Update a Little Late

I apologize for slacking on the Addy update. We went to the Dr Monday morning. It was a LONG process. We were only there to get a CBC and speak with the Dr about test results and we ended up being there over 2 hours. UGH! They are NEVER on time...but they do take good care of my baby so it is worth the wait (so I tell myself). The Dr confirmed the one bad genetic test came back negative! Half of the ALPs test came back negative and we are waiting on the other half. It should be in by next week. Addison's counts continue to be down and she needed platelets. She will get platelets weekly. We opted to do platelets Tuesday so that she would have enough to get her through the long weekend. Here counts were even lower Tuesday (white blood count being the lowest they have ever been) and we were there for FOUR hours for what should have taken 2 hours. UGH!!!!!!!!!!!!!! Oh and they had to stick her twice for IV to work. Not a happy baby or mommy but Addison really is such a trooper. She watched a little Blue's Clues and then I followed her around with her IV pump while she played with toys while the platelets were tansfused into her body.

After speaking with the Dr the plan as of now is to continue to wait (boo). They want to observe Addison for a solid 4 weeks. They will then do a bone marrow biopsy to confirm her current bone marrow cell production % (she was at 15% last time and they anticipate lower now) and make sure no leukemia cells are present. I am sick with worry about Leukemia. The same time they do biopsy they will put in a port. I am not happy about this, it makes my heart hurt to know Addy will have a port for about 6 months to a year. This is what cancer patients receive. The purpose of the port is to avoid sticking Addison with an IV every day/week for the next few months so I guess that is good. I just don't like the idea of her having something implanted into her chest near her heart. Then she will stay in the hospital for no more than 5 or 6 days and receive the ATG treatment. Addison will not have an immediate response to this treatment. It typically takes between 30 and 90 days before you see her CBC rising and it could even require a second dose of ATG. Let's pray we see a response in the first couple months. PLEASE Lord let her respond fast! It is helpful knowing more of what the plan will be...this is all based on the two pending tests coming back negative. This disorder is full of waiting...as long as the outcome is positive I am fine waiting. My poor stomach isn't thrilled but that's OK. :)

We love you all and appreciate the prayers...please keep them coming!