Change of Plans...

Hans is starting to perk up! Getting a few dark eyebrows too:)

So, yesterday was a rough day. We kept looking at Hans and having huge anxiety about his capability to enroll on a trial all the way across the country, that would require him to travel not once, but five times in the next four weeks, either that or stay for a month in Philly. Our doctors helped guide us and advise us that it's not in Hans' best interest to go that route at this time. Maybe the universe or the hand of God is leading Hans away from this option for a good reason. It's important for me to restate that it's not Hans disease burden that seems to be getting him down right now. It's some virus or infection that we've been unable to label. I keep repeating to myself Dr. Marachelian's proclamation after reviewing his scans..."He has a TINY amount of disease!"

For now, we are gonna stay put and get treated in our new home state. That'll be a change up. Hans is looking forward to it! We hope to get discharged from CHLA today. Hans has continued to have his headaches, but his Sodium came up, and he actually needed a bag of blood yesterday. The fluids has has received all week have likely diluted his red blood count...

We are going to go home and enjoy our weekend of just being at home! And, then, on Wednesday we'll come back to LA and finally knock out a treatment plan with Dr. Marachelian. I have also heard they might do an MRI of Hans' head, which I'm sure will make me quite nervous ! We have three top options already lined out, and we'll discuss those and more next week.

The upside of this inpatient stint was finding a gem of an Endocrinologist to follow Hans here. I couldn't be more thankful. She is adjusting Hans' two steroids and she believes it is possible to help Hans avoid getting sick this often by proper steroid replacement. Without any adrenal glands, he just gets beaten into the ground when he is sick. Our new Endocrinologist is already trying to think preventative dosing... it's a very good find for us here!!!

Thanks for your thoughts and prayers for Hans. He really looks okay this morning. He is up and eating a little, watching his shows, talking about what he hopes to have for lunch on his way home---chicken! I guess now we just pray that the best possible treatment plan will fall into place for our boy!