Allergies?

One of the avenues we decided to try with Henley was testing for food and seasonal allergies. Because I still have not been able to fully figure out the whole diarrhea thing and the GI procedures had not really given us the answers we were looking for at this point I made an appointment with an allergy specialist. Most importantly I was wanting to see if she was possibly allergic or intolerant to the one thing that she consumes so much of which is cow's milk. Our appointment with the allergy specialist went really well and it was very informative. We agreed to test her for all of the standard allergens and explained to me how people go about actually developing an allergy to certain things since none of us are actually born "allergic to ___". He also told me that even if the test come back and say she is not allergic to milk that she may intact be lactose intolerant and that could be causing all of the GI problems.

He asked me about Henley's medical journey and I told him the cliffs notes version of everything that had gone on up to this point. He sat there for a minute after I was finished talking and then said "I hope this doesn't offend you, but are you just putting off the inevitable surgery?" I know at the time he had no idea how this came across to me but it was exactly what I needed to hear. Adam and I have been praying for confirmation. Call me crazy, but I don't want just ONE doctor to tell me she needs brain surgery. I want EVERY doctor to tell me the same thing. Even though the decision is ultimately in our hands, I want it to be every doctors recommendation.

When I left that appointment I called my mom and told her what he said. Her response was "Leslie, it seems like everyone is on the same page as far as what Henley's next step is. Haven't 6 doctors told you the same thing?" I thought about it and went back through all of the doctors I had seen for her and realized this:

Neurosurgeon: Check

Neurologist: Check

GI Specialist: Check

Speech Pathologist/Feeding Therapist: Check

ENT Specialist: Check

Allergy Specialist: Check

At this point, we still have our final three neurological test to have run and we are waiting on some genetic testing results to come back to finalize our decision. I know it sounds like we are procrastinating on the surgery decision, but we just want to be 1000% sure that we are doing the right thing before we let someone operate on her brain and change her life forever. I say that because we know that once she goes through this surgery that there will be a lot of things in life that she will be prohibited from doing. Due to this type of surgery her head and neck stability will be compromised therefore making her a bit more "fragile". For instance we know that she will never be able to play contact sports, ride roller coasters or do anything else particularly jarring. We are also fervently praying that Henley is never in a car accident.