Thursday, September 24, 2009

Rough Week

As a family, we have reached a nearly unbearable level of exhaustion. The combination of so much for so long and a lot of sleep deprivation is taking it's toll. I am truly grateful for family and prayer, the two things that consistently get us through the tough times.

Amanda is not doing well. She has been on a very high level of steroids this past week. She has been in a lot of pain. She started with the mouth sores, nausea, intestinal ulcers, joint pain, skin itching, insomnia, and bone pain. All of on top of the already ornery mood swings that steroids bring and a child that has a very low pain and discomfort tolerance. She is on round the clock narcotics to keep her comfortable until the steroids wear off. She's cried a lot this week. We've had help from family daily. My mom jokes that at times we really need four adults here to keep things going. It's sadly true as Amanda is proving to be far more work than her newborn brother and emotionally explosive sister combined. Amanda will have this week to recover and we're back to two weeks of intense treatment again. Her doctor decided to take her off Methotrexate and try another drug (Hooray - I hope). So perhaps she may do better. By the end of this round we will know what reaction she has to each drug. Knowing how she will react makes the next two years seem manageable. Her immune system is at it's lowest. It's interesting how quickly she declines, but how quickly she rebounds as well. We are encouraged by her doctors that she can start school after Halloween. Having this to look forward to is getting her through this last phase.

Will is up to 5 lbs. 6 oz. Gradually we are working towards a clean bill of health for him. His blood clot (officially diagnosed as a portal vein thrombosis) is getting smaller. We are doing a wait and see approach and very likely will not need to treat it. We follow up again in a month. We are still waiting for genetic testing to rule out a blood clotting disorder, but so far everything is coming back negative and doesn't appear to be a problem. The medication to detox his liver is working well, other than increased colic, and we'll follow-up with the GI doctor in a few weeks. None of the specialist doctor's we're involved with are overly concerned about his current health issues, which is great. I can tell by the decrease in medical appointments and their reactions that Will is doing well, other than being a small little guy.


  1. My heart goes out to you in these tough times that you're going through. I'll keep your family in my prayers. I miss all the relatives in Utah. But I'm grateful for your blog and Andrea's blog to keep me updated a little. Love your cousin Jolie

  2. Hi Mary Ann,
    All I have to say is those steroids "SUCK", and I think you need a nanny. I wish I could be there to help you more. Take care. xoxoxoxox