Transfusion #3

Well, transfusion #3 at Hopkins went well on Thursday! Ben and my mom took Bailey down for the 10am appointment and I met them down there around noon after working part of the day. As usual, little cheerful Bailey was sitting up playing and being carried around with her cute little IV pole. I must say she looked especially cute with her little pink bow. She got started receiving the transfusion around 11am, and the four hour transfusion went right as scheduled and we headed home somewhere between 3 and 4pm. I am excited that she is able to crawl around still even with the needle in her hand, the way they attached it, so she wasn't too restricted. We talked with Dr. Strouse and we went over her blood work from Wed's blood draw. It looks like the lab values from Labcorp that we had the previous week were done differently because her reticulocyte count (0.7) was no higher than the previous labs done at Hopkins. So, very unfortunately, it is safe to say that her body has not begun making its own red blood cells. We also learned more about what to expect when she begins steroid treatments around a year of age. She will receive 1 of 2 different steroid drugs (prednisone or prednisolone) and will typically begin with 10 mg a day, then go to 20 mg every other day, then they start to taper her off to see if she can maintain a low enough dose (and her body continue to make its own red blood cells) to remain on it. So I have a fun filled day ahead of me...filling out about 100 pages (no joke!) of forms for the NIH study we qualify for...and then heading to the NCR trail...its already 65 degrees out!

Bailey is scheduled for her bone marrow biopsy/aspiration next Wednesday at 8am. It's an outpatient procedure so we'll be home the same day. It will be painless for the most part since she will be under anesthesia, but the needle site might be sore a few days. This biopsy will confirm her DBA and give the doctors more information about how her bone marrow is functioning and whether it is now producing any red blood cells. Please pray for a safe and painless procedure!

I started a CaringBridge page for Bailey that will have information about her DBA journey on it.... www.caringbridge.org/visit/baileylightner (it's still a work in progress!). Eventually, it will be accessible from the DBA Foundation website (www.dbafoundation.org) under the For Families section. That way, our family blog will talk about the other wonderful things in life OTHER than DBA as well!