So Macy had her echo done almost a week and a half ago now. No word yet from the Dr. office. I should probably call to find out the results, but a part of me just wants to believe since we haven't heard anything that that means everything is fine. I'm afraid if I call it will be bad news. I guess I will just give it a few more days then it will be time to find out.
We received the report from the hem/onc appt. about her blood work and it freaked me out for a minute. It says her neutrophils were low and that she had mild neutropenia (I believe those are the white blood cells that fight off infection). However, I looked at her actual #'s and they are in the normal range. I brought this up to her Pedi today and she also said that those numbers are in the normal range so I am hoping her hem/onc Dr. just made a mistake when she wrote the report.....I will have to contact her to see. Sometimes it would be nice if my brain didn't know the things it knows...it would be very nice to turn off knowledge sometimes. I guess in order to cope I have made myself not think of what is to come...it is something that is far off in the future sometime. But when I saw that report it made everything so much more real...like that far off future was starting to happen now. That was not a good feeling. Let's hope that it was a mistake, because I am not ready for the realities of this disease yet.
Still working on the appeal to the insurance company to cover her complementation group testing. Her geneticist gets back from vacation on Monday so I can forward them all the info. I have acquired this week and hopefully we can get that going. My back up plan is we have been invited by the NIH to participate in a study they are doing on FA patients and cancer. They will do the testing for free if we join the study; however, their timeline for getting this info. more than likely doesn't match ours since it is for study purposes; but it is worth looking in to.
Macy had her 9 month well child check up today. Wow, 9 months....that is crazy. As usual she was very charming and happy as can be. Her stats are as follows: length 27.5 inches (50 percentile), head circumference 43.5 cm (40 percentile), and weight 14lb. 14oz. (1 percentile) <------yes that says 1. She is long and skinny. Her Dr. said she is not too concerned because her dad and I are both petite ( I was so little when I was a kid I wasn't even on the growth charts), and she has a lot of good fat on her cheeks, arms, legs, tummy, and back. She said she looks healthy and is holding her own; so that is good! :)
Next week Macy has her appt. with the Pedi Surgeon about her G tube. I am hoping we will be able to get that in asap; especially before her hand surgery in July because I know she is not going to eat well around that time.
I hope everyone has a great weekend! The weather has been so nice here, and Macy loves being outside. She is getting her 9 month pictures taken tomorrow so let's hope she is all smiles for those!