Today was another appointment in the long line of appointments that we have coming up. Today we saw the neurosurgeon. The good news is that the tumor on his pituitary gland isn't a have to surgery tomorrow kind of thing. The doctor actually said that he would rather try and handle it medically first, before trying surgery. So as a result of that he wants us to visit an oncologist to see if there would be a type of treatment for Scott. The tumor is not cancerous, benign, in that sense.
The bad news is that he has some major thickening of the bones in his skull and will likely, at some point, need to have surgery to remove the build up of bone. The build up is part of the McCune-Albright Syndrome (MAS). He might have to have this done more than once over his lifetime. We have a nuclear bone scan scheduled for Wednesday, August 20th and an appointment with an orthopedist on Friday, August 22nd. We'll find out then if he has any of these build ups on other bones in his body.
We both feel like we know a little more but still need to know a whole lot more. We have several referrals that we are waiting on still and I don’t know how many more appointments to set up. Right now my mind is spinning and I am feeling totally overwhelmed! This is something that I never imagined that I would be going through as a parent. It is unbelievable. But, here we are and I am trying to rely on the Lord and rest in His grace, moment by moment.
Please pray for these things specifically:
1. Miraculous recovery.
2. Referrals would continue to be approved by insurance company and appointments would be scheduled quickly.
3. We haven’t told Scott anything yet, just that we are trying to figure out why he is so tall. Please pray that we have the wisdom of what to tell him and when.
4. That we are directed towards the right doctors, treatments and tests.
5. Strength for the family.
Thank you all so much for you support and prayers!
