Thursday, June 22, 2006

Site Down website is down. :( Sorry. It should be back up soon, so don't forget to visit.

Wednesday, June 07, 2006


Well -- God moves in amazing ways. Our prayers have been answered. I will tell you more about it in another post, but if things work out as they seem we will have some regular help and even details that we didn't consider may be well taken care of.... more to follow.

Tuesday, June 06, 2006

Prayer Request

Dear Everyone
Thank you so much for all your prayers and words of encouragement. Emily was doing quite well yesterday, but last night was very difficult. She is wheezing, coughing, and very anxious... maybe b/c of the Albeuterol we are giving her for her wheezing. Anyway -- Diana was up pretty much the whole night and I can remember seeing every hour on my clock, many times more than once through the night... and if you can imagine, that was only one night. Diana gets very little sleep night after night after night. We would like to ask everyone to pray that God will provide us with someone that can/will learn how to help us take care of Emily b/c this is just too much for two people (Diana and Me), especially because I am working full-time. For most of Linnea's sick days I did not work so we could trade off responsibilities. This is not the case with Emily. I don't know how to make this sound dire enough, so please read into my words and understand that we cannot continue doing this and remain healthy. Whether it is a live-in Nanny that we can't really pay very much, or someone who visits us when we call... Diana needs some relief. Please lift these thoughts up in prayer when you remember.


Sunday, June 04, 2006

Email from Diana

Hi Everyone,
I just wanted to fill all of you in on Emily's day and ask all of you to pray for her and for us. I noticed last night that she seemed to be breathing a bit harder, but was too tired to think much on it. This morning, she had a mild fever and was fine. Then after church, she started to get really fussy and kept coughing. We finally left our friend's house to bring her home to do her cough assist and suction, then nebulizer, and had antibiotics ordered and picked up soon after. She is working really hard to breathe, with her heart rate up very high, maintaining her oxygen saturation just below what we'd be comfortable with. She's grunting and heaving a bit. We are keeping her comfortable, hoping the antibiotics will help soon. She's lethargic and uncomfortable. I've given her Tylenol, and her hospice nurse has suggested that we give her some morphine, since her HR is so high, 190 or so. It gives me tears when I even think about doing that. She probably will be fine in the next couple of days. However, it's days like this that remind me of the battle that we have yet to face. Every time her health declines a little, we are reminded of how fragile she is, and my heart just breaks a little more. As I write this with tears running down my face, all I can do is ask for your prayers. For her healing, for her comfort, for us to trust in Him and that He will guide us through these times when we might have to make a decision that just seems to bring us closer to that day. I don't want to give her morphine, because I know that it just becomes more and more. Of course I don't want her to be in pain, but it's just so difficult to make these decisions. It's heart breaking to see her little body working so hard to breathe. She had these symptoms a few weeks ago, so it's strange that it's happening again. We think it's strange and will be pursuing this with her doctors. Again, please shower us with prayers, any that you think that we may need. Thanks, Diana

Thursday, June 01, 2006

A 4-year old's thoughts

Annabelle is our tenacious four-year old and she is always thinking... and moving. The other day she blessed us with a couple thoughts; one in prayer and the other in conversation:

  1. "Dear God, please help no one to have SMA and please keep everyone healthy. And God, please help us to enjoy Emily for as long as she is with us. Amen."

  2. Annabelle: "Daddy, are tomatoes 'rou-rou' (肉肉 = Meat)?"
    Me: "No Annabelle, rou-rou is meat."
    Annabelle: "Oh yeah, so rou-rou has protein, right?"
    Me: "That's right Annabelle, you're so smart!"
    Annabelle: "Do carrots have protein?"
    Me: "No, carrots have carotene."
    Annabelle: "Oh, so do tomatoes have tomatotene?!"
    Me: "No Annabelle, but that was a great deduction! Tomatoes have other vitamins that are good for you."
    Annabelle: "Like my gummy vitamins!"
    Me: "Exactly!"

That was great! So I looked up the specs on carrots and discovered that a raw carrot does, in fact, have 0.98g of protein, so I'll have to go back to Annabelle and correct myself. But, c'mon... 0.98g's?! I was mostly right. :)