Tuesday, June 16, 2009

Here’s the Plan

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We have been anticipating this week for quite some time, but no matter how I am prepared I am not looking forward to what the next few days have in store for Lucy.  Today we are getting admitted at CHOP to have her endocrine studies preformed as well as have her GI scope, and finally her PEG tube placed.   This afternoon the plan is to get her IV’s in place.  She needs to have a blood drawing IV as well as an IV for fluids, we have not had much luck with blood drawing IV’s in the past so cross you fingers for this one.  Lucy will need to have an astonishing amount of blood drawn this week for her endocrine studies so a working IV is mandatory!   One hour after she falls asleep tonight they will draw labs to check her growth hormone levels, apparently GH levels are at their peak one hour after you fall asleep.  Lucy will need to do a mini fast before she undergoes a growth hormone stimulation test tomorrow morning.  I will detail more about this test after we learn more.  On Thursday morning she will undergo her GI scope and PEG tube procedure.  After that I am not sure what will happen…

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As Lucy is getting older it is getting  more and more difficult  to put her through any procedures!  She is very aware of the hospital environment and has developed some coping mechanisms that amaze us and break  our hearts all at the same time.  We will be bringing our bag of tricks with us this week as well as some of our favorite blankets, binkies, music, baby carriers and my walking shoes.   Lucy feels secure when I “wear” her in a baby carrier and we walk.  She also finds tremendous comfort in hiding under her nursing blanket.  In fact, she will often seek out her blanket and put it over her head when she is unsure of a situation, oh it is amazing what they know and how they cope!

Drew and I will be with Lucy every step of the way.  I will update throughout the week.   Thank you to all of you who have sent us your thoughts, prayers, and well wishes!!!!  Please keep them coming this week , we can feel their power!

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