A Wizard, a Scarecrow, and a Firefighter

Oh my!  This morning things were a little different than our usual routine, each kiddo had an event at their school in which they could come dressed in some sort of costume.  Jack’s school allows them to come dressed in their Halloween costume as long as they do not wear a mask, paint their face, bring a weapon, or have glitter.  That sounded fairly reasonable to me.  Jack dressed...

What did we do today?

A lot of laundry, went to music class, ran an errand, did homework with the kids, allowed Lucy to sleep all afternoon, cleaned the refrigerator,  made dinner, and went to NO medical appointments!  Yes, we had a pretty normal day which we were all grateful for!  Yesterday morning I took all of the kids to our pediatrician’s office to get their H1N1 vaccine, and apparently so did...

A Very Bad Hair Day

BEFORE AFTER My hair hurts just looking at her… Does anyone have any suggestions for getting super glue out of hair?...

On your marks, get set, go…

What a crazy busy day, week, month we have had!  Yesterday was one of those days where I there was no room for error in the schedule.  I had just enough time to get from here to there without stopping or being delayed by even the smelliest dirty diaper. The 24 hours of having Lucy’s head wired and wrapped in gauze all the while carrying around an few extra pound bag over my shoulder went...

Heart to Head

Lucy had a long and exhausting day, which means that we all had a long and exhausting day!   After carefully orchestrating who was going to be where and when today, Drew and Lucy and I met at DuPont for appointments with cardiology and neurology. Lucy’s neuro referred us to this specific cardiologist because she has experience with patients with mitochondrial disease.  It was a relief...

Hot Wheels!

Yesterday we had an appointment at DuPont to pick up Lucy’s new adaptive stroller/pediatric wheelchair/adaptive seating system/Hot Wheels!   For those of you who know me well or have seen our garage, know that I am a bit of a stroller aficionado.  Like a fine craftsman, I have to have the right tool for the right job.  Notice how I phrased this in terms that my husband can understand,...

When I grow up…

Mommy, when I grow up I want to work in a restaurant. Ok Soph, what do you want your job to be in the restaurant… the cook, a waiter, the table setter, dishwasher… No Mommy, I want to be the balloon maker! We eat at too many kids eat free restaurants....

Weekends

I love weekends, I wish they were longer!  I love being home all together as a family.  I love that we eat big breakfasts late in the morning, hoping to fill the kids up so that we can go on an adventure with all of them before they need to eat again.  Almost always someone is hungry again before we even arrive at our destination.   This weekend our weather was cold and rainy,...

Happy Monday!

Yes, I’m trying to make an effort at celebrating the everyday, so happy Monday!  This week we have several doctors appointments (that will take up most of a day), a trip back to CHOP to have Lucy’s tube fixed and/or replaced,  soccer practice and a game, therapy times three, music classes times four, Jack’s heritage day at school on Friday morning, a session with an infant massage therapist(Lucy...

A Picture Says a 1000 Words

So what do a lot of pictures say?  Enjoy…   ...

Yeah, it’s finally the weekend!

I wasn’t sure Friday was ever going to come this week, we are looking forward to this weekend!  Lucy has been awake for only three of the last 24 hours, she is really wiped out!  She went to sleep for the day at 4:00 yesterday and I woke her this morning at 9:30 for therapy.  She is very floppy and unable to stand on her own today.  We are always surprised when she regresses...

GJ Tube

After a very long day of waiting and soothing, and waiting and soothing,  and soothing and soothing some more Lucy is now a not so happy owner of a GJ tube.  Her new hardware is…well…BIG!  I was hoping that her new tube would be a little bit smaller than her PEG, it’s not.   It is more flexible, but it’s longer and heavier, and has a very large W port on the end.  I know...

It’s October!

  Please tell me I’m not the only one who is surprised by this.   This week is the start of our marathon of appointments and procedures.  If you ask me what I have to do this week  or even tomorrow, I don’t think that I could tell you without looking at my calendar.  This morning I took a look at what was on our agenda and by the afternoon I had already forgotten that...

It’s all in how you choose to look at it!

We have a lot to be thankful for!  Our life for starters, we love our family and all, well maybe not all but most, of the stuff that goes along with that.  We love that we have been given the opportunities to raise four very different, very loving, very individual, very silly, very messy, very kind, and very special human beings!  Each one of them has their own individual needs and...