Delayed update

Sorry for the delay in updates. We are trying to settle in with the new routine and adjust to meeting all of Zachary's needs. We have to flush his central line 3 times a day, remember all his meds (well there are only 2), schedule appts and feed him. He is still eating 2 oz by mouth and 1 oz by pump. It takes a good 1.5 hours too feed him and during the day he is suppose to eat every 3 hrs from 6am to 9pm. It is exhausting.

The hardest part for us is getting him to eat from the bottle. We have tried like 5 different bottle/nipple combos. He just kind of opens and closes his mouth and can't get a grip on the nipple. He has done this since birth. It is pretty much hit or miss. If anyone has any tips on teaching him to latch on to the nipple, please email me. We are exhausted and I just want little man to eat! He also seems to be a bit uncomfortable with gas. We are giving him the mylicon drops too.

Yesterday we had our first appt at the hematolgist/oncologist office. It was at 1:30 and we were there until 4pm! YIKES! Dr. Rob and Dr. Bob (I love that) are really sweet, caring and helpful. They all love Zachary and are just truly wonderful people. They checked him out and he is doing fine. They had some problems with getting blood from his central line and had to put some meds in it. In the end they got blood from his arm. He was already whining/crying from being hungry but did not cry any harder when he got stuck! I was ready to but he did fine so I bit my tongue and didn't cry. He also pulled his feeding tube out and they had to reinsert it. The routine is that they will draw blood and depending on what his red blood cell counts do, will determine if he gets another transfusion. If they are low then he will get one. If his white count is high, and continues to rise, then he goes in for more chemo.

There is so much to digest. We got our call from St. Louis Children's Hospital and we meet them on Tuesday. We meet w/our transplant coordinator and the transplant doctor. We are signing consents to start the search. They will start looking at donated cord blood first since Z is so little. Then they move on to registered donors. Now, many have asked about getting tested and I love you all for that. However, Dr. Rob told us that the likelihood of someone matching is 1 in a million and it can be expensive. My niece Sarah went to www.marrow.org and under events you can check for drives in your area. If you get tested via a drive it is a lot less expensive. The one here is $52. I do not expect anyone to do this but since so many asked, I am just making the information available. If you get tested then you are entered in to the national registry. I am not sure if you can be tested just for Zachary, we are looking in to this. But even if you do get on the nation registry you don't have to donate if you are a match.

When we do find a donor, they will have a physical done and more testing to confirm they are a true match. Then my insurance company pays for them to go to the nearest center (it may be local or they may have to fly them somewhere) and the donor should not have any out of pocket expenses. They will also check Englands registry too.

Again, thank you all so very much for your support. I do not want anyone to feel obligated to be tested. I know it is costly. I am just hoping and praying that we can find a match at the cord bank here b/c then we can move forward super quick! That would be the ideal route for us.

Have a great day!