Monday, May 9, 2011

5/9/2011 Genetics Appointment

Macy had her Genetics appointment today.  It looks like it is going to take longer than we thought to find out what HLA type she is and what complementation group she is in.  They need to find these things out before they can find a donor match, and before Adam and I can be tested to see if we are a match.  They said this will take 6 months to 1 year.  UGH!  That is a long time to wait and do nothing.  Other than that they didn't really tell us anything we didn't know already.  Macy will have to have regular CBC's to test her blood.  This is how they will know when her bone marrow will start to fail.  She will also have to have yearly bone aspirations done which is very painful.  I am trying to learn as much about her disease as I can.  Once we find out her "type" we can see if she qualifies for any clinical trials in Cincinnati.  Macy has an Oncology/Hematology appt. on May 24th so we should find out more then.

On a side note: We are meeting with her Pediatrician tomorrow to discuss her getting a stomach feeding tube surgically put in.  Her feeding aversion from her reflux is pretty bad.  The pain from the reflux is under control and it is now all behavioral, but her feeding therapist said it is going to take a long time for her to get past the fear of eating.  In the meantime while we are working on that she will need a more permanent feeding tube to give her the nutrition she needs.  It is important she stays hydrated due to her kidney issues.

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