From this moment on our lives have changed forever….

I have been sitting here staring at the screen wondering how I am going to word this post and even what to title it…. After nearly a year of searching and wondering, we finally have our answer.  This is the first time that I have ever written this… Lucy has been diagnosed with mitochondrial disease. We are feeling all sorts of emotions and  need some time to figure things out. ...

Weight Check

I am happy to report that Lucy is gaining not losing weight, albeit every so slowly .  I wish someone would tell me I’m not gaining weight  fast enough!  Lucy did lose weight post surgery, but has gained back what she lost plus an ounce or two!  Nonetheless, we need to get Lucy gaining a little faster.  Lucy has  moments during some days where she tolerates a higher feeding...

A long overdue update…

I know, I know I have been slacking in the blogging department.  I plead the fourth, that is four kids that are keeping me busy with camps, activities, medical appointments, and just life in general.  I’ll start by updating on Lucy since her life is weighing the heaviest on my brain right now.  On Tuesday we had our repeat swallow study at DuPont with one of their senior speech pathologists...

Does anyone know what day of the week it is?

Sounds ridiculous, right?  In my sleep deprived state I admit that I have had to ask this question to my husband upon waking on way too many mornings this past year.  He has just gotten in the habit of announcing  the day of the week to me when he wakes, and sometimes even  throws in the date and the year just in case.  Ha ha very funny, but seriously I am having a tough...

Looking on the bright side…

It happened again, the medical world completely sucked the happiness right out of me!  I know I would not be normal if I did not feel the things I have been feeling recently, but it is not in my nature to be so glum.  It has taken time to adjust to our new normal, and I am proud to say that we have established some sort of a routine once again.  I have been busy trying to establish...

How’s it going…

It’s going…that’s my typically response to this question.  Not really sure how to respond, if I’m in the mood I might elaborate if not I just smile and move on.  I would be lying if I told you things are back to normal in the Marlett household, we now have a new normal that is not quite normal. We are trying to get used to Lucy’s new hardware.  In some ways it is way easier than...

What do you call this…our new “normal”

Our new normal is difficult to get used to!  All of Lucy’s life has been focused on getting her to eat more and now we are trying to take the focus off of eating orally.   In some ways her lack of appetite has been a blessing, she is not interested in eating a variety of foods, in fact she is only really interested in nursing or eating Cheerios.  It amazes us how she has no...