She has been improving

Thank-you so much for all your notes - they have been a great encouragement to me today. 

Rachel is doing better right now.  She even had some happy periods this afternoon.  (although definetly muted) And no more blue periods or spells...what a relief! I'm so glad for the reprieve.  She has been working hard the past couple days to get out a few hard poops - disappointing because we had so hoped that the change in prune juice would help her have softer ones.  And, she doesn't have strength to spare these days. 

By the way, I'm not sure I have ever mentioned this but I am finding out that kids with heterotaxy (in simple terms - when some organs are on the wrong side of the body) have ALOT of problems with constipation.  I'm planning to talk with the Dietician on Monday about adding Beni-fiber....(or some name like this??)  Some of you have asked about whether we have tried other constipation aids.  The reason why we haven't tried many other options yet is her weight.  Usually these drugs are given to kids who are heavier than 7 lbs.  But I really think we need to do something new because things are not working the way they are.      

I sure didn't feel like doing anything all day.  None of the usual stuff seems important enough to tackle today.  Dave kept reassuring me that this was ok. I think he was having a hard time concentrating on his work today too - and I'm sure he would appreciate your prayers for him in this. Truthfully - I am often amazed at how he is able to work and give of himself to others, while still caring for us at home.  I am so proud of him.  We'll keep you posted on how Rachel is doing....