Tuesday Dr Update

I should probably wait a few hours to let myself digest everything before updating the blog but A.) I don't think I will be any less confused in a few hours and B.) I run the risk of not remembering accurately.

Addison and I got to the Dr office this morning at 8:15. I was determined to be the first one there to hopefully minimize our wait time. I was definitely first, I had to turn the lights on in the office! Why they schedule appointments before they are ready to work is beyond me! We were checked in quickly but then waited for at least 30 minutes until we were sent to a room. They pricked Addy's toe for the CBC which is routine to check her counts. The nurse came back in and said her platelets were a 25!!! "A 25?!" I said. This is very odd to me since she only received 6 units of platelets last Tuesday which is 3 less than the week before and last week after a week her platelets were an 11. Of course my heart fluttered with a new sense of hope. Then I looked at her Absolute Neutrophil Count and that was 390!!!!! 2 weeks ago it was 30 and last Monday it was 90 and Tuesday it was 70. Charles and I asked the Dr last week if we should get excited and she said no not with such a low increase but she said if it was over 200 then she might get excited....well today it was OVER 200 at nearly 400!!!! OK so before I get my hopes completely up that maybe God is just curing her with one of his miracles the Dr comes in and tells me not to get too excited. Boo....how can I not? This is a new Dr whom I have never met so she doesn't know Addison's case really well. I keep wishing our normal Dr would have been there because maybe she would have had the same hope as me! Then she lays on the not so good news...the PNH test which was abnormal last time came back abnormal AGAIN. This time the abnormal parts were reversed. The first time her RBC looked normal and the WBC were slightly abnormal...this time it was opposite. The Drs do not know what to make of it so they decided to draw the blood again. Yes this is the 3rd time they are drawing two vials of blood for this test. So the knot quickly returned to my stomach as we have to wait yet another week to know if she has acquired this terrible blood disorder that will never fully go away if she has it and has extremely high chances of turning to cancer later in life. So back to praying for God's miracle to heel my baby girl.
The Dr also gave me the treatment info which we would have started this week if that test was completely negative. The treatment for PNH is completely different than just Aplastic Anemia so we need conclusive test results before moving forward. She also gave me a prescription to meet with the surgeons to better understand the port. I am really not happy about this port. They have to cut through chest muscles which will make poor Addison very sore for a few days when she moves her arm. The good thing is they won't hopefully have to poke her veins anymore. They also confirmed that when she in under for the port insertion they will also do a bone marrow biopsy to check cellular production and run some additional genetic tests on the actual marrow. Apparently that is normal procedure when you have Aplastic Anemia. My guess would be that since it is such a newly discovered blood disorder they check genetics on every case they see to see if they can uncover some type of genetic makeup behind the disease. Again...I am no Dr but that is my interpretation.
So three hours later and 6 vials of blood later we got to go home. Addison was so tired she fell asleep the second her bottom hit the carseat. We are home now and have a full day of playing ahead of us! Lots of love to everyone and please continue your prayers. We greatly appreciate all of them!