A Short Stack for a Tall Cause

We want to invite you to a fundraiser to support the United Mitochondrial Disease Foundation in honor of Lucy Marlett on Sunday, April 10th from 8 to 10 am.   Long time preschool teacher and friend of our family, Lori Lang, came to us and asked if we would be willing to participate with the preschool in this fundraiser for Lucy.  Each year the preschool celebrates the Week of the Young...

About Yesterday…

Sorry to leave you all hanging…for some reason I had difficulties posting on our blog from the hospital network.  When all was said and done it was  nearly 7:00pm when we rolled out of there.  It was a loooong day(we woke up at 4 am) and by the time we came home, picked up our other three children, infused meds, got everyone ready for bed, and crawled under the covers it was after midnight…not...

A Big Day…

We are heading to CHOP bright (well, it’s still dark outside) and early this morning for a big day of procedures and testing. Lucy is scheduled first thing this morning to be put under general to have an endoscopy and manometry catheter placed for a six hour long manometry study which will begin after she recovers from anesthesia. Please say a pray that she has the strength and ability to endure...

Not again…

Thought I would share a little e-mail conversation between the good doc and I. Me: Tube’s out…AGAIN!  Dr. R: Ugggghh… Me:  What’s a Mama to do? Dr. R:  Let me get back to you on that. Frustrating would be the word that sums up my day.  We had a two hour pre-anesthesia appointment for Lucy’s manomentry study at CHOP in which I had to recount Lucy’s ENTIRE medical history to...

Another day, Another GJ…

That’s right, Lucy is now the proud owner of gj-tube lucky number eleven.  Lucky that is,  if it stays in place for longer than a day.  Last week after a very frustrating motility week, we made an executive decision to not place another gj-tube, and instead place just a g-tube.  It was obvious that Lucy’s body was not going to allow us to keep a j in place and since we have so...

“Mommy my birthday…now?”

“Yes, Lucy your birthday is NOW!” (She has been asking me this question over and over again for about the last week.) How old were you yesterday Lucy? Umm, no silly girl…how old are you today? No, not quite… That a girl,now you’ve got it…now you’re three! Happy Birthday Lucy Grace! You’re simply…amazing! PS She loved the cardboard box that her present came in...

Up and Down and…

I am describing our emotions, they are up and down and all around.  So much has been going on medically in the last three years, but more in the last six months.  Lucy’s motility, the way her GI system moves food, meds, and stool through her body has been declining rapidly in the last six months, but even more so in the last two months.  Really I don’t have the energy tonight to go...

Meds…

Enough for a weekend!   These are just her J-tube meds, we have four more meds that are IV, and four meds that we add to her TPN.  Our wonderful nurse, Helen, helped to create this time saving dosing system.  Just a glimpse of our daily life… ...