A big unknown. That is what is ahead of us. If you remember, Lil has hearing loss. She also has lesions on her tonsils. Those are what we can see. What we suspect is that she also has lesions on her esophagus. We know that she has significant reflux so there is a question about how much and if any damage that is causing especially with all of the vomiting. The doctors' solution to all of this is to do a couple of things. They are going to put tubes in her ears, remove her adenoids, remove her tonsils and scope her. They like to do all of this in one shot so they only have to administer anesthesia once. All of this is going to happen for Lil on September 15th. For a normal kid this would not be a big deal and they would most likely not even stay in the hospital. They are going to admit Lil and keep her for a few days or as long as she needs to stay. We are going to give her steroids and keep a close eye on her. We know that Pyoderma Gangrenosum reacts to skin trauma. When Lil's disease was active, every skim trauma (every time she scratched herself, every needle prick, everything) caused a lesion that grew out of control). So the question is, what is going to happen when we start to cause trauma to these lesions on her tonsils? Maybe nothing because we just increased both of her meds. That is what I am hoping.
Unfortunately, although we had about three weeks off of the super runny nose and coughing fits, they are back in full force. And as I said before the grunting she does when her throat hurts is back as well.
For now, we are planning her birthday party. She is so excited and we are just going to have a good time. She absolutely loves her birthday parties. All she cares about is that we have it at the pool and that she has a piñata! She has not asked for anything else. Well, she keeps asking for people to be there...
So we will plan her a great birthday party, enjoy every second and then plan for surgery and hope everything goes well.
