Friday, January 9, 2009

What's Happening

Hi everybody! It's been a while since I posted anything about what's been going on in the Marlett household. I have been either too busy to post or too tired to stay awake to write a post. Time is precious, I find myself weighing everything I do with the need for more sleep. I am always wondering whether to do this or that or go and take a nap. If on a rare occasion, and I mean rare occasion, that I have all kids napping at the same time in the afternoon my brain goes into overdrive. You would think that I would run to my bed when I have the chance to nap, sometimes I do and sometimes I just want to steal a moment in the day to sit down and think! I crave those moments in my day where I have time to actually complete a thought without being interrupted by kid stuff, laundry, phone calls....even if it is only five minutes. Even as I type I am fielding questions from the right and left, doing loads of laundry, building a Brio train, and answering the phone when it rings. Don't take this the wrong way, I love my life and all that goes with it, but this Mama is in need of a looooonnnnng nap! I desire to wake up from sleeping when my body tells me to, not when the alarm buzzes or I hear the baby crying. Maybe this weekend I can catch up on some much needed zzz's, or maybe I am being a little unrealistic with my napping desire because I am so tired today! Drew has been out of town on a business trip all week. Ah ha you say, this explains the beginning tirade in this post! If there is some sort of parenting badge of honor for surviving a week without your husband and taking care of four small children, one of which requires extra medial attention, then I think that I deserve such an honor. This week has been a personal triumph. I sound a little dramatic I know, but keep in mind that I am very sleep deprived so every little thing is magnified times something!
Many people have been asking about Lucy and how things are going. Last week we saw the pulmonologist at DuPont, I think I mentioned that in a previous post. We need to rule out any possible chance that Lucy has Cystic Fibrosis. After speaking with the doctor about Lucy's medical history, she concluded that we needed to explore further genetic testing on Lucy to see if she has any of the 1500 or so gene mutations for CF. There is really only one lab in the Untied States that does this testing. The test basically takes Lucy's DNA and compares it with all known CF gene mutations. This is a time consuming process; therefore, the results won't be know for several months. Again we hurry up and wait, we have so many things we are waiting to hear results back from I need to write them down so I don't forget. In the meantime, we have repeated the CF sweat test to see if the results have changed from July/August, we are repeating a stool elastase which looks to see if she is having any malabsorbtion issues now, and she had a new test done which is looking at her imunogloubulin levels. This week I went to DuPont twice, once to repeat her CF sweat test and a second time to drop off a "specimen". Next week we will go back to see her GI doctor at CHOP. Drew and I have a list of questions that we want to ask the doctor, we are hoping that this appointment will be a little more productive than our first. So it looks like we are continuing or streak of doctors appointments.
OK, it's late and I don't have the energy to post our most recent event. Look for an update tomorrow as you won't believe what happened tonight!

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