An “Off” Day

We are bound and determined to celebrate Halloween-at- home this year, and we were going to kick off our home Halloween weekend with a hay ride out to the pumpkin patch, but… it’s snowing, it feels more like we should be getting our Christmas tree.  I stepped foot into a Target for the first time in months on Thursday looking for wings for a monarch butterfly costume that Sophie very firmly stated...

Beach Memories…

Lots of memories were made during our beach vacation… it’s hard to believe that it was just a little over a week ago that we were basking in the sun, with the wind at our backs, and sand in between our toes.  We thought long and hard about how a vacation like this would work for our family.  As you can imagine bringing four children anywhere is challenging, but having one very “special”...

The view from here…

Enjoy! ...

Sophie sells sea shells down at the sea shore…

That is if we would let her.  Our kiddos have been fund raising machines this year, coming up with all sorts of ways to raise money: pizza night, lemonade stands, fruit and vegetable stands, carnivals, bracelet sales, comedy shows… and in their own way raising awareness for mitochondrial disease all in an effort to “save Lucy’s life”.  For our kids, this is something that they CAN do to...

Home Sweet Home…

We finally made it home tonight a little before 7:00PM…can you say loooooong day!  We were discharged this morning at 11:00 AM, just in time to head downstairs for an outpatient therapy appointment with Lucy’s PT.  Afterwards we went straight to the outpatient pharmacy to attempt to pick up a prescription that I normally order from another pharmacy, but did not because we have been in...

Still here…

It has been a long day, week, admission… We went down to the OR around 1:3o.  They were ready for our girl.  Dr. K explained his plan and told us that it was going to take him as much time as it would take him…words that were both comforting as well as worrisome. (Dr. K made Lucy a tiny gauze heart to cover up her sutures:) A little over an hour later he came out and told us that things...

Our Weekend…

Our weekend actually went by faster than I thought it would.  Medically, Lucy did just what Dr. R ordered…to behave!  Her cultures have all been negative, which means that our fear of reinfection is no longer, and her new line can be placed.  We are scheduled for surgery tomorrow afternoon with Dr. K again.  Afterwards we are hoping to pack up and go home!  I spoke with our...

TGIF…

Really, I will be saying TGIM on Monday when Lucy can get her new line put in and we can go home.  Today was another day of waiting for bacteria to grow, or rather not grow…so far no growth.  Medically speaking today was an uneventful day, Lucy’s red mans was better than yesterday, but not gone.  We are watching her carefully for any increased signs of reaction.  Her blood pressures...