On September 11th we are heading to Toronto once again. We will be staying overnight for two days. On Monday the 12th, I am scheduled for several tests. I will be starting at Toronto Sick kids at 8 am with a sweat test, to test the sodium level in my sweat, and a NPD test (which is done only at TSK) to also test more accurately for sodium released in my nasal cavity.
I then go over to St. Michaels for a CT scan and chest x-rays. When those tests are done I go on to the CF clinic and do my pulmonary function test, to check my air flow. Somewhere in there I will be doing bloodwork.
At 1pm I meet with Dr. Liz Tullis, the CF doctor, who I have been told knows a lot about mutations in the CF gene. I hope with all these tests, that she will have some answers for us.
So a crazy busy day, I am sure full of ups and downs.
Then Tuesday the 13th we go back to TSK to have Annika seen by her doctors and the rest of the crew. I pray she has gained weight. She seems to have grown taller. Now if you asked me 5 months ago "would you ever put butter, and salt into your child's cereal (let alone feed her cereal...lol)" I would have replied "are you nuts!" But we do what we have to do.
I think the hardest thing about this disease is the lost of control. Before the disease came into our lives , we had a false sense of control and security, now that control has been stripped away.
I am now vaccinating my daughter(which I still have problems with.....Especially the flu vaccination because it still has mercury as a preservative in it) I pray everyday for guidance and strength.
I am sure life will get crazier!