What’s next on the agenda?

Could the world just stop for a moment so that we can catch our breath around here?  I am staring at my calendar thinking that we are going to need to schedule in some serious fun this month as it is going to be a medically bogged down next few weeks.  I took the weekend, and last Friday, and today off from making any phone calls to schedule appointments for Lucy.  I just needed...

A Few Things We Can’t Live Without

We just received our monthly medical shipment from our UPS guy yesterday.  He looked like he was running back to his truck to get another box, so I asked him if there was more.  He smiled back to me and said, “that should last her another month don’t you think?”  Funny thing is I have never told him what the boxes are for, I guess the enteral feeding department label on the box gave...

The Way Energy is Made

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Since Getting a Mito Diagnosis…

  Has our life changed much since getting Lucy’s diagnosis, technically not a whole lot, emotionally a lot!  Technically we still need to see all of the specialists(eleven at last count) that Lucy has seen before plus some.  Our neurologist has been communicating with Dr S. in Atlanta about Lucy’s diagnosis and what the dosing recommendations are for the Mito cocktail.  Dr. S...

Mito Awareness Week September 20-26, 2009

This week has recently been proclaimed Mito Awareness week. I thought I would dedicate this week to our Lucy Grace and to all who are affected by this disease. Before Lucy was born I had never heard of Mitochondrial disease. Now I feel like I can’t learn fast enough about this disease that affects our little Lucy and so many others. I will try throughout the week to share information about mitochondrial...

Wednesday

It is only Wednesday, wishing it was Friday.  It has been a very LOOOOOOONG week so far. Every night has been filled with commitments and activities.  With three in school this year, we have attended three back to school nights in the last few days, and filled out what seems like three hundred pages of emergency contact forms, reading logs, homework assignments, and PTA forms.  In the...

An update on today’s events

We are home and looking forward to going to bed.  Lucy is home and sleeping like a baby in her crib.  Sophie is also sleeping as she had an exciting day riding in an ambulance and being spoiled by the ER staff at DuPont.  Jack and Megan had no idea what happened until just a few minutes ago when Drew and I told them.  They are so relieved that Lucy is doing better and that we did...

Metabolic Crisis?

Thought I'd let you know what we are doing right now. I posted this on our mito forum and thought that I'd do the same here since we caused quite a stir in the neighborhood this morning. We are currently waiting for labs to come back. I'll post more later...We have experienced what I believe to be the perfect storm. Yesterday we were out and about most of the day which meant no long nap for our excessive...

Where does the time go?

Again I am way behind in updating you on what has been going on in our lives.  I just can’t seem to find the time to complete a thought.  I am going to be lazy tonight and just write in list format some to the things/issues/stuff/happenings/goings on in the Marlett  house recently: Sophie had her first day of preschool yesterday!  She has been anxiously awaiting this day, well...

School Days

School is back in session for our “big kids”.  I have to admit that I  have mixed emotions about school starting, I am sad that another summer is over and our freedom of doing what we want when we want to do it has ended.  School starting means we have to change gears and go back to a strict schedule again.  On the flip side, this year for the first time; I have to say that even...