It has been a quiet but busy week. Molly finally had her ct scan on Thursday although she was not stable enough to be sedated, she was able to lie still and have the scan without sedation. The scan looked great and showed no infections. Molly has made some progress on paper over the past week. Her kidney and liver enzymes have come down a bit and her ultrasounds have showed improvements. She has also weaned down a bit off her oxygen but none of these improvements shows when we look at her. She still has a really bad rash on her arms and cheeks and sadly her hair is falling out again. Molly started a morophine pump to keep her more comfortable and for the first time in a long time, she is having IV nutrition. They didn’t want to put the ng tube back in while she has been having breathing difficulties and she continues to have fevers. At this point the doctors feel it might be a virus that can’t be detected but she is making small improvements each day and as long as we are moving forward we will be grateful for that. On Friday Molly gave everyone a bit of a scare with an erratic heartbeat so she had not one but two MRI’s by 9 am and in true Molly form they both came back clear. Molly still spends her days sleeping so it has been extremely difficult to not see her bubbly personality and to hear her sweet little voice. The kids are missing their visits with her too. Today marks day 19 since her latest boost of cells and we have not seen any signs of cell recovery yet. The doctors were hoping to see her engraft this weekend, but nothing yet so if they don’t see engraftment soon they will have to come up with yet another plan and this transplant may officially be a failure. The kids are finished school now so Rebekah and I have been spelling each other off to spend time with molly and the other kids. The big kids are enjoying there early summer weather with time at the parks and water fights with friends. The doctors continue to watch molly closely for everything and she is keeping them on there toes. We know molly doesn’t do what’s normal or expected and I think they are starting to realize that too. As always, we are grateful for the prayers and the little steps of improvements she makes each day and although it feels a long way off she will soon be tearing up the halls and eventually swinging high on her swings once again.
