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How We Spent the Weekend…

January 28, 2013
I just finished editing what I am going to assume to be one of several revisions of Jack’s science fair project.  Long distance homework…we’re getting good at it!  I’m a mom, no matter where I am or what the circumstances, my job is to be “there”, to encourage, to crack the whip when need be :).  Drew emailed me an update on the project and what Jack has finished.  Not bad, not bad at all, but it still needs some work.  Keep going, give it your all, you can do it buddy, I know you can!

Speaking of being a mom, my mom has been with us on and off pretty much since the end of November.  She commutes back and forth from Wisconsin to Pennsylvania like she is just running an errand to the grocery store.  She knows the flight schedule leaving Green Bay and arriving in Philadelphia like the back of her hand.   She has been a rock for us to lean on, but in particular for me.  Just knowing she was “there” in my place feeding my kids “healthy nutrition”, assisting with homework, practicing piano, doing laundry, ironing my husbands shirts, making sure that everyone has what they need for each respected activity,  tailoring the kids lunches to meet each of their specific likes and none of their dislikes, enforcing our routines and our household beliefs on our kids…has been a HUGE help.  My mom went home on Wednesday, I miss her already.  Drew assures me that things are well at home, I have to trust him as I have not been home since January 2nd.  Sophie tells me that Daddy makes the bed, most days.  The kids are doing pretty darn good in spite of the circumstances, as much as it pains me they have a routine that they have fallen into without me and Lucy.  Enough time has gone by that new normals have been established.  I know when we are all home again everyone will be willing to give up their new found routines in favor of the old.  Drew is taking on things at home and doing pretty darn good as well, including the doing the laundry and sorting the mail.  Actually, anyone could probably do a better job than me when it comes to sorting the mail. Yeah, I’m that bad at it.  I am proud of all of us, but especially our kids.
On Friday evening we were being threatened with a few inches of snow, it only really snowed an inch at best, nonetheless it was enough of a threat that the kids stayed home with Helen.  Drew came to see us late in the afternoon and for the first time ever I left our sleeping Lucy in the loving care of the wonderful nurses on the floor and walked out of these hospital doors with my husband for a few hours.  My mission was to run an errand to Target, Drew’s mission was to get me out of the hospital.  We accomplished both and even had a car picnic in the snow.  We didn’t have time to eat in anywhere so we got take out.  No matter where we are or what the circumstances, as long as we are together life is good.

Thursday, Friday, and Saturday nights were not great nights for our girl.  She has been dealing with what appears to be episodic periods of nausea and vomiting, added with some, more like a lot of diarrhea.  Seriously, what’s up with that?  Once in a blue moon Lucy has a bowel movement, but vomiting…it’s not really her thing, or at least that’s what we thought.  Child, my head spins just trying to think of reasons for why your body is doing what it’s doing.  We keep blaming things on the infection in her body, it’s the scapegoat so to speak.  As for infections, the infectious disease doc and I had a lengthy conversation about our special girl on Friday and again on Saturday.  Dr. R cringed when I told him that it was a good conversation, good as in not good but more like a relief.   I know, I know, it’s never good when you have to consult with ID, but when you're at this stage of the game, having the knowledge of a specialist like this agree with what your thoughts are as a mother, it is good.  Dr. R and I will discuss the details of all that was talked about and hopefully tomorrow move forward with implementing the plan.

Today I gave Lucy a bath in her bath chair, in the bath tub, for the first time since, oh geez this is going to sound really bad, last year.  She has received sponge baths, but an actual bath that’s something entirely different.  She was a little lady of leisure in the tub today, and two hours later(seriously, it took that long) when all was said and done, she wanted everyone on the floor to come and see how clean and beautiful she looked in her I LOVE YOU pajamas.  She makes me smile, and everyone else too.
Drew and the girls came by to see us on Saturday night, Jack had a sleepover with his buddy Paul, and then they all came to see us again tonight.  I love having them all here.  Megan and Sophie brought their American Girl dolls to the hospital, wheelchairs and all.  Jack brought his finished science fair board to show me.  Ask me anything you want about Venus fly traps, if I don’t know it I know who will.

We are hoping to hear back from the doc at Hopkins this week.  Conversations are also being had with the doc at Jefferson.  In the meantime, Lucy is doing pretty well considering all that she has going on.  Her labs are stable and for the first time this month her calcium is not increasing, we are attributing this to the Calcijex working.
Tomorrow is another day, we’ll take each day as it comes and celebrate all that we can.  Jack has my computer so I don’t have access to pictures, sorry Alicia, I’ll post some tomorrow when I get my Mac back.

Thanks as always for your thoughts and prayers, love and support.   
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erin chretien said...

That was a beautiful post. Such a loving family from the grandma, to the parents, and the kids. What a struggle you go thru everyday, especially what sweet little Lucy has to endure, and you are all so blessed to acknowledge the grace and love in your life. God bless you all.