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...

Here’s the latest

Well the plot thickens.  Last Thursday I received a call from Lucy’s metabolic doctor, Dr. G.  She was calling to ask me about doing Lucy’s muscle biopsy.  We had a debate about where to have her biopsy preformed, she feels that it would be best to combine her PEG-tube procedure with her muscle biopsy.  This would eliminate her having to have two separate anesthesias.  We...

Aghhh….

I am SO FRUSTRATED with the CHOP system!  After we heard back from Dr. Schoffner last Thursday, I made the call to CHOP that we indeed want to move forward with doing the endoscopy and PEG-tube procedures but not the muscle biopsy.  I received a call back from them last Friday morning explaining to me that Lucy’s GI doctor needs to actually put the orders in the system before we can move...

Back to the Grind…

I can’t believe that our vacation week is over.  We had a great time this week just spending time together as a family.  Some have asked if we had a relaxing vacation, to which we replied “Is it really possible to have a relaxing vacation with four young children?”  Relaxing would not be the word I would use to describe our week off, I’m not sure I have a word that describes our...

An Update on Dr Schoffner…

We received a call this morning from Dr. Schoffner’s office informing us that he indeed would like to see Lucy.  As you all know, we have been anxiously awaiting this phone call, but now that we received it we are understandably having mixed emotions.    I will write more about this later, for now I have to get ready to take the girls to ballet.  Thanks for all the support...

And today she’s six!

  Six years ago today Megan Olivia Marlett came into this world early, as usual.  Megan is our ONLY child who is usually ready before any one else  in our house, she does not get this from me.  Often when we are getting ready to leave for somewhere I will call out for Megan wondering where she is, almost always she will already be in the car buckled up and waiting.  We...

Still waiting, but decided to take a vacation!

We have not heard anything back for Dr. Schoffner’s office yet.  I was told to call them today if we have not heard anything back, I did but was unable to speak with the office manager.  We are going to continue to hurry up and wait!  My sister told me not to pray for patience because you know who will play tricks on you.  Instead pray for strength.  Is patience or the...

Wednesday is therapy day…

  I know I’m not the only person in the world who uses a calendar to write down appointments and dates that need to be remembered and then forgets to look at what she wrote down, right?  Wednesday is our therapy day, it has been for the last month or so,  but I can’t seem to remember that!  Our kids have a different school schedule this week, which doesn’t help my forgetfulness. ...