Thursday, April 23, 2009

Sorry for the Lack of Updates

It has been challenging to put into words all the emotions and frustrations that we have been feeling around here lately.  On top of all of it Lucy has not been sleeping well, which means I have not been sleeping well!  We’re not sure what her problems are, but I do think that it is entirely possible that she is cutting some more teeth.  She is waking frequently, like every hour or so, and needs some comforting to fall back to sleep.  Because of her terrible nights she has been extra sleepy during the daytime, sleeping sometimes four to five hours during the day! 

March 26, 2009 to March 30, 2009 029

We are still trying to figure out her up coming admission.  Not sure yet when this is going to happen.  Thank goodness we can afford to wait on all of this.   I have neglected to mention something else that has been thrown into this up coming admission.  Her metabolic doctor would like Lucy to undergo a fasting study.  I can’t remember if I wrote about this in December?  A fasting study is just that, they want to fast Lucy to see how long it takes for her body to go into crisis.  As soon as they see her failing they will draw labs in an effort to isolate what could be causing  her hypoglycemia.  When we discussed the possibility of doing a fasting study in December everyone agreed that she was too small for the quantity of blood that they would need to draw for the study.  She is a few pounds heavier now, but is that enough of a gain to subject her to this?  Naturally, Drew and I have questions and concerns for doing this study.  I called her endocrinologist last week to discuss with him our concerns.  It has been challenging, to say the least, to speak with him directly.  I did finally receive a call back from his nurse practitioner yesterday and she was able to get us an appointment for next Wednesday.  This sure beats the earliest  May14th appointment slot that I agreed to last Friday.  She agreed that we need to meet and discuss the situation before agreeing to do the study.   Our patience has truly been put to the test!

I am tired and I just put Lucy back to sleep so I am going to sign off for tonight.  I will keep you updated as we learn more.  Thanks as always for your love and support, we appreciate it!

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