds. Seizures kept coming and she has not responded well to the change. Our only other choice for meds would be to giver her a cocktail of phenobarbital and felbitol the latter of which can cause aplastic anemia. That's a heck of a choice. NOT!
As we have been making the rounds for our yearly check-ups with the specialists in various fields ,each doctor has expressed their concern over the dramatic change in Courtney's alertness and activity. This leads them to use words like "lethal situation" and "compromised health".
Really...I hadn't noticed.
The complexity of Courtney's medical outlook and the enormity of what may be coming down the road for us leads one physician to make a bizarre comment about "how clean Courtney's wheelchair is. That must mean we're taking good care of her. Right?"
I am sorry is that an actual question? Seriously?
Today we met with the orthopedist, Dr. H. He has been with us for 7 years now and is one of the best. We talked about Courtney's spine and the severity of her scoliosis. As usual we came away with some answers and more questions.
She will not be having a steel rod placed in her back. This is a HUGE answer to prayer. The type of scoliosis she has cannot be helped with this surgery.
However he is concerned with her left shoulder, her inability to hold her own weigh while standing and her pelvic obliquity (one hip "sits" higher than the other causing a curvature in her lower spine). All of these things have shown up in the past three months.
So now he would like us to get a special Brain/Spinal MRI to take a look at the connection between the two, as well as the muscles surrounding the spine to see if there is any inflammation causing the problems.
***cue shaking of the snow globe***
We don't know if this is possible because of her VNS device. It may be incompatible with the magnets in the MRI machine.
***see snow globe moment. told you so***
So now we wait for the company to call back and tell us whether or not she can have the test.
Are you as confused as we are??? I advise a margarita to help you figure it out. Worked for me!
We have been to five specialists in ten days with three major procedures left. An upper GI (Aug 10) to make sure her Nissan wrap is still intact keeping her reflux in check. A swallow study (Aug 13) to determine if she can continue to eat solid foods by mouth or if she is aspirating too much. Finally, Courtney's VNS battery replacement surgery (Aug.25) to make sure she is powered up for the next five years.
Yep, life is a big fat snow globe! Shake, shake shake. Shake your grove thing! Hey, it's a little cold in here. Want to join me?
Labels: Courtney's World