Tuesday, March 11, 2008

Answers for a few questions

*Can't Joshua have a shunt to drain the fluid?

Joshua's cele is only skin/membrane. There is not any cartilage or bone in his encephalocele. As far as I know a shunt would need to anchor to something. Also, at this point Joshua's situation is so precarious, I think inserting a needle or doing a surgery for a shunt would kill him. I do put a shunt into "heroic" territory. A shunt might give us more time, but it's not a fix - its a delay. If all the fluid was drained from his cele then we'd have tons of empty membranes flabbing around. Also, that fluid is serving (to some extent the CSF is serving as "bowling bumper pads"). Besides that it's never been an option with all our doctors and nurses - no one's ever mentioned it. And we've talked extensively...

*What did I use to up my production?

Fenugreek. It's an herb, I bought it form "Nature's Way" - which I remember seeing in lots of health shops/GNC type stores in the USA. DO NOT get the Fenugreek with Thyme as Thyme is not recommended for nursing mothers. Pair this with breastfeeding and then pumping (manual or electric) after nursing so as to ensure the body is completely empty. The body will respond to making as much as is needed. Sarah - tell your friend to hang in there! Doctors paint really horrendous pictures when babies don't gain weight. But a slow weight gain is not going to give them brain damage or something serious like that! (Slow weight gain, not weight loss... that's a problem). Take Fenugreek 3 capsules (600mg each I think) 3x a day (9 a day).


  1. hi Suzie,

    I pray for you every day. It is getting harder and harder to read obout Joshua. Some days I don't want to log on in case that day was his last and then i have days like yesterday where I lie awake till 3am trying to keep myself away from the pc b/c I don't wan't to miss that moment to pray for you.

  2. Hi Susie,

    I was just recommended your blog and sat here for the last few hours reading every word. You are an amazing person: beautiful, courageous, strong, and good.

    Can you tell me how to subscribe to your blog by e-mail? I don't see a link.

    Warm wishes and big hugs,


  3. Susie, I am so moved by your words every day, and I know this is hard on you and Matt. But I know God is with you, and he will carry you when you need it most. I am praying for you and your family every day. And your trust in God will help get you through. Dianne